Tuesday, December 29, 2009

Week 1: G-Free Recap

Well I'd like to say that I spent the entire last seven days completely g-free, but this has not been the case. Though I immediately went g-free after the tTG blood draw (for celiac disease) last Monday morning, it took several days before I actually felt my energy returning and the stomach aches begin to go away. I was experiencing many of the symptoms during the two months prior to diagnosing myself.

Just when I thought I was finally g-free again, Christmas Eve came and went. I knew I had a small amount of wheat for dinner on Christmas Eve, but thought it might not affect me so much and at worst might get a stomach ache for a day or so, but tolerable. Christmas Day came and went and I ate freely of the candies in my stocking, all of which I thought were gluten-free. As it turns out, either something was not g-free, or the effects of Christmas Eve were beginning to take its toll, because by Christmas night I was not feeling too well, and it lasted all weekend long.

I spent the weekend profoundly tired-- it was all I could do to get out of bed and move around. I didn't want to do anything else. I could have spent the entire weekend lying in bed watching TV-- I had no energy, and was experiencing CD-related heartburn, stomach aches, bloating, nausea, flushing sensations, tingling and numbness; you name it. I didn't know whether it was the candy, or if something I had prepared was not g-free, even though I prepared all the Christmas Day meals myself and was very careful about every ingredient. The more I thought about it, the more I realized it had to be something in the candy, specifically, the mini-peppermint patties (which I love!).

I swore off the candy and gave it all to my kids, and began to feel better within 24 hours. So it is my hope that Week 2 will be much more "normalized" in the world of g-free eating, and will diligently stay away from unknown gluten food sources to the best of my abilities. We are to go to a friend's house this coming weekend, and I hope to be as gracious as can be in declining any food treats, if necessary!

Sunday, December 27, 2009

Mexican Chicken Scramble - G-Free!

OK, I have taken various recipes, combined and altered them, and created my own version of a Mexican-style family breakfast (or other meal) casserole. Use it for any meal when you want something a little untraditional!

Serves 8.


2 cups shredded Mexican cheese
2 cups cooked and chopped chicken (I used skinless breasts)
6 large eggs, at room temperature
2 cups sour cream, at room temperature
2 teaspoons baking powder
1/2 teaspoon dried oregano
1/2 teaspoon ground cumin
Fresh or dried cilantro to taste

  1. Preheat oven to 350-degrees F and generously grease oblong pan (9 x 13 works well).
  2. Layer the ingredients in the dish, first with most of the cheese, then with the chicken, and ending with a light topping of the cheese blend.
  3. Whisk the eggs, sour cream, baking powder, oregano and cumin together, and pour on top of the casserole. Sprinkle with cilantro, if desired.
  4. Bake 30 - 45 minutes or until the top of the casserole is puffy and golden. Serve immediately.

This is a very fluffy, scrambled egg dish with chicken and subtle seasonings. You might also add chopped red and green bell peppers after the chicken. We served it with shredded lettuce and tomato slices on the side. I would love to serve some kind of gluten-free salsa, and a couple drops of gluten-free Tabasco sauce, but didn't have any at the moment.

I forgot to take a picture of how this dish turned out, so I will try to do better next time I post a recipe.

Figuring out Gluten

It is time to expand my repertoire of gluten-free recipes. If this is a life-long disease, then it is high time I learn how to make the best of it and work with it.

I was looking at a book by Carol Fenster, Ph.D. that I bought a couple years ago, called "1,000 Gluten-Free Recipes." Dr. Fenster is widely recognized as an expert on g-free cooking, and her recipes have appeared in numerous publications. She is also the founder and President of Savory Palate, Inc., a company that provides cooking information for anyone who wants to live g-free.

In the beginning of the book, Dr. Fenster discusses gluten in depth, as well as some obvious places where gluten can be found, and some not-so-obvious places. For example, the more obvious sources of gluten would include most baked goods such as bagels, breads, cakes and crackers, as well as cereals, pancakes, tortillas, pastas, and anything made with flour whether from wheat, barley, rye, spelt, or kamut.

Some not-so-obvious sources of gluten include:

  • Bouillons
  • Broths
  • Deli meats
  • Imitation seafoods
  • Licorice candy
  • Malt vinegar
  • Salad dressings
  • Seasonings
  • Soup and soup mixes
  • Tea
Dr. Fenster describes gluten as such:
"Gluten is that mysterious protein that food experts talk about in terms of baking. For example, gluten provides wonderful elasticity in bread dough, but it can toughen pie crusts and biscuits if you handle the dough too much.

"From a scientific standpoint, gluten is actually a storage protein of wheat. For people with celiac disease it is the gliadin fraction of gluten in particular that is problematic. For those who are sensitive to wheat but don't have celiac disease, there may be other proteins in gluten that affect us but we don't know which proteins are actually the culprits."


In all the research I have done, the key to staying g-free lies in reading the labels on everything you buy, whether it be edible, or cosmetic. Though there seems to be some confliction in the medical community as to whether gluten can be absorbed through the skin or not, if you are extremely sensitive to gluten, it is always better safe, than sorry.

According to Dr. Fenster:
"Gluten is in many products, but it doesn't always appear as 'gluten'. It is often listed as all-purpoase flour, unbleached flour, bread flour, cake flour, whole-wheat flour, graham flour, farina, semolina, bulgur, or durum-- all of which indicate the presence of wheat and, therefore, gluten. The Food Allergen Labeling and Consumer Protection Act (FALCPA) requires that wheat-containing foods must list the word 'wheat' on the ingredient label."

Of course, there is also the issue of cross-contamination within factories as well. You will most likely need to ask questions about your favorite products that don't actually contain gluten-- in other words-- how is it processed? Is there any possibility that contamination may occur in the equipment? Some product labels will list whether it is processed with gluten-containing foods, so always check. If you are not sure, ask. Also, not all products that are actually gluten-free make that declaration on the label.

I still have a lot to learn about gluten and its hidden sources. For instance, I have learned that there is something in the Christmas chocolates I have been eating that is making me sick-- though I don't see any obvious offending ingredients listed (I suspect it is the mini peppermint patties that are causing me distress, I still have my homework cut out for me in finding the culprit. I gave in to temptation, and now I get to deal with the pain).

My next step in enlarging my recipe collection includes learning what flours or mixtures of flours to use in place of traditional all-purpose flour in our favorite family recipes. I will post the recipes and their modifications here as I work through them. Chances are, if my finicky family members will eat them, so will yours. :)

Saturday, December 26, 2009

Celiac Disease is an Autoimmune Disorder

Celiac disease is an autoimmune disorder. According to the National Institute of Health (NIH), "An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue" (Medline Plus).

In a healthy person, our immune system is protected from harmful substances by white blood cells. That is why when we have an infection, our white blood cell count is elevated. These white blood cells are sent out to destroy the bad guys (antigens like bactiria or viruses or other harmful substances in our body). But if you have an autoimmune disease, like celiac disease, your immune system can no longer tell the difference between what is normal and what is an antigen. So the body sends out the signal to destroy the wrong thing-- in this case it destroys normal body tissue.

This is similar to when the body has an allergic reaction, but with an allergy, the body is reacting to an external substance, while with an autoimmune disorder, the body reacts to normal body tissue.

Nobody really knows what causes the immune system to lose its ability to determine healthy body tissue from antigens, but there seems to be a genetic prospensity that tends to single some people out while ignoring others.

According to the NIH, autoimmune dieseases will manifest various symptoms that are specific to the disease, but there are some that are common, such as:
  • Dizzines
  • Fatigue
  • General ill-feeling
  • Low-grade fever

Celiac disease is a genetic autoimmune disease in which gluten and other proteins (wheat, barley, and rye) damage the lining of the small intestines. There is no cure, and at this point can be treated only through strict dietary measures. Even trace amounts can cause continued damage to the gut, with or without symptoms. This drawing which I borrowed from the Celiac Disease Foundation shows the interior wall of the small intestine. It is lined with tiny hairlike villi which absorb the nutrients from food as it passes through the intestines. Celiac disease flattens these villi, making it more difficult for us to get the nutrients we need, and in turn-- causing a whole host of other problems.

According to an article in The North Jersey News:

"There are three necessary components to celiac... You need to carry the gene that predisposes you to the disease. You need exposure to the gluten, and you need a trigger mechanism. Right now we don’t really know what that trigger might be, but once it’s triggered into action, it doesn’t go away" (North Jersey News, Dec. 1, 2009).

The Celiac Disease Foundation states that "Celiac disease affects more people than all of these disorders combined" and that "97% of people with Celiac Disease go undiagnosed. Celiac Disease is one of the most common genetic conditions in the world. Celiac is a multi-symptom, multi-system disorder, activated by eating gluten - proteins found in wheat, rye and barley. Symptoms vary and are not always gastrointestinal." So just because you aren't having a stomach ache or some other digestive issue, does not necessarily mean you are free from having celiac, especially if you have a family history of digestive troubles.

When in doubt, check it out!

Modern Science Battles Celiac Disease

The Los Angeles Times reported a week ago that more than 2 million Americans are currently living with celiac disease. Two million people! Wow!

Celiac is an autoimmune disease, and because there is no cure for it, it is something that simply must be managed in order for the CD patient to lead as normal a life as possible. If we don't follow a strict diet, we suffer the consequences-- there is no way around it. What makes the diet so difficult to follow is inadvertently our own family and friends. They are not aware that just because a package does not say "gluten" in the list of ingredients, a food is safe. They are not aware of the hidden sources lurking in almost every prepackaged food product. They are not even aware of the dangers of cross-contamination in their own kitchens while trying to do their best to feed a gluten-sensitive friend.

Going gluten-free is expensive, and difficult. According to the LA Times, a doctor in Australia, Robert Anderson, is working on a vaccine which might actually work as a switch to shut off reactions to gluten, or even prevent a reaction to gluten. It is possible that in the future, a CD patient will be able to receive shots similar to allergy shots, or to take a pill before a meal, just as one might take a pill to prevent heartburn or indigestion. These are just two different categories of treatments that are currently being developed to help people with CD.

According to the article, enzyme therapy is one method in which enzymes are combined from bacteria and barley and will break down gluten into smaller fragments, causing less inflammation of the intestines. Alvine Pharmaceuticals (in California) is calling it "glutenase therapy" and has even gone as far as recruiting participants for a clinical trial. Of course, the particpants must be confirmed CD patients (through intestinal biopsy) and also must have the disease under control by following a g-free diet. The standard test will be with the drug or placebo, followed by a gluten challenge-- usually a couple slices of bread. I hope they are being paid well, because I wouldn't want to end up being the ones on the placebo or otherwise! Yet, so far, the study seems to be gaining some momentum.

Alba Therapeutics (in Maryland) has come up with their own bioengineered drug for this enzyme therapy, called larazotide. The drug doesn't remove the gluten peptides, but is supposed to prevent them from causing an immune reaction. Though I am all for life-saving medicines, I am not real fond of introducing any new drugs into my system if I can help it, especially one that is bioengineered. Regardless of my personal skepticism, patients in this clinical trial are apparently seeing some benefits and are less symptomatic after eating gluten.

Immunotherapy is another treatment that is being examined by scientists and doctors and actually sounds the most promising to me. The doctor in Australia, Dr. Anderson, is working on a vaccination that will depress or desensitize the immune reaction, just as with allergy shots. By placing these peptides under the skin (as opposed to in the gut), the body learns to tolerate them, and in theory will turn off the reaction that causes so much damage to the intestines.

If these ideas are too high-tech for you, there is always the good old-fashioned remedy: hookworms. That's right! According to the LA Times:
"Researchers at the Brisbane Princess Alexandra Hospital in Queensland, Australia, tested the effects of hookworm inoculation on 20 patients with celiac disease to see if it would blunt the immune response to gluten. In addition to hoping to provide relief for celiac patients, the researchers want to learn if this could be an effective therapy for inflammatory bowel disease and Crohn's disease" (The Los Angeles Times, Dec. 21, 2009).

Though the results of the hookworm test have not yet been published, it should be duly noted that the "patients were offered a medication that would kill the parasites, they all opted to keep their hookworms."

Need we say more?

Whole Wheat and Gluten in Celiac Disease

The New York Times recently posted an article titled "Gluten-Free for the Holidays, and Beyond" (Dec. 22, 2009) in which submitted questions about celiac disease were answerd by Dr. Sheila Crowe, professor of gastroenterology and hepatology at the University of Virginia.

One question that caught my eye was with regard to whole wheat and whether it is gluten-free or not. A reader had submitted a question wondering if whole-wheat bread couldn't be used in place of gluten-free bread. Dr. Crowe's reply (in part) is as follows:

"Whole wheat is not gluten-free, so yes, eating whole-wheat bread is a mistake, one you should correct as soon as possible.

"If you want to eat breads, then the only ones to eat must be gluten-free. Breads are a major source of gluten in a Western diet, and they are the hardest product to make using gluten-free ingredients. This is because glutinens, a component of gluten, are what gives bread its unique characteristics, including texture and elasticity" (New York Times, 2009, italics added).

What does this response tell me? That I cannot and must not eat any wheat in any way, shape, or form, in order for me to heal, and healing is what I want to do most. And part of avoiding wheat (and gluten in general), will mean politely refusing bread products of any kind over the holidays-- and that will not be an easy feat. I must make a choice, and I choose to be healthy.

Still trying to figure it out...

I have learned to tell the difference between a gluten-reaction stomach-ache and anything else. Today is definitely one of those gluten-reaction days, although I have not so far been able to pinpoint the source. I have been experiencing overwhelming fatigue and ongoing stomach pain.

Sometimes I get a reaction fairly quick, and sometimes it can take up to two days before it appears. To the best of my knowledge, I ate completely g-free yesterday, which means today's reaction is likely a reaction from Christmas Eve.

Something else I have learned is that when these types of symptoms appear (stomach pain; nausea; flushing or tingling sensations), it is usually the tail-end of whatever I ate, and will pass-- hopefully sooner than later.

The only thing I can trace over the past couple of days that may have affected my digestive system is a small amount of whole wheat that I ate on Christmas Eve. Since then, I have also eaten a number of small Christmas candies (gluten-free) that may also be triggering some kind of reaction to another ingredient-- it is difficult to tell. What I have learned over these past few days is that when in doubt, skip it. It won't be worth the pain later.

Friday, December 25, 2009

Going Gluten-Free....again

Last Monday I was tested for tTG: the Anti-Tissue Transglutaminase test. This should show whether I am 'at risk' for Celiac whether I am showing symptoms or not. Because it is so sensitive, it is supposed to be fairly accurate.

"Researchers have discovered that people with celiac disease who eat gluten have higher than normal levels of certain antibodies in their blood. Antibodies are produced by the immune system in response to substances that the body perceives to be threatening. Think of antibodies as a sending out a warning signal to the body --only in the case of an autoimmune disorder like celiac disease, the warning signal sounds for something that is supposed to be safe --the proteins in wheat, rye and barley that are generically known as 'gluten'" (UC Celiac Center).

Because I had already diagnosed myself and been off gluten for 5 days, I was instructed to return to a gluten diet for the remaining four days prior to the test... which I did, but with caution.

I have noticed that depending on what I eat, it may take anywhere from 45 minutes to 20 hours or so before I start reacting to the gluten. After Monday's test, I immediately returned to gluten-free eating, but it was difficult, and took a couple of days before I began to get my energy back. By Wednesday I couldn't figure out why I would feel great for a short while, and then become nauseous again. I traced back what I had eaten the previous day and the only thing that was questionable was Activia yogurt-- something with which I used to start every morning. So I looked it up on Dannon's website (the parent company), and according to their website, they will not proclaim any Activia yogurts gluten-free because certain flavorings contain gluten, and they are made together with those that don't contain gluten. There was my answer. I immediately stopped eating it, and became gluten-free.... again.

It is amazing how different I feel when I am gluten-free. In fact, I can usually tell when my body is gluten-free because my energy level just sails through the roof —I don’t remember ever having this much energy.

As I continue to learn what is safe to eat and what isn't, I am also learning about the many different alternative flours and mixtures so that we can continue to eat the foods we like-- without the gluten. There is nothing like a major holiday dinner to break you in to cooking gluten-free!!! In one day alone I made two batches of Oreo cookies; chocolate macaroon cookies; French-fried onions (for the Christmas dinner green-bean casserole) and chicken enchiladas (with g-free tortillas) for Christmas Eve. Our Christmas Eve and Christmas Dinner were as traditional as they have always been, and g-free!

If I find a product that looks like it might be g-free but is questionable, I am learning to call the company to find out. Most products come with a 1-800-number on the package, and most have a Nutritionist or hotline that answers common questions, including whether a product is g-free or not. For example, we usually like the Tostitos “Lime & Chili” chips with our enchiladas, and even though the ingredients didn’t list gluten, it contianed MSG. I knew from my own research that some g-free websites say MSG is okay, and some say it isn’t. Turns out, it depends on the glutamate in MSG—whether it was made with corn (safe) or other (wheat, barley, or rye—unsafe). Most MSG in the U.S. is considered “safe”. But we still weren’t sure, so my husband called the 1-800 number that was on the package, and they quickly answered that Yes, it is gluten-free, and offered to send us a complete list of their g-free products!!

I continue to learn something about celiac and gluten every single day, even if it is simply what causes a particular reaction in my body, and what symptoms will follow. By this time next year, this will be 'old hat' and our holiday dinners will be even better. What seems so new and awkward right now, will become normal, and all of us will be much healthier. This is something which will make me very happy!

Thursday, December 17, 2009

Is hunger part of Celiac?

During the past year, somehow I managed to pack on almost 20 extra pounds to my relatively small frame. Outside of pregnancy, that is something I'd never done in my life in 40-something years. I couldn't figure it out. I was always hungry, no matter what I ate-- and I wasn't really enjoying the food I was eating-- I was just hungry. I tried all kinds of "diets" but either the extra pounds just wouldn't come off, or I couldn't concentrate because I was so hungry.

I have always been one of those people who get sick when they don't eat. I could never fast for more than a couple hours without becoming sick to my stomach. I would become extremely lightheaded and feel faint. This has persisted throughout my life. Some doctors told me I just had an erratic blood sugar problem-- sometimes it was too low, sometimes too high. Yet, even when I ate, the food never sat well in my stomach-- there was always pain and bloating, and the usual indigestion. After a little while I would start feeling that sick feeling that usually meant it was time for me to eat again, and the whole process would start over.

I believe people with untreated celiac can experience what they think is profound hunger. Their bodies are telling them to eat because they are not getting the nutrients they need, and can end up malnourished, in spite of the constant eating.

As for me, I kept attributing "symptoms" like this as just part of aging-- gaining the weight around the middle, for example; the thinning hair; the inability to concentrate; irritability. I always thought of the character "Ouizer" played by Shirley MacClaine in the movie "Steel Magnolias." She was such a negative character, but at one point she says in her defense, "I've just been in a very bad mood for 40 years." I felt like that a lot! :)

I found on the website Celiac.com an article by Melissa Croda entitled "Celiac Diease and Obesity: There is a Connection." Croda believes that malabsorption can create hunger pains in people with CD, and believes CD was the reason behind her own problems with obesity:

"When someone with celiac disease eats foods that contain gluten it results in damage to the surface of the small intestine and destruction of their nutrient-absorbing villi. This can lead to leaky gut and an inability for them to absorb vital nutrients from their food."

"With celiac disease, however, the body is unable to absorb the necessary nutrients, which causes some peoples bodies to become a super-efficient machine that begins storing as much fat as possible in order to survive. This nutrient deficiency convinces the body that it is starving to death, which sends it into starvation-mode. Since humans need a certain percentage of body fat reserves to stay alive—and because it takes more work for the body to burn fats than carbohydrates—a body that is in starvation mode tends to crave carbohydrates and more efficiently convert them to fat for later use."

And thinking back to my own family history, I found this statement by Croda of particular interest: "Roughly ten percent of celiacs either have Type I diabetes or might develop Type II diabetes." My mother developed Type II diabetes, as well as one of my sisters. My mother's family also had a history of Type II diabetes.

Once diagnosed, Croda lost over 100 pounds and when asked how she did it, she said "I explained my celiac disease diagnosis and gluten-free diet to them, and how the diet has made me not feel hungry for the first time in my life—due to the fact that I am now absorbing nutrients properly."

Additionally, Croda speaks of six extremely obese people who after talking to her, went to their doctors and were all tested for CD, and surprisingly, all of them were diagnosed with CD! She says, "Immediately after going on the gluten-free diet they all experienced a decrease in hunger and massive weight-loss. For the first time they were eating only when their bodies were truly hungry, instead of eating too much due to starvation signals caused by malabsorption."

There is always the theory that this is why high-protein/low-carb diets tend to work well for a lot people. Maybe they are also gluten-sensitive, and by removing the carbohydrates they happen to be removing a good portion of the gluten as well. Obviously, this is not the answer to dieting, and a high-protein diet is not a healthy long-term alternative for any person, let alone someone with CD.

But it is nice to know that there may be explanations out there other than "behavior" issues or lack of will power. True, eating healthier may put you on the right path, but until the right suspect is brought in for questioning (gluten), the CD patient is going to ultimately feel like the "yo-yo" dieter who gains the weight right back, and then some. It is nice to know there is another answer.



Starting Over WITH Gluten??

Starting over with gluten is not something I am looking forward to because I have been feeling so much better these past 5 days without gluten. My energy level has been through the roof and my insides have been at peace for the first time in a long time.

In order to be tested for the tTG Antibody, the clinic would like me to go back on a gluten diet for the weekend, and the test will be done Monday morning. According to www.celiac.nih.gov/ (National Institute of Health), the "tTG test has a sensitivity of more than 90 percent, yielding few false positive results. The test also has a specificity of more than 95 percent, meaning it yields few false negative results."

These tTG (tissue Transglutaminase) antibodies are usually found in patients with CD, and are also found with juvenile diabetes. They are involved in the destruction of the precious villi in my intestines, that absorb nutrients. If these antibodies are detected at a level greater than 19 units, it suggests the "possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis" (www.aruplab.com/guides/ug/tests/0097709.jsp).

Though I am not looking forward to it, I am willing to do it for the sake of finding answers... it is just not good timing. Today is Thursday, and I have to eat gluten for the next three days, and those three days are very full for me. I have two final exams due by Saturday, and my girls are dancing in two performances of a Christmas recital on both Saturday and Sunday... and I may be too sick to attend by then.

Well, it was nice being gluten-free while it lasted! Even if this doesn't pan out to be CD, I have no reason to continue a gluten diet that makes me sick until something else happens.

Celiac and Vitamin Supplements

One of the questions that I have been mulling over, is whether I am wasting my money in continuing to take vitamin supplements if CD has made my body unable to absorb nutrients.

For the past several years, I have taken several vitamin supplements rather than one multivitamin. I have regularly taken Iron, Evening Primrose with Black Currant Seed Oil, CoQ10-100, Biotin, Resveratrol, and Lithium Orotate (5 mg), and a variety of others depending on my budget (Licopein, for example). When I became very ill in late October, I stopped taking all supplements, stopped taking any OTC medicines whether for pain or allergies, and also completely altered my diet, eliminating diet caffeine sodas (and all sodas), fatty or fried foods, and sugar.

Being overwhelmed with fatigue for the past couple of months, I have started taking iron supplements again, and would like to go back to my other supplements as well. For some reason, I am thinking that these extra vitamins may be what kept me somewhat healthy during such stressful times. But am I just throwing my money away if my body can't absorb the nutrients anyway?

I did some research and was directed back to the website I have listed here in "Helpful Links," Celiac.com. I found an article by Jefferson Adams called "Do Vitamin Supplements Benefit Celiac Patients?" (03/10/2009). Adams states that "B-vitamin supplements are helpful in raising vitamin B6, B12 and folate levels and in reducing homocysteine levels in people with celiac disease." It also goes on to say that people with CD may have higher rates of hyperhomocysteinemia-- which I had to look up-- due to low levels of folate and vitamin B12.

Hyperphomocysteinemia (according to my old nursing school books) is simply too much homocysteine in the blood. Basically, homocysteine is a protein waste product--in fact it is an amino acid itself (proteins are amino acids), and it creates little 'irregularities' inside the surface of our blood vessels. The problem is that these little irregularities tend to snag fats which in turn begin to build up in our arteries. Too much homocysteine can lead to coronary disease, stroke and peripheral vascular diseases. In fact, it can damage the inner lining of the arteries and in turn may end up causing blood clots.

The American Heart Association says that:


"Several studies have found that higher blood levels of B vitamins are related, at least partly, to lower concentrations of homocysteine. Other recent evidence shows that low blood levels of folic acid are linked with a higher risk of fatal coronary heart disease and stroke."

Adams (Celiac.com) reminds us that:

"The best way to prevent Hyperhomocysteinaemia is to eat things that contain B6, B12, and folate such as potato, greens, beans and fish."

In his article, Adams states that a team of researchers set out to evalutate the effectiveness of vitamin supplements for B6, B12, and folate on homocysteine levels in people with CD (check Celiac.com for specifics). What they found was that those with CD who used vitamin supplements had higher blood levels of vitamin B6, and folate, and that they also showed lower levels of plasma homocysteine.

Ultimately, the study "confirms earlier studies suggesting that both the presence and severity of celiac disease determined homocysteine levels" and "the regular use of supplemental B vitamins resulted in higher levels of serum vitamin B6, folate, vitamin B12 and lower levels of plasma homocysteine in patients with celiac disease" (Adams).

So I do believe I will continue taking my Biotin supplement because it also contains vitamins B12, B6, B2, and B1 and others. According to Adams, B vitamins seem to offer some protection against the death of the villi in my intestines. It could very well be that I didn't develop the adverse affects of CD earlier because I have had these supplements in my system for the past few years. As my budget waned through this financially stressful year, I was taking fewer supplements, often skipping days without them. And then my body said "OK, can't do it anymore. Wake up and recognize the problem."

Today I have an appointment at the clinic, and will present my ideas and lifelong symptoms. Until now, I had never made the connection between my health and anything wrong because to me it was normal-- it was all I knew. I adapted and moved on, just like every other kid with something wrong. And because the symptoms of CD are so diverse, it is no wonder that nobody else caught it earlier, either.
If you are interested in where I buy my vitamin supplements, I buy them from Andrew Lessman's ProCaps Laboratories. I like these supplements because they are all natural with no additives or fillers and contain no gluten, etc. They can be purchased on Autoship, which means they will be shipped to me regularly, or I can delay and change the shipment times. And the best part is that they are affordable.

Wednesday, December 16, 2009

Symptoms of Celiac

There are so many symptoms that can be connected with CD, it seems almost impossible to diagnose. It is no wonder so many people do not receive a proper diagnosis until their particular combination of symptoms can no longer be ignored.

I found a website called Gluten Free Works, which has an extremely comprehensive list of symptoms of Celiac by body sytem. I have listed here only the symptoms that pertain to me, or to my children:
  • Weight Gain (unexplained): I gained almost 20 pounds in a year without any significant changes in my diet. I thought it was just my age.
  • Abdominal bloating
  • Abdominal pain
  • Nausea
  • Heartburn
  • Allergic Rhinitis
  • Urticaria, chronic (hives)
  • Eczema
  • Koilonychia (Thin nails that flatten, ends progressively turning up instead of down): I have noticed over the past three months at least, that I cannot seem to grow my fingernails. They are either too soft or too brittle. Lately, the tips of my nails (not all of them) are bending upward. So I cut them and they are extremely short.
  • Nails, Dry and brittle that chip, peel, crack or break easily
  • Seborrhea
  • Thin hair: My hair has always been thin but lately I seem to be losing even more hair.
  • Anxiety
  • Chronic Fatigue Syndrome
  • Depression
  • Headaches
  • Inability to concentrate
  • Insomnia
  • Irritability
  • Migraine
  • Tremors
  • Nightblindness
  • Urinary Tract Infection (Kidney infections in my case)
  • Amenorrhea
  • Late Menarche (I was 15 years old)
  • Complications during pregnancy: During my first pregnancy, I lost more weight than I gained. By my fourth pregnancy, I was so extremely ill I was very nearly ketotic. I could not tolerate either food or water.
Many of the above symptoms I have also seen in my children, plus these additional symptoms:
  • congential anomalies
  • Autism and learning disorders
  • ADHD
  • Gums bleeding/swollen (red in children)
  • Lactose intolerance
  • Asthma
I am fairly certain the majority of my children also have CD. Am looking forward to finding answers.

Muscle Spasms and Celiac Disease

I have always been a very pale, colorless person. It's why I wear so much makeup! Without my makeup, I am all one color, with the exception of my eye color.
According to the Celiac Sprue Association, pallor is one of the many symptoms of Celiac Disease. Here is a list of symptoms that they say the doctor will look for:
  • emaciation
  • pallor (due to anemia)
  • hypotension (low blood pressure)
  • edema (due to low levels of protein, [albumin] in the blood)
  • dermatitis herpetiformis (skin lesions)
  • easy bruising (lack of vitamin K)
  • bone or skin and mucosa membrane changes due to vitamin deficiencies
  • protruding or distended abdomen (intestine dysmotility)
  • loss of various sensations in extremities including vibration, position and light touch (vitamin deficiency)
  • signs of severe vitamin/mineral deficiencies which may include:
    -diminished deep tendon reflexes
  • muscle spasms (magnesium and/or calcium deficiency)
  • bone tenderness and bone pain (due to osteomalacia)
I find this an interesting list because the reasons behind the symptom are also listed. For example, I have always had fairly low blood pressure, and that is on the list as "hypotension." Besides the strange rashes, I also bruise quite easily ("lack of vitamin K"), and the muscle spasms are also present ("Magnesium and/or calcium deficiency").

One of the symptoms that has been bothering me more and more are the muscle spasms at night. Prior to the worst of my illness (prior to going to the ER) I had been having weird spasms and tremors when I went to bed at night. Most of the time I felt it in my neck, especially while laying on my left side. For the past couple of months, the tremors/spasms have increased to the point of lasting longer than a minute or so. They will also tend to travel around, sometimes in my lower abdomen, sometimes in my chest, sometimes in my neck, regardless of my position while lying down.

Last night, I was almost asleep when I noticed the spasms again, but this time it lasted much longer and seemed to encompass my whole esophagus (chest area) and up and down my throat and neck. It just kept going and going. But I was so very sleepy, I don't remember if I fell asleep or how long it continued.

Tomorrow I have an appointment at the clinic, in which I will discuss my 'findings' over the past several days, and discuss these spasms and tremors.

Can a person with CD take vitamin supplements, or is it fruitless since the intestines are not absorbing nutrients anyway??

Numbing/Tingling sensations with Celiac

Last night, the girls and their dad really wanted pancakes for dinner. I didn't have any gluten-free pancake mix yet, and so they went to IHOP, and loaded up on pancakes. This morning, every one of the girls was sick. Note, this is not the first time-- we have always gotten sick after eating there, and now I suspect it is the overload of gluten in those giant pancakes!!

Today has been a good day for my stomach. With only minimal stomach soreness, I added a little more to my 'bland' diet to test out eating a little closer to normal, all the while staying gluten-free.

Grocery shopping is going to need some revising. I went to Wal-Mart to pick up a few things and check out what they might have that is gluten-free. The store is so full of so many tempting items-- things that are small, quick, tasty-- and 99% not gluten-free. I won't be able to take the kids through the grocery aisles. It will be best to steer clear from the temptations, or do the grocery shopping at a smaller, more selective store. I really wish there was a gluten-free store in town.

I discovered a couple more wonderful websites today. One is called Gluten Free Mommy, and is full of terrific recipes and ideas that I can't wait to try! I have been busy scouring through a couple of gluten-free recipe books that I have, as well as many recipes online. I really like the Gluten Free Mommy because her recipes are the closest to "normal" that I have seen. For example, just when I was thinking I would have to give up our traditional holiday green bean casserole this Christmas, I found her website and lo and behold, there is a recipe for it! Yay!! Thank you, Gluten Free Mommy!!

Another great website I came across today is called The National Foundation for Celiac Awareness. It is full of all kinds of information and even has a Celiac Disease symptoms checklist with you can take to find out if you might have CD or gluten intolerance.

Something that I found interesting on the website: Celiac Diseas Symptoms Can be Elusive--

"There are more than 300 symptoms of celiac disease, and symptoms may vary amongst different people. One person might have symptoms of diarrhea and abdominal pain, while another person has irritability or depression. Some patients develop celiac symptoms early in life, while others feel healthy far into adulthood. Some people with celiac disease may not show any symptoms. These differences can make celiac diagnosis extremely difficult resulting in 95% of celiacs undiagnosed or misdiagnosed with other conditions."

They point out that it is important to be treated because complications can develop that include other autoimmune diseases,thyroad disease, osteoporosis, and even cancer. The website lists several different symptoms, including the following:
  • Bloating or Gas
  • Diarrhea
  • Constipation
  • Fatigue
  • Itchy Skin Rash
  • Tingling/Numbness
  • Pale Mouth Sores
  • Joint pain
  • Delayed Growth
  • Poor Weight Gain
  • Thin Bones
  • Infertility
  • Headaches
  • Depression
  • Irritability
  • Discolored Teeth
I was particularly interested in the "Tingling or Numbness" because this is a symptom that seems to throw so many of the healthcare workers off. According to this website, "Tingling and Numbness are abnormal sensations that can occur anywhere in your body. It is a sensation of tingling, pricking, or numbness of a person's skin with no apparent long-term physical effect. It can also be described as 'pins and needles' or referred to as a limb being 'asleep.'"

When I was experiencing this sensation, it usually happened in both my hands and feet, sometimes including my forearms, and from the knees down. Sometimes I could even feel it move in waves through my body to my extremeties. It was as if my hands and feet were trying to fall asleep. If you've ever had your blood pressure taken and the cuff begins to tighten, you feel the congestion in your arm and your wrist may feel numb-- that is often how I felt. It was most frequent during the first 4 or 5 weeks of my illness.

PLEASE SEE THE WEBSITE FOR COMPLETE INFORMATION!

Gluten-Free: Seeing the Benefits

I have found it amazing that my mental energy seems to be through the roof these past couple of days. If it weren't for some slight stomach soreness, I'd be buzzing around the house like I'm on some kind of caffeine high. Is mental clarity a benefit of a gluten-free diet?

I'd also like to say I'm in a much better mood because I have been so irritable in the past (attributing it to stress and age-related problems). Perhaps my mood is elevated because I am finally feeling like I might have some answers. Or perhaps it is because I am not feeling sick and miserable and like my life is coming back, little by little.... or maybe I never really had control of my health in the first place, and so this is a new feeling. For lack of a better description, my insides feel like they are at peace.

The more I have researched Celiac Disease, the more various little bits of information throughout my life are beginning to fit into the picture. When I was a child, for example, I was always the scrawny one in my class. I was so skinny, I was usually one of the smallest. I was horrible at P.E. and the last picked for any team, because I had no muscular strength. I was not only the scrawniest kid, but also the weakest kid-- so much so, that my classmates often poked fun at me.

As a young adult, I was always told that my skin problems were a vitamin deficiency-- the skin on my fingertips would peel, or there would be some sort of rash on my arms or legs. I went to a dermatologist once to get a definitive answer once and for all. He came in to the room greatly bothered for some reason or other, took one look at my fingers, and said "wear gloves" and left.

During my pregnancies I was always on prenatal vitamins, but still had trouble keeping my iron levels up. And at my post-pregnancy checkups, I was told to continue vitamin supplements because I apparently still needed the folate and the iron. One doctor retested my levels and asked if I was taking supplements. When I told him yes, he told me to go back on prenatal vitamins because they were in larger amounts. Over the years, I have been told from one doctor to another to take iron supplements. To the best of my knowledge, I have not been tested for other vitamin deficiencies.

Some may wonder, what are you going to do if you get tested and it turns out you don't have CD? Well all I can say is that I know what works for me at this time in my life, and that is a gluten-free diet. Perhaps it is simply an allergy to wheat: the treatment is pretty much the same-- going gluten-free. If it is another kind of stomach disorder, at least I still know what makes it feel better-- at least for now. And I will continue my daily life, one ailment or symptom at a time, just as I always have in the past. I've always believed we must learn from our life, and live. Look for the bright spots, no matter how small.

Tuesday, December 15, 2009

Liver Enzymes and Celiac Disease

One of the first results I learned from the blood tests done while in the ER two months ago, was that two of my liver enzymes were elevated. They were not extremely high, just elevated. Doing a little more research into the connection between elevated liver enzymes and celiac disease, I came across the website Celiac.com.

In a nutshell, here is what I found:
  • Liver abnormalities are fairly common in newly diagnosed CD patients.
  • Gluten toxicity and increased intestinal permeability can cause liver abnormalities.
  • Serious liver disorders, including cirrhosis, have been found in association with a number of CD cases, and get better with maintaining a gluten-free diet.
  • Unexplained aches and pains and other symptoms and disorders which have frequently been reported by some celiacs may be a result of liver dysfunction.
  • It is not clear whether some damage to the liver may remain long term even after maintaining a gluten-free diet.
"Elevated liver enzymes are the result of liver enzymes released by damaged liver cells. ... A gluten-free diet for 1 to 10 years resulted in complete normalization of liver chemistry tests in 95% patients."
This particular article from which I gleaned this bit of information was written by Roy S. Jamron, who holds a B.S. in Physics from the University of Michigan and an M.S. in Engineering Applied Science from the University of California at Davis. He independently investigates the latest research on celiac disease and related disorders.




PLEASE VISIT THIS WEBSITE FOR COMPLETE INFORMATION:
Celiac.com is protected by Copyright 2009 Celiac Disease & Gluten-free Diet Information Since 1995 - Celiac.com. All rights reserved.

More Research

What kinds of tests are involved with the diagnosis of Celiac Disease besides a biopsy?
The Celiac Sprue Association states that a number of tests should be done. Sometimes they are referred to as the Celiac Blood Panel and will consist of (but not limited to):
Serologic Tests:
  • EMA (Immunoglobulin A anti-endomysium antibodies)
  • AGA (IgA anti-gliadin antibodies)
  • DGP (Deamidated gliadin peptide antibody)
  • tTGA (IgA anti-tissue transglutaminase)
  • Tolerance or Measure of Digestion/Absorption Tests
  • Lactose tolerance test.
  • D-Xylose test.
Lab Tests Online suggests the following tests to determine the extent of the severity as well as damage done to other organs by CD:


  • CBC (complete blood count) to look for anemia
  • ESR (erythrocyte sedimentation rate) to evaluate inflammation
  • CRP (C-Reactive protein) to evaluate inflammation
  • CMP (comprehensive metabolic panel) to determine electrolyte, protein, and calcium levels, and to verify the status of the kidney and liver
  • Vitamin D, E, and B12 to measure vitamin deficiencies
  • Stool fat, to help evaluate malabsorption
Additionally, Anti-tTG, AGA, and/or EMA tests may be ordered at intervals on patients to monitor the effectiveness of a gluten-free diet.

The good news for me, is that several of these blood tests were taken when I was in the ER and at subsequent visits to the clinic, so perhaps they may shed some light on my particular case. Also, because I have had no gluten (that I know of) for three days now, I may not have to go back on a gluten diet. At least, that is my hope!!
The same source also states:
"If the person being tested has not consumed any gluten for several weeks prior to testing, then celiac disease tests may be negative (although this may require many months of gluten-free diet). "


The Journal of The American Academy of Physician Assistants points out that:
  • Instead of having diarrhea, many patients with celiac disease may be asymptomatic or report atypical GI complaints such as constipation, abdominal pain, or lactose intolerance.
  • A substantial number of patients with celiac disease initially receive a diagnosis of irritable bowel syndrome.
  • Most patients with celiac disease never receive a diagnosis.
The Journal also states that the disease is roughly 3 times more prevalent in women, and that a large number of patients actually receive a diagnosis of IBS before CD is identified.

It is nice to know that even those who are not showing active symptoms of CD can be tested if they have a close relative with CD. If mine ends up being positive, I want my kids tested, and it may give incentive for my siblings to also be tested.




PLEASE VISIT THESE WEBSITES FOR COMPLETE INFORMATION:
Celiac Sprue Association is protected by Copyright © 2008 Celiac Sprue Association/United States of America, Inc. (CSA)

Lab Tests Online is protected by Copyright © 2001 - 2009 by American Association for Clinical Chemistry.

The article from the Journal of American Academy of Physicians Assistants was published in December, 2009.

Researching Celiac Disease

According to the National Digestive Disease Information Clearinghouse National Institute of Health), Celiac Disease is genetic, meaning it runs in families.

I received an email from my mother earlier today, and she happened to mention that one of my sisters had been to visit my parents over the weekend. My sister, who has been dealing with digestive problems (and liver), became ill after eating at a business dinner party the night before. Usually very careful about what she eats, something was slipped into her food that may have had traces of something to which she is very sensitive or allergic. Her son (my nephew) has also been suffering from something that sounds like colitis.

My brother was recently diagnosed with ulcerative colitis, and my mother has suffered with chronic digestive problems for many years. Her cousin also has a very restricted diet, and the list of relatives with digestive problems goes on. She was thinking there may be a genetic link that makes us all susceptible to these types of problems. I believe there is, and I want to know if it is Celiac Disease, or gluten intolerance (treated the same).

Though people may test positive for CD, they don't always develop a full-blown version. According to the source above, "Sometimes the disease is triggered -- or becomes active for the first time-- after surgery, pregnancy, childbirth, viral infection, or severe emotional stress."

Well, that kind of says a lot for my personal story: My husband suffered a massive heart attack early in the year, and we almost lost him. It was so bad it took 12 shocks to stabilize the heart, and he spent a week in the ICU. We had no incoming money and no savings to rely on, and no health insurance. During the following months we encountered one serious setback after the other. Every week I thought I was going to have a nervous breakdown. After the heart attack, the cardiologist told me I might need help with Post Traumatic Stress Disorder. Maybe my level of stress triggered my digestive issues.

The same source also lists 12 other symptoms that can accompany CD:


  • unexplained iron-deficiency anemia



  • fatigue



  • bone or joint pain



  • arthritis



  • bone loss or osteoporosis



  • depression or anxiety



  • tingling numbness in the hands and feet



  • seizures



  • missed menstrual periods



  • infertility or recurrent miscarriage



  • canker sores inside the mouth



  • An itchy skin rash called dermatitis herpetiformis


  • Ever since my trip to the ER in late October I have been telling doctors and nurses that my extremities were tingly and numb!! They usually look at me in a very puzzled way. Only one nurser practitioner brought up the possibility of a wheat allergy or Celiac Disease. I have seven of those symptoms listed above. Dental enamel defects are also common (something I've had all my life). If that is not enough, when I was small people were always telling me I was malnourished. Even into adulthood doctors would tell me to take vitamins because I always seemed deficient, and had a hard time keeping my iron levels up.
    On top of that, in an effort to find out what happened to my "missing periods" (as listed here in the symptoms) I underwent an endometrial biopsy just yesterday. I'd say it is time to get back to that thought of possible CD again.

    Other health problems that people with CD may have include:

    • type 1 diabetes
    • autoimmune thyroid disease
    • autoimmune liver disease
    • rheumatoid arthritis
    • Addison's disease, a condition in which the glands that produce critical hormones are damaged
    • Sjogren's syndrome, a condition in which the glands that produce tears and saliva are destroyed.


      "Long-term complications include malnutrition-- which can lead to anemia, osteoporosis, and miscarriage, among other problems-- liver diseases, and cancers of the intestines."


    Currently, I am faced with the blood tests. In order to test for CD, I will have to return to a gluten diet, which I am not looking forward to, but willing to do to get a definitive diagnosis.


    The NDDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health. Please visit the website for complete information.

    Going Gluten-Free

    Saturday morning, I woke up and fixed myself a breakfast that I thought would go down well. I have been having pretty regular stomach pain and indigestion for months, but only in the past two months had it worsened considerably. I even ended up in the ER, thinking I was having a heart attack, which I couldn't comprehend since I didn't really have the risk factors.

    Two months ago, in a drastic attempt to find out what was wrong with me (after my little stint in the ER), I started drinking only water, stopped eating sugar and processed foods, and almost all meat (except for small portions of white chicken meat, no skin). I also stopped eating anything fried, and stopped eating fatty foods, and stopped taking all OTC medicines and vitamin supplements. On top of that, I started monitoring everything I ate, and kept track in a food/symptom journal. I ate foods that were supposed to reduce heartburn and acid reflux.

    But the stomach pains never really went away, and I had a low-grade fever almost every day. My back was also beginning to bother me, but I thought it was just poor posture hunched over the computer all day. Three weeks after the ER, still on a very strict diet, I became very ill with a kidney infection. I took cipro antibiotics for five days, and felt quite a bit better.

    But still, the stomach pains never really went away. Some days were good days and some days were bad days, and I never knew what kind of day I would have from one day to the next. I couldn't plan anything, and since it was peak holiday season, it was a very difficult time.

    So what did I have for breakfast three days ago that sent me on this new journey? Homemade blueberry toast with a small pat of (real) butter. Within 45 minutes, I was hit with a sudden wave of nausea, a bad stomach ache and painful back ache. Within 15 more minutes I was feeling very weak, and was trembling. 15 more minutes later, I had a 100.4-degree fever and was sick to my stomach. Being a Saturday, the clinic was closed, and I knew something was wrong. I kept running to the bathroom, thinking I could "push it out" because my whole abdomen was hurting so bad.

    I thought maybe I could try some Pepto-Bismol, but the label said not to take if you have a fever, or an ulcer (still an unknown for me at this point), but we called the hopsital and the nurse said it was okay to take the Pepto-Bismol, and some Tylenol for the fever, which I did because my fever was still rising. I felt a little better, but my stomach was still very sore. Needless to say, I was afraid to eat anything.

    When I did eat during the day, I stuck to my now "usual" strict and bland diet, yet it was becoming all too clear to me that this diet wasn't the answer to my digestive troubles.

    I laid on our inversion table (at 60-degrees) for 15 minutes, which seemed to alleviate the back pain quite well, but still had a serious knot in my stomach for the rest of the day. In fact, I had noticed that the sore "area" in my body was shaped like a giant teardrop, the tip of the tear being between my lower ribs, and the round "bowl" of the tear extending below my navel, encompassing the pelvic basin.

    I couldn't sleep that night because I couldn't seem to find a comfortable position. I woke up on Sunday with both stomach pain and back pain. I was feeling nauseous and bloated, just like the day before. Only this time I felt like my abdomen had been run over by a truck-- it felt sore, but like an old injury, rather than anything new.

    I decided that during that day (Sunday) I would not eat any gluten and see what happened. I researched the foods that I could eat without gluten and stuck to those kinds of foods: dried mangoes; fresh apples; mashed potatoes; peas; foods of that basic nature. And guess what? Though my stomach was sore, there was no new hurt, no new inflammatory-type pain, no new intestinal distress.... just peace, for the first time in a long time.

    I did the inversion therapy again for 15 minutes to alleviate the back pain, and it worked quite well. I also practiced yoga breathing and some simple yoga movements, which I started as an attempt to reduce stress a couple weeks ago. I found that I enjoy the feeling I get with the yoga breathing and improved posture. Overall, the day was a much better day for my digestive system.

    The next day, Monday (Day 2), I woke up with a small stomach ache, --more from the 'old injury' and nothing new. I wondered how long it would take to heal a sore stomach? I had to skip breakfast because I was scheduled to get my cholesterol checked at the clinic, for which fasting for 12 hours is required. It wasn't the first time I noticed how much better I felt without food in my stomach!!

    For the second day in a row, I stuck to foods with no gluten. I also continued with the 15-minute inversion therapy sessions for my sore back. And guess what? I felt pretty good!! I even made a loaf of gluten-free bread because bread is such a big comfort food for me. All in all, not a bad day!

    Websites that I found particularly helpful:


    I hope to continue this journey until I can find answers to my digestive problems. I suspect, that if I have Celiac Disease, I may likely still have acid reflux, or even a hiatal hernia. But perhaps finding answers to one, will lead to answers to the other. We will see how this day pans out