Week 16 Recap: Celiac or Gluten Intolerant?

Well, it’s here! Summer has unofficially arrived in Montana after our usual 7 months of winter followed by 8 hours of spring. We may get hail storms from time to time through the summer, but I don’t expect any more snow until this fall. Yet, you know what they say in Montana, never say never!

On to last week’s recap in my adventures of going gluten free…

I am actually still in the process of determining whether I even have celiac disease or not. We are in the final throes of testing—the genetic screen has been sent to California to determine whether I have the gene for celiac or not. The results should arrive later this week. All other tests and biopsies at this point in time are normal.

My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.

ODD THINGS THIS WEEK:

• Some twitching and slight thumping in chest, followed by slight pain to left of sternum as well as left subclavian and achy left arm.
• Very slight fluttering in chest several different times this week
• One morning, while eating my morning yogurt, my tongue started tingling. Not long after, my hands were feeling numb and flushed.
• Late in the week I experienced a painful double heart palpitation which caused me to cough, while sitting on my bed working on my laptop.

My “physical therapy” went very well this past week even though I was not able to spend as much time with Pilates as I normally do. All my treadmill walks (two daily 30-minute walks, 6 days a week) went very well and I did not feel stressed or tired, or pain in any way… pretty much normal walks. Exercise totals for the week include 60 minutes of Pilates, 30 minutes of weight-bearing exercises, and 18.66 miles walked.

Though I can only speculate what my serology results and biopsies would have shown three or four months ago when I first suspected celiac disease, my current lab results are all completely within the normal range for everything.

The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:

“Celiac disease patients with lesser degrees of villous atrophy are less likely to have positive celiac serologies” (“Digestive Disturbances and Science,” 2004).

"Recent literature data showed that serology (not only EMA, but also anti-tTG) seems to be ineffective in detecting most patients affected by subclinical/silent disease" -- i.e., gluten sensitivity rather than celiac disease ("Digestive and Liver Disease," 2007).

"If eliminating gluten from your diet results in your body feeling better, that is a positive test" (Dr. Vikki Peterson, DC, CCN, Founder of HealthNOW Medical Center, 2009).

Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?

Week 4 Recap: Don't Let This Happen To You!!

DON'T LET THIS HAPPEN TO YOU!!! If you are taking a medication that does not make you feel better, tell your medical provider!! Carefully research the side effects of the medication and see if any of it applies to you, and don't be afraid to tell your medical provider of your suspicions!

Here is my story:

Still feeling as if I'd had some kind of mild virus for a very long time, and still maintaining a seemingly perpetual fever, I went to the local clinic and asked to be tested for an infection. While I was getting ready to go, my heart suddenly began pounding and racing! I checked my carotid pulse and it was 126 beats per minute (bpm). That was something strange! I had been sitting down!

The heart pounding happened again while I was sitting in the treatment room at the clinic. My heart felt like it was pounding so fast I thought I might pass out! Luckily, the PA came in, and had me lay down for an EKG-- which of course-- showed nothing. By the time they had the electrodes on, my heart was fine.

My urinalysis showed a very small amount of bacterial growth, and as a result, I was put on Ciprofloxin, and Phenergan for the nausea. I was not happy about going on the Cipro because it made me feel so depressed the last time. I hated the way it made me feel, and staying on the Cipro seemed to be worse this time around. I was continually teary-eyed and fearing the worst. I stopped taking the Phenergan after the first day because I couldn't function in such a fuzzy-headed mode.

On a positive note, I decided to take my health into my own hands again, and cleared off the clothes that had been hanging on my treadmill and walked very, very slowly (1.5 mph) for 4 minutes. That was about all I could do because it took so much effort to do the smallest things. Over the rest of the week I was able to increase both the time spent walking, and the speed.

In the meantime, my kidney infection symptoms seemed to clear up, and the flushing and tingling subsided. Yet, everything I did seemed to require monumental strength and stamina which I just didn't have. I felt shakey and nervous and my hands and arms were sluggish in doing what I asked. My heart felt so weak! It felt as if my heart had a virus of some kind.

After a handful of days on Cipro, I still wasn't feeling any better. Why did I still feel like I had the flu? Why did I feel so weak? Why was I still feverish? On top of that, staying on the Cipro began to make my heart hurt. My digestive system was peaceful, but the rest of me still felt like I was battling something else.

We called the clinic and explained that I thought the Cipro might be making me feel worse. After being sick for so many weeks, I had reached my tether. I was an emotional wreck, in constant tears, and my heart was palpitating more and more. I felt so frustrated that it never occurred to me that these might be side effects of the Cipro!

The clinic told me to stop the Cipro, and instead decided I was depressed and put me on Celexa, an anti-depressant. I stated that I didn't want to be on any mood-altering drugs, and here they wanted me on it for a minimum of six months for clinical depression!

The pharmacist suggested I start with half of a Celexa and I am glad I followed that advice!! I had gone downstairs to start the washer, went back upstairs, and suddenly became extremely groggy and dizzy. I thought I would lay down, when a sudden sensation of intense heat shot straight up through the left side of my chest straight up into the left side of my neck and straight up into my left jaw. My heart was pounding, I was feeling dizzy and very flushed; my arms and legs were trembling. I kept trying to breathe through it, but my mouth dried up completely and my throat hurt because it, too, was dry. I also developed very bad stomach cramps.

After spending about 10 minutes trying to breathe through it, I asked one of my kids if she could send her dad into the room, and he saw immediately that something wasn't right. He called the clinic and told them he thought I might be having an allergic reaction to the celexa. She told him that if it didn't improve to go the ER.... which is exactly where I ended up. I couldn't even walk very well because my legs were so wobbly!

Once at the ER, the doctor did a full exam on me (for the first time anyone had done since getting sick last October), and ran another panel of blood tests, including one for celiac antibodies which came back normal-- indicating again that there was no celiac disease (Don't be fooled by this. More about this later!)

Once off the Cipro, it didn't take much longer for me to make the connection between the side effects (www.rxlist.com/cipro-drug.htm#) and the weapiness and depression. I realized that the clinic was giving me a medication for a side effect! They were treating a side effect with another pill!! I am so grateful for the bad reaction to the Celexa.

As I said in the beginning: DON'T LET THIS HAPPEN TO YOU!!!  Happily, I never went back to Celexa. The whole week was insane. All I wanted to know was if I could eat gluten or not!

By degrees, my days began to improve. I wasn't 100% yet, but felt I was up to about 80%, which was wonderful considering how I had been feeling before. During the week, I eventually worked my way up to 8 minutes on the treadmill, three times a day, keeping it at a fairly slow walk.

Unbeknownst to me at the time, my husband had talked to someone at the hospital and told them he wanted me to see someone who was "smarter than my wife." An appointment was made for me to see a specialist in Internal Medicine, which thrilled me to no end. I believed I would finally find some answers!

More to come...

Week 3: Recap

I would not be honest if I said that since I have been gluten-free, it has been smooth sailing.  In fact, it has been quite the contrary.  After the holidays, and since my last recap, I can honestly say that to the best of my knowledge, I have been 100% gluten-free.  It was only until I made absolutely sure that everything I put in my mouth was g-free, that I could even begin to recover.

Early on, however, I continued to feel nauseous from time to time, feeling some chest congestion and tightness and daily headaches.  I still did not know the results of my blood tests (tTG) or even what my cholesterol numbers were. Was this nausea and general malaise part of celiac disease?

At the same time, I was feeling the symptoms of another kidney infection caming on-- including the same back pain on the same left side. My skin was tingling and flushing again, and it seemed like some of the symptoms that sent me to the ER last October were returning. I couldn't shake the feeling that I was coming down with something. I was feeling flu-like again. Worse, I was beginning to doubt my original self-diagnosis of celiac disease. What else could it be??  I did more research, wondering just how much time would need to go by before I would feel the benefits of being g-free.

I found that:

"Greater than 90% of those with celiac disease have improvement in symptoms within two weeks of starting a gluten-free diet (CeliacDisease.net)"

So I determined to give it more time. After all, if celiac was present in my body all these years, it was certainly going to take some time to heal. Digging around on the internet a little more, I found a chart on Celiac.com in which 19 members posted how long it took for their symptoms began to subside. I have borrowed that chart and posted it here.  Clearly it is not a scientific poll in the annals of the medical community but it represents that recovering from celiac complications does take time.

I finally called the clinic to find out the results of my blood tests. The tTG came back as less than 1.2, while the standard for having celiac is a minimum of 4. This was discouraging news indeed, because if I didn't have celiac, what did I have?? On the other hand, my cholesterol was at 162 and all numbers within that score were healthy.


Needless to say, this was getting very frustrating for me. Did this mean I had GERD after all? Then why is it that it didn't seem to matter what I ate, no matter how bland? It didn't matter what I ate or when I ate it-- if I ate it, I felt bad. All I knew was that it had to be food related.

Doubting my own diagnosis of CD, I resolved to go back to eating gluten-- after all, if the tTG was negative (normal), what did it matter? I must not have CD after all.

I ate a roll.

I figured that in order to rule out celiac disease, I would simply have to incorporate gluten into my diet again.

It was not a good time. It wasn't long before stomach hurt-- the same familiar "gluten stomach ache" I had experienced before. I was so frustrated. I couldn't do anything-- I couldn't clean the house, I couldn't cook, I couldn't take the kids to their appointments during the day, I couldn't do my homework, and it was all I could do to just get out of bed.

Week 3 was a difficult week, but not as difficult as the week to come...

Week 2: G-Free Recap

Getting through the holidays completely gluten-free while still trying to figure out how to live g-free has proven very difficult. Though I am eating g-free to the best of my abilities, somehow something is still creeping into my diet that is not allowing me to return to that wonderful feeling those first five days I went completely g-free. I seem to have a chronic stomach-ache, a general feeling of malaise, and extreme fatigue.

I am sure that my fatigue is due in part to the fact that I wake up every night for hours before finally falling asleep shortly before dawn, only to get up an hour or so later. Yet I remember when I first went g-free, I had an amazing energy level for which even a sleepless night seemed of little consequence-- I still felt energetic!

Over the New Year's Eve weekend, the only foods I ate that I did not know for certain contained gluten were Tostitos chips and Sour Cream & Onion chips-- but I did read the ingredients and couldn't find anything off-limits to a g-free diet. Additionally, I grabbed a few Hershey's Kisses from time to time (which are supposed to be g-free). Those are the only foods I've eaten differently than the first five days I went g-free and felt great.

So this third week I will eliminate chocolate, and of course have not eaten chips since New Year's and won't again without knowing for certain that they are g-free. On top of that, I hope to find some answers to a couple of blood draws: my cholesterol (which was done three weeks ago) and hopefully the results to the tTG test which would indicate the presence of celiac disease. If I don't receive any news by Wednesday I will go ahead and call the clinic.

In the meantime, I deal with what feels like chronic fatigue syndrome on a daily basis. I wonder if this is yet another aspect of CD? And why is it taking so long for me to recover from a gluten diet?

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.

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!

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.