Week 5: G-Free Recap: Overcoming the Hurdle

For 12 weeks in a row, I was sick – nearly every single day. I might have a good day or two, and then more illness would plague my body. For the first 8 weeks, I had no clue why I was feeling so sick, and hence no change in my diet. Once I tried going gluten-free for nearly a week, I felt so much better I was sure I had just diagnosed myself! But over the next 4 weeks, through trial and error, through the holidays, through sorting out misleading blood tests, and through two kidney infections, life was rough for me. I envied people who walked around "like normal" while I felt sick to my stomach all the time. 

When January 2010 hit, I determined to make sure I ingested no gluten, whatsoever, and to the best of my knowledge, that’s the way it has been. The worst things I had to deal with were a kidney infection and Chronic Fatigue Syndrome— maybe CFS was another self-diagnosis, but I had all the symptoms, and so it fit.

During the last week of January (this past week) I felt like I finally had cleared the hurdle. It was the best week in 13 weeks. Almost every day was a 100% day.

I began working out with Pilates again, gradually rebuilding my strength and my “core” for about 20 minutes a day, five days a week. I also continued to walk/jog on the treadmill at least twice a day for 15 minutes at a time, averaging a distance of just over a mile-and-a-half a day.

Though I still feel I am not completely healed and there may be some overlying complications, I do feel as though I can “rejoin the living” again. I can go to the store without worrying if I will get sick, and no longer fear being left alone ("in case something happens").

Slowly, and by degrees, I feel like I am living again, and it is a nice feeling.

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...

Chronic Fatigue Syndrome and Celiac Disease

I found an article on http://www.celiac.com/ regarding chronic fatigue syndrome and CD. I Googled this because I was wondering if there may be a connection to my own problems of severe fatigue and general malaise.

The article is called "Chronic Fatigue Syndrome (myalgic encephalomyelitis or ME, PVS, post viral fatigue syndrome or PVFS)" and discusses the connection between chronic fatigue syndrome (CFS) and CD. A British study determined that:

"Mysterious symptoms, including muscle weakness, wasting, and poor coordination and balance may be due to an undiagnosed allergy to wheat, barley, oats or rye, according to new research which may have implications for some people with ME...A study of 53 patients with these and other unexplained neurological symptoms, found that nearly three-fifths of them had antibodies to gluten in their blood...none of the patients in the Sheffield group had been diagnosed with celiac disease but when samples of tissue were removed from their gut, more than a third showed evidence of the disease or inflammation of the middle and lower gut."

So what are the symptoms of chronic fatigue syndrome? According to the Mayo Clinic, the following symptoms are characteristic of CFS: Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:

• Fatigue
• Loss of memory or concentration
• Sore throat
• Painful and mildly enlarged lymph nodes in your neck or armpits
• Unexplained muscle pain
• Pain that moves from one joint to another without swelling or redness
• Headache of a new type, pattern or severity
• Unrefreshing sleep
• Extreme exhaustion lasting more than 24 hours after physical or mental exercise

Additional signs and symptoms:

• Abdominal pain
• Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
• Bloating
• Chest pain
• Chronic cough
• Diarrhea
• Dizziness, balance problems or fainting
• Dry mouth
• Earache
• Irregular heartbeat
• Jaw pain
• Morning stiffness
• Nausea
• Chills and night sweats
• Psychological problems, such as depression, irritability, anxiety disorders and panic attacks
• Shortness of breath
• Tingling sensations
• Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes
• Weight loss or gain
  
  "If you have chronic fatigue syndrome, your symptoms may peak and become stable early on, and then come and go over time. Some people go on to recover completely, while others grow progressively worse (Mayoclinic.com)."

Wow!! Any of those symptoms sound familiar? I realize that I have every one of those symptoms, and also realize that it is most likely related to CD. I found yet another article on the connection between CFS and CD on BNet entitled "Chronic fatigue syndrome: oxidative stress and dietary modifications - Brief Article" by Alan C. Logan and Cathy Wong (Alternative Medicine Review, Oct. 2001):

"Chronic fatigue syndrome (CFS) is an illness characterized by persistent and relapsing fatigue, often accompanied by numerous symptoms involving various body systems. ...recent evidence suggests celiac disease can present with neurological symptoms in the absence of gastrointestinal symptoms; therefore, celiac disease should be included in the differential diagnosis of CFS.

"The prevalence of CD may be higher among CFS patients than in the general population."

This article states that in fact, CD mimics CFS and that all patients suspected to have CFS should also be tested for CD. While I was blaming age and hormones (or lack thereof) on my increasing forgetfulness, inability to concentrate, tremors or trembling and muscle spasms, tingling and numbness -- these neurological problems may indeed be part of CFS, and brought on by a clinically-silent case of CD before the digestive problems appeared.

So it appears that I have diagnosed myself with chronic fatigue syndrome, and that it is yet another manifestion of celiac disease. Next question: Why can't I shake myself of CFS with a gluten-free diet? And has my diet truly been gluten-free?

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?

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!

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!

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.