Celiac? Or... Continue W/the Gluten?

[orlandoiam]

Hello-- 

 

I've been gluten free for almost 3 years ago up till about a week and a half ago.  I'm trying to figure out whether to continue eating gluten to be officially tested. 
 

I originally went gluten free after 3 years of antibiotics for lyme disease. I had heard that stopping gluten products might stop my symptoms and after going gluten free my symptoms did stop.  The problem is, I'm not sure if my symptoms were actually lyme disease or caused by celiac. 
 

My main symptoms with lyme (when I was not on antibiotics) were extreme fatigue, lots of brain fog, anxiety and rage, and all over disseminated body pain, electric shock like feelings running down my legs and muscle tics. My doc always said my symptoms were atypical of lyme, but since the antibiotics were helping he kept me on them.  Whenever I got off the antibiotics, symptoms would resume (thus the lengthy course of antibiotics).
 

In 2011/2012 my lyme doc stopped taking medical insurance, and I was starting to get worried about all those antibiotics. I discovered that some chronic lyme sufferers went off the gluten and managed to remain symptom free.  I went gluten free and my symptoms gradually stopped and so did a lifetime of a bloated belly.  In the beginning, I would often accidentally glutenize myself and be hit quickly with almost a full day of utter exhaustion, brain fog, irritation and all over body pain. This made me very serious about never eating gluten. Gradually, I stopped accidentally glutening myself and have felt very healthy.

 

However, as anyone who tries to stay gluten free knows, 3 years of not eating at restaurants and packing my own food everyday grows tedious and sometimes almost oppressive.   A year ago, I tried two pieces of pizza to see if I’d been gluten free long enough—I spent the next day in such a brain fog that I almost felt drunk.  So, I resumed the gluten free diet.  About a week and a half ago, I was at a work function at a fancy schmancy restaurant and hadn’t eaten enough food ahead of time, and I finally broke and had a gorgeous piece of French bread. 
 

I didn’t immediately explode as I thought I might.  I woke up the next day brain intact, so I ate some more gluten products the next day.   My mouth felt awesome.  In fact, I felt awesome till about 2 days later.  Brain fog has resumed, and I just feel spacy. The all over disseminated body pain has begun again…the exhaustion is creeping back. 

Does this sound like celiac? Should I continue to the gluten challenge?  Different websites state different amounts of time we have to ingest gluten… I see one study that states I’d have to eat it for almost 12 weeks! And then another which says 75% of celiacs will test positive after only two! 

Thank you for your feedback—my main wonder is if this all over disseminated pain and fogginess sounds like celiac.  It only comes when I’ve eaten food containing gluten…            

   

[cyclinglady]

You are in a hard place. I wish celiac disease testing was easier! You could have celiac disease but you will never know until you had the testing. I guess it might be worth it since you are doubting yourself. I am officially diagnosed, but my husband is not. He went gluten-free 14 years ago per the poor advice of my allergist and his GP. It worked. All his symptoms went away. The first year, was trial and error, but eventually he got the diet down and learned about cross contamination. He NEVER knowingly cheats. The consequences are too severe.

He'll be the first to say that I have received way more support from medical, family and friends. But is he willing to do a challenge? No way!

This is a decision that only you can make. I wish you well!

[bartfull]

I agree with Cycling Lady. It would be good to know for sure.

 

But think about that 75% thing. That means 25% of people who only do two weeks are misdiagnosed. That's a full one quarter. If it were me I would do the full 12 weeks and while you're waiting, shop around for a GOOD doctor who will do the full celiac panel.

[orlandoiam]

Thank you! I appreciate the feedback!  I think I am trying for the gluten challenge. It's been almost two weeks where I've had a little gluten everyday. 

The forgetfulness, brainfog and fatigue have kicked in 100%. 

I have read some of the frequently asked questions but maybe not them all yet.  If I go through with the challenge, AND if I am actually celiac, am I guaranteed a positive result with blood testing?  I don't want to get a false negative.

 

*Also, is one cracker a day really enough?

 

[ravenwoodglass]

I think it is usually advised to do the equivalent of 1-2 slices of bread a day for the challenge. Do make sure your doctor does a full panel and be sure it includes the DGP tests. It is possible you may still get a false negative but with the newer DGP tests I don't think that happens as much as with the older tests. I am not sure but since your symptoms are mostly neurological your chances of a false negative may be higher.

[cyclinglady]

Sorry, there are no guarantees in life!

I know there is conflicting information about how long to challenge and how much gluten to consume. My blood test results were not common as my TTG tests were negative but only the DGP IGA was positive. So, I was "mildly positive" per my GI. I consumed a lot of gluten between my endoscopy and blood tests (7 weeks). I was eating it before, but I really ramped up (ate about a loaf of sourdough bread a day and other goodies -- seriously). It was for two reasons 1) I knew in my heart that I had it and 2) I knew exactly what it meant to give up gluten since my husband had been gluten free for 12 years. I could not believe that we would both have issues and I needed definitive proof. By the time my Endo appointment came, I was experiencing gut issues besides the initial anemia. Biopsies were positive for celiac disease.

What I am trying to say is that at the expense of causing more damage, it was well worth it to make sure I got a positive diagnosis. Eating all that gluten paid off. Would I recommend that strategy to everyone? Well...that is a choice they/you have to make. You know your body best! Also a challenge should always be monitored by a doctor.

[Dougie]

If you have to eat lots of gluten I order to get tested for celiac disease. Eating a few pieces of gluten items will probably give false results.