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Possible Celiac Disease?


polkflguy

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polkflguy Newbie

Ok first let me start out by saying I know I should and plan to see a doctor when I can afford it with that said I need to ask if anyone thinks this is possibly celiac disease.

My very first symptom was a burning in my stomach (left side) and heartburn, I was put on a PPI and diagnosed with GERD.

The ppi does help the burning and heartburn however recently as in about Nov of 2009 I started experiencing many symptoms and by researching found out about celiac disease.

The main symptoms that really bothered me at this time was gas and bloating and constant stomach noise. Now I tend to have diarrhea a lot and when I have bouts of diarrhea I usually get tingling in my hands and strange intermittent buzzing in my feet approx 3-6 seconds apart.

After finding out about celiac disease and having an extremely bad episode with pizza I decided to try a gluten free diet for 2 weeks. I felt great I only ate fresh fruit, vegetables, and meat for my meals and I felt 100% better no doubt about it!!

Anyway after two weeks I decided to grab a subway flat bread sandwich to see what reaction I may have if any. Within 1 hour I was in the restroom in misery and felt bad for a couple days after with tingling / buzzing. The best way I can describe it was it felt like food poisoning WITHOUT nausea and vomiting. Make no mistake this was not food poisoning this would happen to me right now if I was to go out and eat a pizza at Papa John's or ANYTHING from subway.

Symptoms are

Gas, bloating, constant rumbling

Heartburn

Tingling in fingers

Buzzing in feet

Headaches

Joint pain (right ankle right hip/back)

Chronic diarrhea until I alter my diet to high protein, fruits and veggies

At one time before my stomach trouble I developed this terrible burning blistering rash on my lower back the right side at the time I was terrified that I may have herpes or something, this rash came about after a long night of drinking "beer" but I never thought about the possible connections and later my father had the same problem after a night of beer in almost the exact same location I had it. He has no other symptoms that I know of.

Another interesting fact is that my little brother who lives 1200 miles away from me has been experiencing similar symptoms as mine for well over a year I know celiac disease is genetic so those two things also raise suspicions.

I am starting to piece together a puzzle and I believe I may be getting close to the answer.

I have never had problems with wheat until recently I used to eat nothing but wheat bread, my question is could this be celiac disease?

Thanks in advance for your responses :)


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ravenwoodglass Mentor

Yes it certainly could be. What you did was a gluten challenge. You dropped gluten and felt better then ate gluten and saw your symptoms return. You do need to be on a full gluten diet for testing. So if you want a doctor to confirm what your body has already told you get back on gluten. You should also encourage your family members to get tested. The rash sounds much like DH, or the skin form of celiac. A biopsy can be done if you have an active lesion but it needs to be done by a derm who knows how to do when looking for DH. The biopsy needs to be taken from the area next to the rash not the rash itself. A diagnosis of DH is a diagnosis of celiac even if no other symptoms are present. You would not have to go back on gluten long term for testing for DH, only long enough to produce active lesions. Also if your Dad or another family member have an active rash let them know about DH and testing. Celiac is very strongly genetic and with your response to the diet it is likely that it is their issue also.

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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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