Celiac Testing

[breadguebad]

       Hello all its very nice to be a new member to the form. I’m excited to see your feedback since most of you are experienced with this disease. I wanted to seek your advice and views. I wanted to ask because two years ago I was tested for celiac and the transglutaminase, IgA test came back a moderate positive. The doctor told me to dismiss it because my Gliadin Igg & Iga came back negative. The only problem was two months before I saw him I cut back on gluten because all of the abdominal discomfort pain, and a lot of other symptoms.  Told me to go see an allergist because it was probably a food allergy, so I went and only Wheat came back on the skin prick test, but the allergist said he wasn’t sure because my skin was so reactive.

       The last doctor I saw said that the transglutaminase IGA is a very accurate test and that all my symptoms match celiac disease: stomach pains, constipation & diaherra, fatigue, joint pain/stiffness, muscle aches cramps & spasms, tingling in my feet and hands, dental eroding (lost two teeth), blisters inside my mouth, dry skin, weight loss (168- now 149),  vit D deficiency in the past, and acne. Was a young active exercise guy never had any problems then all these issues began.

      Now my doc has me eating a gluten diet so I can be retested when I see the Gi. The only problem was that these last two weeks were hell bathroom wise, and now I don’t get as sick when I eat gluten but my other symptoms have got worst such as mood (depression/anxiety) and joint pain. He says I need to be retested because the last three years I have been off gluten but cheating here and there because I was told to not to worry about celiac, but I was off enough to throw off my testing.

     My question is, is it worth it to keep eating gluten to get tested again, or do I need to ignore the first doc and accept that I’m a celiac since of the transglutaminase IGA test? I mean I have been tested for every other imaginable disease or condition in the world, and all the doctors thought was that I’m crazy. 

[nvsmom]

Welcome to the board.  

 

Your first doctor, in my opinion, gave you some bad information. The tTG IgA is a pretty specific test for celiac disease; I believe about 95% of all positive tests are caused by celiac disease with the other 5% of Borderline) positive tests being caused by diseases such as diabetes, colitis and crohns, liver disease, and thyroiditis.

 

The gliadin tests, and I'm assuming it is the anti-gliadin antibodies test (AGA IgA and AGA IgG), are older and less reliable tests that test for a sensitivity to gliadin...It's sensitivity is pretty low though so the test is not used frequently any more.

 

Personally, I would advise you to accept the first moderately positive tTG IgA test, along with all of your symptoms, is pointing to a celiac diagnosis. It seems that sometimes when people have been off gluten for a long time, they need to eat gluten for two or three months in order to raise their antibody levels high enough to show up in blood work. The usual advice is to consume gluten for 6 weeks but some doctors advise 8-12 weeks is better. That's a really long time to feel badly.    An endoscopic biopsy usually requires just two to four weeks of gluten to be fairly sure of an accurate test. Could that be an option?

 

Were you feeling better gluten-free? I hope you are planning on resuming the gluten-free diet regardless of the latest test results.

 

Have you been tested for thyroid problems? Some of your symtoms could fit thyroiditis too.  Also, you might want to check your other nutrient levels too.  Celiacs are often low in magnesium, calcium, iron, ferritin, B12, K, A, zinc and.... I'm forgetting something. LOL

 

Good luck with whatever you decide to do.

[breadguebad]

Thanks for your insight it has been helpful.  I have read that  tTg IgA is the most specific test for celiac. As for the anti-gliadin antibodies tests I have came back with moderate levels on the last two tests but I haven’t been eaten a lot of wheat when I was tested so they were not high enough. Since I have had a positive result tTg IgA result and its 95% correct, and I have been pretty sick this last week eaten gluten especially gooey gluten foods (muffin, doughy cookie: just one, white bread) it seems like I have my answer.  

I have had vitamin deficiencies  in the past from vit D, and magnesium. I also have low calcium, and potassium but both were just in the range so they were not negative. I have heard that everybody is different in vitamin levels anyways I guess? Although, usually my levels come back normal but are always in the low range.

As for the thyroid I have been tested a quite a bit over the past three years, because since I was told I was not a celiac it was thought to be my thyroid, but I have always had levels that were in range. Now one doctor told me that testing wasn’t always accurate and started me on thyroid replacement, which made me hyperthyroid. The last time my levels were checked I had a .9 tsh and low t4, ft4. So my doctor who believes I’m a celiac had my pituitary gland scan, but came back normal so he sent me to a specialist at the Mayo Clinic. The endocrinologist there said that my off levels were off due to the fact that my thyroid was trying to make up for another issue such as my weight loss. He tested my thyroid again and it was within the normal levels. 

I have felt better when I have gone gluten free such as less joint pain, fatigue, mood, and muscle twitches. The digestive problems go away completely unless I eat gluten, contaminate food, or very greasy food. I have never gone to long without eating gluten or contaminate food since I was told I was fine.

 I feel people, and even some medical sites seem to downplay all the affects gluten can have on your body, and they make recovery seem like such an easy and speedy process for celiacs. Will probably go see the GI whenever they schedule me, but since the tTg IgA is positive I may just start trying to get healthy now. Therefore I plan on going gluten free and hoping all my symptoms subside.

thanks for reading and taking the time

[kareng]

From what I have gathered from some Celiac doctors - if its a mild positive, you would really want a good endoscopic biopsy (at least 4-6 samples) in the small intestine.  If you want that to be positive, you should continue to eat gluten until the procedure is finished.

[breadguebad]

 Yes, I believe that is what my current doctor is doing, but I have to wait another week to see him. Hopefully it will go by fast because eating gluten all the time is making me feel pretty crappy. I have read on here that some doctors, and this includes mine feel that since the transglutaminase IGA is such an accurate test that most times some doctors do not even feel the need for an endoscopic biopsy procedure.  
  I think he is going to schedule me for the procedure anyways even though he feels that my moderate positive is accurate due to the lack of results from the other conditions that can cause a positive test, plus all of my common symptoms that point to celiac.