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Are These Symptoms Gluten Related?


alihawk

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alihawk Rookie

Hello everyone I have had the following symptoms on and off for a while, fatigue, headaches, blisters on side of tongue, cysts on ovaries, thyroid nodules, stiff or achy joints, constipation, bloating, peeling skin on toes.

the only constants are bloat and constipation. The others come and go never constant or permanent.

Many years ago, appox 10-15, I was tested for celiac and the only positive result was the IgG gliadin AB. All others were negative including biopsy. I was initaiily told I had celiac and get a biopsy when that was negative I was told nope I am not celiac. I had 8 years of severe constipation that's resulted in mega colon and colonic inertia. Essentially my colon was twice the diameter and the contraction of the peristalsis was ineffective I would go to the bathroom every 20 days give or take.

I don't believe that they even offer the IgG gliadin AB blood test anymore cause all the labs I have had for celiac do not include this test as it resulted in many false positives from what I read.

Any thoughts on the symptoms and the lab work is appreciated.

Thanks for reading and your input.

Alison


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nvsmom Community Regular

There is a good chance that you have celiac disease and the doctors did not realize that the biopsy can miss as many as 20% of all celiacs, especially if it was not well done.  Your symptoms could be celiac disease so if you are eating gluten, you may as well get tested... with the newer tests.  ;)

 

These are the tests:

  • ttG IgA and tTG IgG (tissue transglutaminase) - most common test
  • DGP IgA and DGP IgG (deaminated gliadin peptides) - newest tests
  • EMA IgA (endomysial antibodies) - similar to the tTG but tends to detect more advanced disease
  • total serum IgA _ a control test
  • AGA IgA and AGA IgG (anti gliadin antibodies) - older test that is not very sensitive, replaced by the DGP tests

 

The AGA IgG has a specificity to celiac disease of 80-95% according to this report (pg 12): Open Original Shared Link That means a positive means celiac disease 80-95% of the time.  I'm disappointed that your doctor did not suggest at least trying the gluten-free  for 6 months when this positive test popped up.  :(

 

Your symptoms also sound like hypothyroidism, at least they sound like my symptoms.  ;)  You might want to get that rechecked while you are at it.  I find these tests will tell you the most:

  • TSH -should be close to a 1 regardless of the lab's normal range
  • Free T3 and Free T4 - should be in the 50-75% range of your lab's normal reference range
  • TPO Ab - should be pretty low.

Avoid the T4, T3, or total T4 and total T3; those tests won't give you as clear a picture as the free T's will.

 

If your doctor won't test you, find a doctor that will. If you are unable to get tested, consider trying the gluten-free diet for 6 months or so.  Give it a long trial as symptoms of celiac disease can take months or years to improve.  Do NOT go gluten-free before testing is done though because that can, and eventually will, lead to false negative celiac disease tests.

 

Best wishes.

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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.
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      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 so without formal testing for celiac disease it can be very difficult to distinguish between the two in the early stages if it is celiac disease. 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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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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