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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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