Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Are These Symptoms Gluten Related?


alihawk

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,877
    • Most Online (within 30 mins)
      7,748

    Ruth Margaret
    Newest Member
    Ruth Margaret
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.