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Still Trying To Get Diagnosed!


SPinch03

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SPinch03 Apprentice

Hello everyone!  I'm back after a year of still no answers.  Finally seeing a new group of doctors since I recently got a new job.  My new primary doctor thinks I may have celiac and wants me to get another opinion.  Going to see the new gastroenterologist next week and I can't wait to go.  I'm hoping to finally get some answers to the issues I've been having.  Although it will be a huge lifestyle change I think I will be relieved to know that everything I'm feeling just isn't in my head.  Doctors are so quick to tell me all of my symptoms are stress-related.  Here is a little background about me!  

 

May of last year I started realizing I was loosing my eyebrows (Still haven't grown back!!) - initially thought it was my thyroid, all levels were within range though.  I'm also not loosing them on the outer corner of my eye but more towards the inner corner (Doesn't really matter I'm sure).  Tested my Iron and my ferritin was down to an 8 when in previous years it was around 200 something.  No bleeding episodes and my menstrual cycles are light.  I started  researching hashimoto's and iron deficiency and started seeing stuff about celiac. 

 

In the lab I work in I was tested for tTg IgG/IgA, Gliadin IgG/IgA and Total IgA.  I was not deficient in IgA and I'm not sure if the testing for gliadin was deaminated or not (don't believe it was).  I don't have my exact results for the tTg IgG/IgA or Gliadin IgA but I remember they were within normal limits, but my Gliadin IgG was 3.59IV and a positive was anything greater than of equal to 1.1.  

 

I also had the genetic test done and I was negative for HLA-DQB1*02 and HLA-DQB1*03:02 but I was positive for HLA-DQA1*05.  I know this isn't diagnostic in itself for celiac disease. 

 

I had a endoscopy and the report read as follows: 

A. Duodenal mucosal biopsies with no significant microscopic abnormality.  No diagnostic histology features of celiac are appreciated

B.  Gastric antral and oxytocin mucosal biopsies showing chronic gastritis.  Reactive foveolar hyperplasia is present.  H. pylori is negative

 

The material present is partly tangentially sectioned.  The villous crypt ratio is about 3.5.  There are intraepithelial lymphocytes but they don't seem to be significantly increase in most of the villi.  There are inflammatory cells in the lamina propria including plasma cells and lymphocytes with an occasional germinal center. They are normal to slightly increased in number.  No histologically diagnostic features of celiac are appreciated.

 

Really hoping this new gastro will shed some light on all of my questions...  Trying to eat as much gluten as I can tolerate before going for testing. I previously did not experience any GI symptoms but now I have been experiencing stomach pain (not everytime I ingest gluten but occasionally) The pain comes in waves, the pain builds up then subsides..I'm okay for a little while and then it happens again.  Keep your fingers crossed for me!!

 

 


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cyclinglady Grand Master

Keep us posted and I hope you find your answers!

SPinch03 Apprentice

Went to the new Dr. he was very nice and understanding and did say that I am at very high risk for developing celiac.  Had repeat blood work done (Waiting on results..) and he already scheduled me for an upper GI.  which I will have on September 1st.  *fingers crossed* that I get answers!  

SPinch03 Apprentice

Okay... so here goes all the new lab results:

 

Gliadin (deamidated) IgG:  4   normal <20

Gliadin (deamidated) IgA: 9    normal <20

tTg IgG: 3  Normal <9

tTg IgA: 1 Normal <4

 

Previous blood work I only tested positive for:

Gliadin (AGA) IgG  3.59 IV positive >/=  1.1 IV

 

GI still wants to perform the endoscopy even with the negative serologies.  Still says there is a possibility for the biopsy to be positive.  I'm preparing myself for a negative result tho, which still leaves me with no answers and an appointment with a rheumatologist next month.  I'm guessing something else is cross reacting and giving a false positive for the AGA IgG?  Anyone ever see these serologies with a positive biopsy?

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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