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Still Trying To Get Diagnosed!

SPinch03

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SPinch03 Apprentice
SPinch03
Posted

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
cyclinglady
Posted

Keep us posted and I hope you find your answers!

SPinch03 Apprentice
SPinch03
Posted
  • Author

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
SPinch03
Posted
  • Author

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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      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
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      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
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      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
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