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Latent/Early Celiac?


Mike1991

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Mike1991 Newbie

Two years ago I suffered from a bout of diarrhea and abdominal pain for 7 days.  During this time period I ate HEAVY amounts of gluten.  Sometimes two sandwiches w/ wheat bread 2 times a day, pasta for dinner, and honey wheat smacks at night.  I went to doctor and eventually GI.  The tests they ran came in as follows:

Total IGA - Normal

EMA IGA - Negative

tTG IGA - Negative

Gliadin DP IgA - Negative

Gliadin DP IgG - POSITIVE; Score of 43 U/mL

Gene Test:  LOW RISK DQ2.2 Heterozygous

By the time I saw the GI my symptoms had subsided.  He told me not to worry and that Celiac is highly unlikely.  Said biopsy wasn't necessary given my genetic markers and lack of symptoms.  I wasn't convinced so I monitored my body closely.  As 2015 went on symptoms would reoccur but were mild.  I'd have abdominal pain and lose stools for one day.  Eventually these attacks disappeared even though I continued eating gluten.  In 2016 I had my next physical.  No flags and no signs of malabsorbtion.  Numbers were literally perfect.

If I have Celiac, symptoms are EXTREMELY MILD.  At least two times a month I get a minor headache.  I had a few canker sores last summer.  Sometimes I have minor bloating.  Had a loose stool last month.  But overall, I am very healthy.  I run 2-3 miles a day, have a very physically intensive job, and feel great.  So obviously I'm getting some mixed signals here.  These symptoms appear in healthy people as well!  Also there is no consistency in symptoms!  I can still eat a big mac and feel fine!

I am in the process of getting 2nd opinion.  On one hand I fear that I'm in the early stages of Celiac.  But at the same time I don't want to follow a highly restrictive diet unless its necessary.  On the other hand, I've read studies how high gluten intake can lead to something called leaky gut (even in healthy people).  So it is possible I inflamed my gut temporarily and then healed after a few months.  Either way I need an answer.  Even though I feel good now I don't want to wake up with cancer in ten years!  

What is your assessment of my situation?  Also, do some of you also have VERY MILD symptoms?  What did your labs look like and did you have any signs of malabsorbtion?  Finally, do any of you have this low risk 2.2 Heterozygous gene?

Like I said I'm getting another opinion shortly.  But I'd like some peace of mind either way.    


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TexasJen Collaborator

My understanding is that Gliadin antibodies can have  false positives and a false negatives. They can occasionally be high in normal people and they can also be high in other GI diseases like Crohn's - so that probably doesn't help you at all!  Maybe your second opinion doctor would run a full celiac panel again (as opposed to just 1-2 of the tests). As long as you are eating the equivalent of a piece of bread per day that should be adequate. But up to 10% of celiac patient can have negative antibodies. SO, if you are having GI symptoms/worries, it might be worth the endoscopy anyway. 

As for symptoms, I had no GI symptoms (50% of people don't). The weekend if found out I had celiac I went out and had a burger and a huge piece of cake as a farewell to wheat - and felt GREAT! My only symptom was anemia. My antibodies were all above the threshold of the assays (>100 for anti-TTG, endomysial Ab etc) and my biopsy was Marsh Stage 4 (the worst). So my case wasn't mild and had been going on for years more than likely. So, you can clearly have celiac and not have GI symptoms.......

Good luck! Let us know what your second opinion doc says...

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