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Celiac Suspected But Not Proven

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Hi all,

I am new on this forum. I have been reading quite a bit, but since each case is unique I have decided to start my own topic.

I hope to get some good advises on what I should do next in order to determine if I have Celiac disease, or some idea of what else (if not Celiac) I could have.

My medical history goes as follows:

1. 2006: severe ulcer in my month for which the cause was not found. Ulcers ultimately disappear and came back every six month or so during times of high stress

2. Dec 2008: my sexual performance was not very good so I went to see the doctor. A blood test revealed:

- Red blood cell 3.4

- Haemoglobin 12.6

- Haematocrit (PCV) 36.5

- Mean cell volume 108.1

- Mean cell Hb 37.3

- RDW (Red cell distribution width) 20.5

=> Anemia

As well as B12 deficiency and Iron deficiency (can't find the number right now)

3. I go convinced that I had pernicious anemia until a doctor told me that it was most likely celiac disease. I started taking Iron and B12 vitamins. The new blood test (Feb 2010):

- Gastric Parietal cell antibody : positive

- Intrinsic factor antibody: negative

- B12 : 155 pmol/l slightly too low

- Iron 7.6 umol/l too low but serum ferritin indicates adequate iron stores

- Tissue transglutaminasse IgG <20 U/mL (normal)

- Tissue transglutaminasse IgG 36 U/mL (moderate, i.e. positively too high)

- Endomyseal antibody : negative

The doctor said that the results were mixed and that I should do a biopsy.

4. I went on gluten free diet (I was in Australia, so very easy as all food is labeled) and continued to take the vitamins. By April 2009 I felt like a new men (i.e. great, much stronger). I though that the diet was responsible but it might well only have been due to the vitamins.

5. Before the biopsy, the doctor asked me to eat wheat normally for 1 month and then I did the biopsy in May 2009

- Duodenal biopsies: Within normal limits (which means everything normal I think)

- Gastric biopsies: Moderate Chronic Gastritis with Intestinal Metaplasia, but no activity or helicobacter pylori was seen. There was no dysplasia or malignancy seen either.

- Iron and B12 at that time were good (I had been taking vitamins for 4 month)

The doctor said that the test were no concluant and that I should eat more wheat (or for a longer period) and redo a biopsy. This is an advise that I did not follow.

6. October 2010: DNA test

- I am positive on both DQ2 and DQ8

7 For the next year and a half, I did what I though was gluten free diet and stopped taking the vitamins. I wanted to see whether I was doing great without the vitamins also.

During that 1.5 year, I stopped the diet and ate wheat for 3 month, which did not make me feel very bad directly, but maybe a little after the 3 month (i am not sure).

8. In February 2011 I did a new blood test to see how it was progressing:

- Iron was fine

- B12 was 65 pmol/L !!!! That is a third of the minimum required. I can feel it in day to day life (no joke).

9. Then I realized that my diet had not been strict enough. I live in Singapore and a lot of products don't have proper ingredient list. All restaurant put soy sauce in everything. Then I decided to do a much stricter diet. It has been 3 weeks now at I am fairly confident that I have not had wheat.

However, the gastritis is still there (I can feel it) and my b12 is still very low.

A. How long does the gastritis takes to disappear once on a gluten free diet?

B. I am starting to doubt highly that I have celiac disease. Any idea of what else I could have?

PS: the reason why I refuse to take vitamins nowadays is because if I do, I can't see that I am sick anymore.

PS2: if I suddenly each an entire bread today, I doubt I will be sick tomorrow. I tried before.

All help much appreciated....

Best,

Serge

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You did have a positive blood test, that is significant as false negatives are common but not false positives. It would have been best for you not to have gone gluten free until after your biopsy was done as a month back on gluten may not have been long enough. Sometimes the proof is in our response to gluten and for you it appears that it has nasty effects on at least your B12 levels and the gastrititis and possibly in other areas that you are not realizing. Do go back to taking the sublingual B12, that will not effect any celiac testing. If you really feel you need to have a definate diagnosis then go back to eating lots of gluten for 3 months and then get retested being aware that you could still have a false negative.

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I agree with what ravenwoodglass said. Many don't have very noticeable symptoms. I didn't for the most part, and it wasn't until the symptoms I had got really bad, that it seemed possibly related to wheat/gluten. But by far, most of the symptoms I experienced were very unusual, even for Celiac. I did not seek an "official" diagnosis. Going on a gluten-free diet revealed the answer I needed, though it took six months before I noticed much of any change at all.

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