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Your opinion on my symptoms and negative gliadin antibody test?

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SpaceInvader
SpaceInvader

Hi Everyone,

I'm hoping for opinions on my situation from some of you with coeliac disease. What do you think my likelihood of having it might be in light of my recent history, symptoms and risk factors, but given a negative gliadin antibody test I've received.

I have two family members who are coeliacs, both diagnosed by intestinal biopsy. My grandmother was diagnosed in the 70's and my mother was diagnosed in the 80's when she was 21. I'm 25 at the moment.

Symptoms-wise my issues began three months ago while on a holiday in Taiwan. While there, as a "safety food," i was eating a lot of breads/bread rolls and began to get quite bad inflammation pains in my back each time i did, followed by intestinal discomfort. I returned from Taiwan and over the next two months began to notice my stools become very large, lightly coloured, oily looking and floating/difficult to flush. General feelings of malaise, fatigue, headaches and severe brain fog crept up. I became severely exhausted all the time, although could never sleep. When i did manage to it was never refreshing.

At the two month mark this turned rapidly downhill following an acute non-infectious gastroenteritis. My intestines from beginning to end became and persisted in an inflamed state for two weeks, with the most severe inflammation burns focused in my lower right abdomen near my appendix. Stools persisted in the same way as previous, but i began to notice additionally i was starting to see quite a lot of completely undigested food come back out each time also. Food was coming back out in a semi-wholesome state. Inflammation followed a pattern of being less severe in the morning, and becoming very severe during the day after beginning to eat breakfast (bread rolls / sandwiches of some sort). On a couple of occasions i thought it was appendicitis.

After noticing this pattern and realising what might be happening I cut gluten out of my diet. Inflammation pain subsided completely over 2-3 days, and general energy levels improved over the next two weeks. Undigested food stopped coming out, and stools darkened and became more normal looking again.

After two weeks off gluten I decided i'd have one day where I'd eat nothing but a slice of bread. I ate this in the afternoon feeling fine, and by the evening bad migraineheadaches/malaise/brain fog had returned.

I visited the doctor the next day, had a gliadin antibody test done, and have found out now that the results were negative. I understand i am meant to be on gluten persistently for six weeks prior to this test, but that i wasn't for the preceding two weeks. Going back on gluten isn't an option for me if I'm possibly going to begin feeling like that again though. I've already missed a month of work over this now.

My question really is given all of this above, what do you think is the likelihood that I have coeliac disease also? Any recommendations?

Thanks for reading

1 like, 3 replies

3 Replies

  • SpaceInvader
    SpaceInvader

    Posted

    Edit:

    By the way full blood count showed no abnormalities except slightly low platelet counts at 125,000 first time and 142,000 on retest. Vitamin D was normal

  • FA54321
    FA54321 SpaceInvader

    Posted

    It is possible that you have coeliac disease, but the only way to really find out is to eat gluten for at least 6 weeks and have a biopsy (via endoscopy). It is much more reliable than a blood test. Since you don't want to go down that route, you will always be left wondering if you have it or not.  It's really your call, what you want to do.

    If you prefer not to eat gluten for six weeks to find out, you could just stop eating all gluten (make sure you are 100% certain that you are not allowing it to sneak into your diet) if your symptoms dissapear, there's a high probability that it's coeliac disease. Be aware though, that it can take months or in some cases years, before the gut heals, and you may actually have 'withdrawal symptoms' for a while, before you truly start to feel better. (This happened with me, and for about six weeks had vomiting attacks at least once a week until I started the road to recovery, and it was even longer than that before I could even tolerate gluten/wheat free bread), so bear this in mind.

    Good luck.

  • laurie99463
    laurie99463 SpaceInvader

    Posted

    You certainly may.  The screening tests that will help are as follows: 1. For ACTIVE CELIAC DISEASE, Transglutaminase IgA antibody (ttg IgA) or Endomysial IgA (EMA IgA). These are two antibody tests. I do not recommend the Anti-Gliadin test for screening. These two give you a start. You still require a small intestinal biopsy. 2. Check a total serum IgA level. This test is used to determing if you have Selective IgA deficiency. This occurs in 2% of Celiacs. Finally, HLA DQ Gene Testing. We know that one gene, the HLA DQ gene, is definitively associated with Celiac. A form of this gene, called HLA-DQ2 allele, is found in approximately 95% of the Celiac patience. Of the remaining 5% HLA-DQ8 allele is found. Keep in mind, 40% of the general population has one of these two genes.  HOWEVER it can be helpful diagnosing if someone does not have Celiac Sprue. DQ2 or DQ-8 positive individuals and their relatives should be screened for Celiac Sprue every 2 - 3 years.
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