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Am I Celiac


Richie1

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Richie1 Rookie

Hi I am new to this forum but have suspected I may be celiac for some time,

My symptoms come and go and always have a build up to them which starts with acid reflux then a grumbling stomach which then turns to stomach pain (sometimes very severe).

Sometimes when I eat I get an overwhelming urge to vomit this nausea comes out of nowhere and this then sees me sick for at least a week during which the all i seem to eat is chicken , vegetables and fruit,.

I know that bread , pastries chocolate and a lot of strong flavoured crisps seem to start my symptoms so at the moment have no idea what i can and can't eat.

I also sometimes wake up in the morning really off balance as though drunk is this anything to do with celiacs.

Hope to hear from someone soon its driving me crazy.

Thanks

Rich


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Roda Rising Star

You may want to consider testing while you are still consuming gluten. Blood tests include: total IgA, IgA/IgG tTG(tissue transglutiminase) and IgA/IgG DGP(deamidated gliadin peptide). There is about 20-30% false negative rate on these. Some people never test positive on blood work. You also could consider an upper scope(EGD) with biopsy. They need to take a minimum of 8 samples in the first part of the small intestine(duodenum) all from different spots. Biopsy could be false negative also due to not enough samples taken, samples not taken from damaged areas(unable to tell villi damage with naked eye), minimal vill damage done yet and inexperienced gi/pathologist. Despite the pitfalls, it still would be a good idea to get tested before going gluten free, otherwise the testing may be invalid by being gluten free. At that point you would have to do a gluten challange for appx. 3 months with about 3-4 slices of bread or equivalent a day. You still could have a problem with gluten even if all your tests are negative for celiac. My oldest boy has been blood screened 4 times and is always negative. He had a negative scope/biopsy. He is doing a gluten free trial now and is doing great. I've noticed improvements in him. He is not celiac but considered gluten intolerent. His brother and I are diagnosed as celiac.

saintmaybe Collaborator

Hi I am new to this forum but have suspected I may be celiac for some time,

My symptoms come and go and always have a build up to them which starts with acid reflux then a grumbling stomach which then turns to stomach pain (sometimes very severe).

Sometimes when I eat I get an overwhelming urge to vomit this nausea comes out of nowhere and this then sees me sick for at least a week during which the all i seem to eat is chicken , vegetables and fruit,.

I know that bread , pastries chocolate and a lot of strong flavoured crisps seem to start my symptoms so at the moment have no idea what i can and can't eat.

I also sometimes wake up in the morning really off balance as though drunk is this anything to do with celiacs.

Hope to hear from someone soon its driving me crazy.

Thanks

Rich

It certainly sounds as though you could have celiac, although you could have something else or in addition to celiac. My first suggestion would be to make an appointment with your GP and hopefully have them draw bloods, since it doesn't sound like you've gone gluten free yet. This is the best time to do testing. If you self-start on gluten free and want testing done later for celiac for any reason, you'll have to start eating gluten again.

If you come back positive for the blood test, they'll refer you to a GI specialist who will perform an endoscopy. They'll stick a tube and camera down your throat and take samples of your intestine to see what, if any, damage has been caused to the villi. Your biopsy samples will be sent off to a pathologist who will read your results. This is the "gold standard" diagnosis.

I, like many other people on the board, am self-diagnosed, but am in the process of confirmation through private testing, which is another route you may choose to take. There are labs that will do fecal tests, genetic tests, or both, and there are pluses and minuses to each type of test. I self-diagnosed because I was really ill, all the symptoms you had for years, and more besides, and quit eating wheat. I responded positively to a gluten free diet, which can be fairly diagnostic in conjunction with other diagnostic criteria.

Good luck!

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    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
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    • Scott Adams
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