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Crohn's + Possible Coeliac

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*jumps in at the deep end*. I got diagnosed with Crohn's about six years ago now. A few months ago, I moved house with my family. When I went to see my new GP for the first time, he suggested the possibility of Coeliac Disease. He took a blood test and phoned up the next day, saying that I had high levels of IgA antibodies and that in his opinion it was a strong likelihood I had positive Coeliac Disease. (I don't remember it word for word, but you get the idea.)

This was a few weeks ago. I didn't act on it straight away for various reasons. For one thing, I had quite a few appointments at the hospital to get out of the way. One was for a colonoscopy, which showed I had severe inflammation of the colon and terminal ileum, for which I was prescribed a course of steroids. Another was for an iron transfusion which utterly failed (I went into a severe allergic reaction and lost consciousness) - I've since been put a 5ml daily dose of Sytron (syrupy iron supplement), since I couldn't tolerate Sytron at a higher dose than that in the past. When I went back to the hospital a couple of weeks after the colonscopy to talk to the Crohn's nurse/gastroenterologist, I told them that my new GP had diagnosed me as having Coeliac Disease. They seemed a bit put out by this, and said that their tests of a few months back had showed me negative for celiac disease. They also said that the hospital that I had been with before them (I changed hospitals about 2 years ago) had showed me negative for celiac disease as well.

I'll be going back to the hospital in a week's time thereabouts. I've got a copy of the GP's blood test results to show them, but they look a bit incomplete to me. At any rate, here's a couple which I think are relevant to Coeliac disease:

IgA = 4.06 g/L High (doctor's name)

Serum tissue transglutaminase level = (nothing; this is just blank)

At any rate, to finally cut a long story short...

Last Monday, upon my GP's recommendation, I finally started on a gluten-free diet. It's been six days now and I don't feel slightly better in any way: I still have the same diarrhoea, fatigue, sense of malaise, etc. What worries me the most, though, is that my GP basically poo-pooed the idea of having an endoscopy to confirm/discount celiac disease once and for all. Doubtfully, I decided to try the gluten-free diet anyway, but it's just been more difficult than I anticipated. My dad thinks I should stick to it. But I'm really getting very unhappy about sticking to a diet for a condition that I'm not even remotely sure I have.

I'm sorry for the long post. I really would appreciate any feedback. Thanks.

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First just because you had negative results a while ago does not mean it could not have flared up since, or and this IMHO is more likely, you may be someone who does not show up positive on tests. That was me. The pain I endured for years with the nightly 2 to 3 hour violent, make you sweat and feel faint D every single night no matter what med I was on make me not really like life at all. I was close to death and had a lot of systems effected before a savvy doctor had me do an elimination diet and my celiac was finally found. You haven't been gluten free for very long and with the damage that it sounds like you have it can take quite a while to heal. You should also if you haven't already cut out all dairy for a month or two. After you are feeling better you can add it back in and see if you can tolerate it. Gluten free living is a bit to get used to at first but one you start feeling better it is so worth the trouble. Welcome to the boards, read as much as you can and ask any questions you need to. I hope your on the right track, much as I wouldn't wish celaic on anyone when we are in so much pain and that can be stopped with a diet change and not surgery or heavy meds it seems miraculous.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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IMO your celiac is what caused the crohn's. Your chrons should heal once you are gluten free for some time. You should also go dairy free & probably just go grain free. Stick with the diet.

I have a friend that I have posted on here before that thought she had crohns. She is a vet & worked for a vet that has celiac & his daughter & his receptionist... ,for many years & actually went into the gluten free bakery business on the side. (she learned from baking the office gluten free cakes) She sold her cakes thru our support group, so it was not like she did not know about celiac...

I talked her into getting tested at Enterolab & wow, she was positive for a gluten problem, dairy problem, & has a DQ8 & a DQ2. She has thanked me more than once. She said that on day 4 of the diet she got better... & now she does not have crohn's at all... She was really mad to, at the doctors that mis diagnosed her for years...

She always seemed so sad, but now she is all happy & smiling & energetic!!!!

Stay on the diet, research everything that you can, go to the extreme of just eating basic plain foods with no grains to get yourself out of this crohns problem, then when you feel better you can add in things to get a more normal diet.

I am so glad you are on this forum & wish you all the best. Let us know if you have any questions, we will help you though it - day by day if you need us...

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