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dawnsusan

Collagenous Colitis With Celiac?

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I have been undiagnosed for a few years. Two years ago, I stopped gluten with my son, who has autism, and daughter who has ezcema, a terrible onset case of DH, and some possibly celiac genetics results. I have GI symptoms, so it made sense to stop, oh, and and positive enterolab results.

Any blood work I did was negative, as we ( my primary and I) didn't know I needed to be on gluten to get results. Duh.

I was happy to stop gluten and we are strict about it.

Anyway, for me, I am constantly thinking I got glutened, as my abdomen still hurts quite often.

I had a bout of abdominal pain that sent me to the ER two weeks ago -- it was so acute that they thought I ruptured an appendix. Normal CT scans, normal basic blood work.

I always have cycles of what feels like intestinal inflammation, then goes away. It hurts to go to the bathroom, and even press on the abdomen or jump or run. Thought it was "just" gluten intolerance.

Went to a GI doc who knows his stuff and took me very seriously. We are doing a gluten challenge and scoping in about six more weeks. He is looking for collagenous colitis, and suspects celiac. He did say that there are a lot of false negatives, but he wants to see what we can come up with and thinks it will be worth it to challenge gluten snd scope. He also said it could be endomitriosis, which is the next road we may travel down if this is all neg.

Here are my questions: Can you have colitis with swings of constipation and diarrhea? I always thought it always showed itself with loose stool.

I think I was glutened a few times over the previous few months (dinner at a well-meaning friend's house -- they tried to do all gluten-free, but forgot about a few things, after swearing it was gluten-free) -- could that cause a flare up of CC?

Could straight celiac cause that much pain?

I totally took Advil, by the way, the week before.

Also, I know this sounds macabre, but I want one scoping. Not three. If there is an answer to be had, I want it as soon as possible. Can I do something to make sure it is seen when I am scoped? Eat TONS of gluten and take advil?

I am so tired of hurting and not having answers. My stomach and bowels have hurt on and off since I was about 11. I'm 40 now. I thought going gluten free would make everything better.

AT least I'm finally being seen by someone who doesn't dismiss me with an IBS diagnosis and a script for an anti-anxiety med.

Thanks!

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Dr. Fine of enterolab had researched microscopic colitis and found a gluten connection. It is because of this he invented the Enterolab test. I think you can find some articles about this on the Enterolab website.

Answer: Yes there can be a connection between colitis and gluten.

And, it is common to get glutened at friends and families houses.

Cutting board, pans, fingers, plastic bags where they had bread in previously, rag used to wipe gluten before, anyuthing. I get sick from baking with gluten so I gave that up, and your firends probably have gluten dust in the kitchen. I get sick if I have to clean a room with gluten dust or bread crumbs. I heard of someone whose daughter got sick from working with the flour bags in a food store. Celiacs also get sick from working in a bakery or kitchen with gluten.

One can get glutened from sitting in a couch where they have eaten gluten cookies. Or at a desk ins school where someone has eaten oatmeal cookies.

People migh also accidentally use gluten ingredients because they do not think about what contains gluten.

Hubby's mother used bread crumbs and honey to dress a pork steak, for example. Probably did not dawn on her that bread crumbs had gluten.

Your kids must have gotten the gene from someone. DH is as good as a celiac diagnosis.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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