Celiac + CC

[audreybutler]

Hi folks,

Firstly, let me say what a lovely and supportive community this is! Hoping someone here might be able to give me some advice....

This past August I was diagnosed with both celiac (biopsy confirmed) and collagenous colitis. I have been strictly gluten-free since March (when I got my initial bloodwork back indicating celiac) - even though I had already been off gluten for 6 months by the time I did the biopsy, my biopsy indicated mild villous atrophy meaning that I am not fully healed yet (or am being cross-contaminated, which seems unlikely given how strict I am. Have worked with a dietician to make sure I am 100% GF).

Since I went fully, scrupulously GF in March, things have gotten a lot better symptom-wise. The dreaded D went from 5-10x per day to 2x per day. I just ordered the Enterolab tests so will be narrowing down food intolerances shortly. I should mention that I am gluten, dairy, soy, and egg-free already. I also avoid raw veg, anything high fiber that is irritating to the lining of my gut. I'm not sure if there is a histamine issue at play, my chronic eczema has healed since going GF, though my skin is still fairly dry.

What I'm wondering is - can I expect continued improvement in my MC as my gut continues to heal? Given that it can take some celiacs up to 2 years or longer to fully heal their small intestine from the ravages of gluten, I would imagine that at only 9 months GF I still have a ways to go healing-wise.

My GI says it's a chicken-or-the-egg situation, that my MC might get better as I heal from celiac. I have certainly seen some improvement, it is evident that inflammation in my gut has reduced a lot, but I am still far from normal in the BM department and am so sick of it.

Would love to hear from anyone who has been in a similar boat.

Thanks in advance for your help!

- Audrey

[tex]

Hello Audrey,

Welcome to the group. Although I was mostly in remission after about 1 1/2 years, it took me over two years to completely heal. My doctors didn't bother to check me for celiac disease, but I had all the symptoms, and I do have a DQ2 celiac gene. Treating MC by diet changes also resolves celiac disease symptoms, so getting a diagnosis of celiac seems sort of irrelevant for anyone who has MC. And you're correct about the long healing times for gluten damage. I've seen published research that shows that kids can heal in less than a year, but it takes older adults from 2 to 5 years for their intestinal damage to completely heal.

Having said that, you should be seeing significant improvement by now, and if the diarrhea doesn't completely resolve sometime soon, you might need to consider other possibilities that might be causing the inflammation to continue, such as taking certain medications, or HRT. The EnteroLab results should tell you whether you're having any cross-contamination problems, or if some other food may be causing inflammation. I probably wouldn't make any changes until I had those results at hand. Please don't be concerned if the results show that your anti-gluten (anti-gliadin) antibody levels are still not down to normal levels, because it can take years for anti-gliadin antibody levels years to decay, especially if they're relatively high when a patient begins the gluten-free diet In fact, the EnteroLab tests can detect gluten sensitivity antibodies up to two years after most people adopt the gluten-free diet.

All in all, though, you appear to be doing everything right, and you're well on your way to remission. Once you get the EnyeroLab results, you should be able to make the final touches to your diet.

Again, welcome aboard, and please feel free to ask anything.

Tex

[audreybutler]

Thanks for your thoughtful reply Tex.

I'm only 32 and otherwise in good shape physically so hopefully I won't be one of the unlucky ones who take 5 years to heal.

I'm awaiting your book but Amazon shipping is taking an eternity. I have some questions about the relationship between MC and mast cell stuff, so I'm sure it will help me understand that better.

Thanks again!

[tex]

Yes, you should be able to heal much faster than most of us. If you ordered the book from Amazon, you should be able to download a free digital copy that you can start reading immediately, unless they've discontinued that option. Or if your digital device is something other than a Kindle, and it uses a different format for digital books or if you want to read it on a computer, or your cell phone, I can send you a copy attached to an email in whatever format you want, that is, EPUB, PDF, etc. I only need to know which format, or formats, you want. Kindle originally used MOBI format. I'm not sure what they use now.

Tex