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Still Symptoms: What Now?

TCW

By TCW
in Coping with Celiac Disease

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TCW Rookie
TCW
Posted

I am having a tough time. I was diagnosed with severe anemia in November, had a CT scan, colonoscopy and endoscopy which showed inflammation but everything else generally okay. My blood tests were negative for celiac, but the written report for the internal exam said I had inflammation that had been seen in celiac or Crohn's.

Stomach symptoms up until November had basically been frequent pain and soreness, terrible constipation, and (forever) GERD. The last months before the testing, I had begun having bouts of D. I went gluten-free in February, and shortly thereafter stopped with the constipation that I had had my whole adult life, and had a great deal less body pain, which had always been a problem. I was supposed to "challenge" with gluten but decided against it. Oh, I also get severe inflammation along the inside of my cheeks, near my teeth, and thought it might be allergies (because I have Oral Allergy Syndrome, but that usually affects my tongue instead).

Symptoms probably 40% better overall, but still having cramping, some diarrhea, "flares" when I can't seem to figure out what has triggered it. (Although I'm starting to see a potential problem with corn -- fresh and chips, not popcorn, oddly.)

Finally went through Enterolab. Malabsorbtion very high, positive for gluten AND casein, one celiac and one GI gene. Went off dairy about a month ago.

My symptoms are flaring up like crazy now and I can't figure out why. I'm very careful and though I eat out from time to time, I never cheat and always ask about ingredients. Oddly, before my current flair, which has been three days of cramping, stomach pain and urgent need to BM as soon as I put a bite in my mouth, I've also had knee pain.

Any thoughts about what to do next? Should I eliminate corn? I'm still eating baked goods (like gluten-free breads) that have milk in them. Is that forbidden?

Also, before when I had a bad flair up like this, I'd mix up some instant breakfast when I was hungy and it was very soothing and satisfying. Does anyone have a suitable, non-daily, gluten-free replacement option? I sometimes feel like my intestines are swollen during an episode of what may be being "glutened" and miss that instant breakfast option.

I went back to my GP a month or so ago, and he pretty much blew me off. Last time I checked in with my GI guy, he didn't seem concerned, but now I'm not sure what to do. I'm thinking it's probably inflammation that rears its ugly head sometimes, though I don't know how to control it. I need to stop aggravating it so it will heal, but I don't know how to do that.

Thoughts? I'm sorry the post is so long.. I greatly appreciate your advice.

Many thanks.

BTW I will try to reply, but couldn't figure out how to last time! :)

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RiceGuy Collaborator
RiceGuy
Posted

It may be that you've become more sensitive, as many of us have after going gluten-free. Dairy in baked goods is a no-no if you cannot have dairy. Besides eliminating corn, I'd also suggest avoiding soy, nuts, and nightshades too. I am wondering if something you eat might be getting CC. Check labels to see statements regarding shared equipment and such. It may be that one or more items in your diet currently has CC issues. If you are eating any prepackaged gluten-free products, eliminate those too. If symptoms subside, you can try each of these foods until you find the culprit.

Additionally, you'd probably benefit from some supplements. Although blood tests are often somewhat misleading, it might be a good place to start. A good probiotic and digestive enzymes may help too.

Hope you feel better soon.

CarlaB Enthusiast
CarlaB
Posted

Knee pain and GI problems were how my Lyme Disease started. I don't know that this is what you have, but please take a look at the symptom list on this page and see.

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