Celiac In Remission...still Having Issues?

[buddhakitty]

Hi all,

It's been a while since I've been here and I'm not sure where to stick this topic...so here I go: Recently I underwent another endoscopy and a colonoscopy (at the same time; a procedure my doc affectionately calls "the double whammy") to check on the healing of my celiac disease. They took biopsies everywhere and it all came back healthy - no villi blunted - no sign of chronic inflammation. My GI says my celiac is in remission (though he noted that I must remain on the gluten free diet for life - once a celiac, always a celiac...) I've gained my weight back (and more), I seem to be absorbing better and my IgG antibodies are down to 20, just a tick above the high end of the normal range. So what's my problem you may ask? New issues have popped up, most notably skin issues in the form of little itchy bumps that look like mosquito bites but that only last an hour or so and then rounds of transient joint pain in my shoulders and thumbs that's really not terrible but I'd like to know what's causing it. Also my digestion is a bit better but I'm still having some of my original problems (boborygmi,chronic loose stool, some fatigue, etc.) So I'm left with the diagnosis of "post infectious IBS" as the explanation. I don't think I'm getting gluten from anywhere as I don't eat out and eat a mostly whole food diet at home but I guess you never know...So has anyone else out there been pronounced "in remission" but are still having issues?

[glutenfreeinminnesota]

Hi all,

It's been a while since I've been here and I'm not sure where to stick this topic...so here I go: Recently I underwent another endoscopy and a colonoscopy (at the same time; a procedure my doc affectionately calls "the double whammy") to check on the healing of my celiac disease. They took biopsies everywhere and it all came back healthy - no villi blunted - no sign of chronic inflammation. My GI says my celiac is in remission (though he noted that I must remain on the gluten free diet for life - once a celiac, always a celiac...) I've gained my weight back (and more), I seem to be absorbing better and my IgG antibodies are down to 20, just a tick above the high end of the normal range. So what's my problem you may ask? New issues have popped up, most notably skin issues in the form of little itchy bumps that look like mosquito bites but that only last an hour or so and then rounds of transient joint pain in my shoulders and thumbs that's really not terrible but I'd like to know what's causing it. Also my digestion is a bit better but I'm still having some of my original problems (boborygmi,chronic loose stool, some fatigue, etc.) So I'm left with the diagnosis of "post infectious IBS" as the explanation. I don't think I'm getting gluten from anywhere as I don't eat out and eat a mostly whole food diet at home but I guess you never know...So has anyone else out there been pronounced "in remission" but are still having issues?

I haven't had a another endo, but I had the blood tests and they all came back normal (no antibodies). I still have bathroom issues occasionally, I am wondering if there's something else my body isn't tolerating...afraid to find out :\

But really the joint pain in your shoulders and thumbs you mentioned stuck out to me. I don't get really bad pain, but enough to be annoying pain. It will be there a day or two, then completely fine the next day...then for days/weeks it will be gone and then hit me again. Really pinpointed to one place, too. I have nothing for you, no idea why...but I thought I would let you know you're not the only one

[T.H.]

I don't think I'm getting gluten from anywhere as I don't eat out and eat a mostly whole food diet at home but I guess you never know...So has anyone else out there been pronounced "in remission" but are still having issues?

*raises hand* My villi are healed and my blood levels are good, but I still have issues unless I am very, very careful with avoiding gluten cc like mad. I, too, eat at home and eat whole foods. Pretty much most processed foods makes me feel like crud. If I don't eat that, I feel good.

However, I also notice some pretty nasty joint pain and 'blech' feeling from my few allergens, too. I don't get hives or anything, but they tested as 'barely' positive on my allergy tests, and it feels like they just, I dunno, inflame everything in my body, if that makes sense? So my joints hurt, etc....

If I avoid them along with the gluten cc, I'm good.

Have you had any kind of food journal to see if the symptoms track with anything? For my daughter, when she was having issues as well, we dropped all 8 allergens from her diet and did the food journal. She wasn't allergic to all 8 allergens, and in fact some of her problems weren't to these foods at all, but the diet we were forced to try for her spaced out her problem foods so we were finally able to track a lot of them down. :-)

[buddhakitty]

I haven't had a another endo, but I had the blood tests and they all came back normal (no antibodies). I still have bathroom issues occasionally, I am wondering if there's something else my body isn't tolerating...afraid to find out :\

But really the joint pain in your shoulders and thumbs you mentioned stuck out to me. I don't get really bad pain, but enough to be annoying pain. It will be there a day or two, then completely fine the next day...then for days/weeks it will be gone and then hit me again. Really pinpointed to one place, too. I have nothing for you, no idea why...but I thought I would let you know you're not the only one

Thanks! It's nice to know I'm not the only one still having wacky problems

*raises hand* My villi are healed and my blood levels are good, but I still have issues unless I am very, very careful with avoiding gluten cc like mad. I, too, eat at home and eat whole foods. Pretty much most processed foods makes me feel like crud. If I don't eat that, I feel good.

However, I also notice some pretty nasty joint pain and 'blech' feeling from my few allergens, too. I don't get hives or anything, but they tested as 'barely' positive on my allergy tests, and it feels like they just, I dunno, inflame everything in my body, if that makes sense? So my joints hurt, etc....

If I avoid them along with the gluten cc, I'm good.

Have you had any kind of food journal to see if the symptoms track with anything? For my daughter, when she was having issues as well, we dropped all 8 allergens from her diet and did the food journal. She wasn't allergic to all 8 allergens, and in fact some of her problems weren't to these foods at all, but the diet we were forced to try for her spaced out her problem foods so we were finally able to track a lot of them down. :-)

I am actually keeping a food and supplement journal but I haven't been able to pinpoint anything as of yet. I somewhat suspect that I may have some mold issues. Eating mold encouraging foods like cheese and peanuts seem to exacerbate the issue. I too have to avoid processed foods...they just don't seem to like me anymore.