Dx With celiac disease In 2003.. Have ?s About Symptoms Coming & Going

[daydrmer]

History:

In 2003, I was diagnosed with celiac disease after I saw a gastroenterologist for severe bloating, constipation/diarrhea that alternated, horrible gas pains, tons of gas, and a ton of other symptoms. So, she did blood work and a bx. The bx was mildly positive, but the blood work was "inconclusive." She instructed me to follow a gluten-free diet and diagnosed me with celiac disease. So, that's what I did! I followed a gluten-free diet for a little over a year and all my symptoms went away. I felt fantastic!!! So, I got lazy b/c I started going back to school again and I had a very pick 2 yo daughter to feed. I started eating gluten again. My symptoms didn't return, so I didn't worry about it.

Fast forward to now:

My symptoms have returned. They've been returning gradually for a few months, but now they are full force again. The cramps wake me up at night in agony.. the bloating is so bad that my loose clothes become extremely tight. The constipation has returned. Everything is back to the way it was

So, my question is - how in the world can symptoms come and go?? Does that mean I don't actually have celiac disease and it's something else? Someone on another board suggested that following the gluten-free diet allowed my intestines to heal and symptoms disappeared for a while b/c of that. As I've eaten gluten again, my body has finally had all it can handle and I am sick again. I googled for help with that and found this board!

Please help!!!

[psawyer]

Welcome to the board. I'm glad you found us.

I would tend to agree with the person on that other board.

A celiac following a gluten-free diet will usually completely heal, and all symptoms will cease.

Reintroducing gluten will cause the autoimmune response to begin again, and damage to the intestines will recur. If this takes place slowly, the result will be similar to what you have seen, that is, a gradual resumption of the symptoms.

In other cases, and this seems to be more common, the reintroduction of gluten causes an immediate and severe reaction.

I think the answer is obvious. The diagnosis of celiac was correct, and you need to go back to eating gluten-free.

[tarnalberry]

Yup - sometimes the damage takes a while to accumulate to the point where you NOTICE it. Doesn't mean it's not there, just means you don't notice it. (Like four days after you dust - there's some dust accumulating again, but you don't *notice* it for another couple weeks.)

Celiac isn't something that can be treated once and then ignored, unfortunately. You must remain gluten free for life.

[daydrmer]

Thanks everybody. I guess I was in denial - especially since the blood work was negative. I just assumed she was guessing I guess I shouldn't have assumed... eh? I especially thought she was crazy when the symptoms didn't return for a while.