Gluten Challenge

[bendano]

I haven't gotten any replies to my previous post. I guess I am not the only one that is confused over my daughter's case. The one thing I have noticed is that when she is off gluten then put back on (we have done it twice) she gets very sick with vomiting, fever and worse diarrhea. That last 3-4 days then kind of stabilizes. Is this a common thing seen in celiac disease? I thought I was crazy and that she may have had a poorly timed stomach virus. Also if she does get gluten when she is on a gluten-free diet she seems to react worse than when she is consuming it daily. I had suspected a problem with the french fries in nugget oil. She always gets sick if we do fast food french fries. Thanks. Laura

[missy'smom]

I just read your 1st post and what you've described seems normal and not surprizing for someone with celiac disease. I haven't been through testing but from everything I've read, it sounds like your daughter's biopsy clearly points to celiac disease. The fact that the blood test was negative doesn't have too much weight, especially in light of the biopsy and her response to the diet. When you're in constant pain daily you kind of get used to it. You know your still in pain but when the pain starts to go away you feel great relief even if it doesn't go away completely then you start to realize you're still in pain again. But if the pain returns(gluten is re-introduced) then the pain is more of a shock to the system and may feel worse.

I''m not great with analogies or explanations. Maybe this analogy with pain sounds a little harsh and is not necessarily a scientific explanation of how gluten affects the body but it's how I feel. Hope it helps.

Fast food fries are not safe unless made in a fryer that "dedicated"-that means gluten is never introduced into it.

From what you've said, she need to be on a gluten-free diet.

If for some reason I've missed something and this doesn't address what you're thinking please ask more.

As a mom of a kiddo that has problems I'm trying to figure out, I'll say that sometimes it''s easier to figure out what's going on with us. It's harder sometimes to wrap our minds around what's going on in our kids, especially because they're not able to communicate some things to us. I feel like I can't see the trees through the forest. With myself I'm more sure and logical but with him I doubt, question and second-guess everything.

Take care

[taweavmo3]

If your daughter's biopsy showed villi blunting.....she needs to be gluten free, period. That is your diagnosis, regardless of a negative blood test.

And her reactions do not seem strange at all, they actual seem pretty typical for Celiac to me. With my daughter's gluten accidents.....it's always worse if she hasn't had an accident in months. But one time we had two accidents happen within days of each other, and the second glutening, she didn't show any reaction at all. Once the gluten is in her system, it doesn't cause such a violent reaction if she ingests more. Does that make sense????

And ditto about the fast food fries....unless you are certain there is a dedicated fryer, they are not safe. And even then, it's risky, as the risk of cross contamination is still very high. We tend to stay away from all fast food fries now, but occasionally we'll do Chick Fil a fries and a fruit cup.

If you have any questions about food (I have four kids who are gluten and dairy free), this is a great board. You might also read a few Dana Korn books regarding kids with celiac disease...that's where I started, and it really helped get my head around everything. Good luck!

[kbtoyssni]

I imagine that if she gets glutened her intestines and immune system go on overdrive. If she keeps eating gluten after that the intestines and immune system are already irritated so they're not going to react much more. She'll probably stabilize into a general state of unwellness but will no longer have that huge initial reaction.

[hathor]

I think of it this way. One's body can build up a tolerance to something. More is required to see an effect from that substance. Then the substance is avoided for a period of time. The tolerance is gone and the body reacts strongly to a small amount.

[bendano]

thanks for the info. I am continuing the gluten-free diet and learning the best I can about this disease.