"gluten-intolerant" Vs. "celiac" - Does It Really Matter?

[RiceFiend]

I've been on a gluten-free diet now for almost 3 years and felt the dramatic difference it made in my relationship to eating and virtually living in my bathroom after only the first two weeks.

My doc advised me not to get the small biopsy or even bother with the blood tests because of the profound difference the diet has made. Since I still routinely eat out and share a toaster, etc. (but not MY utensils, margarine tub, peanut butter or jam) with other family members, I occasionally get a severe diarrheal attack that I attribute to likely having been exposed to an intolerable level of gluten somewhere. My symptoms generally hit either to wake me up out of sleep at the wee houirs of the morning or first thing in the morning just to mess with allowing me to plan anything. It's like my system just needs to empty it's entire contents to get rid of some offending crumb sitting on top.

So, if it were only me, I think I might be relatively fine with this. However, I have one small child that has nasty stomache cramping and diarrhea often (5+ times per week) at mealtimes and he has tested negative to the blood IGE testing for celiac. Should we go further in testing him or would it help to go further in testing me for the sake of proving/disproving celiac heritage? How harsh would it be to withhold gluten from his diet for two to three weeks to see if there's a difference (considering his breakfast and lunch staples include lots of wheat products)? There is now a second child in the picture too and I will be watching the introduction of solid food VERY carefully in a few months when it's time for this baby to eat his first foods.

So many questions. There must be more of you here who have issues with your kids and your celiac and whether or not the kids are affected? Advice?

RiceFiend (at least I am now... risotto is now my favourite along with Kinnikin Honey Rice Bran Bread)

[CarlaB]

First of all, you need to spring for your own toaster, sharing is a no-no! And, I hope you're careful when you eat out.

You could always do a gene test to see if you have the celiac genes. According to Enterolab, the only genes that are NOT gluten intolerant are the DQ4 found in Asians, so virtually everyone has gluten intolerant genes, but it might be good for you to know if you are dealing with celiac or not.

Some people with gluten intolerance also get severe symptoms and even villi damage (though I've only "met" one on this board without a celiac gene and with villi damage).

Has your child had the full celiac panel? That would be IgA, Ttg, and a few more. I think Ige is an allergy testing ... someone else will know for sure.

[tarnalberry]

...

I occasionally get a severe diarrheal attack that I attribute to likely having been exposed to an intolerable level of gluten somewhere.

...

and he has tested negative to the blood IGE testing for celiac.

...

How harsh would it be to withhold gluten from his diet for two to three weeks to see if there's a difference (considering his breakfast and lunch staples include lots of wheat products)?

You *absolutely* need to avoid gluten. There is no way to be certain that you are NOT damaging your intestines, and a lot of signs that say you are.

Blood testing for celiac wouldn't include IgE tests, so I'm confused. IgE is the standard immune molecule response for standard allergies, which celiac is not. The standard blood testing for celiac includes testing for IgG and IgA antiboides. Do you know what the specific results were? Not to mention the fact that blood tests can be unreliable at times.

It needn't be difficult at all to go gluten free, and breakfast and lunch needn't be complicated, but it may require getting inventive and make some new standards working with your son.

[darlindeb25]

Personally, I feel there is no difference in how you take care of yourself. If you have celiac disease or are gluten intolerance, the treatment is the same. I also believe that celiac disease is the end result of years of damage for some, I feel that you can have aquired celiac disease.

With your child, the decision is yours. If you feed the child gluten free and his symptoms disappear, then I would believe he needs to live gluten free. If you have him tested for celiac disease and you get a negative answer, yet gluten free greatly improves his health--would you let him eat gluten just because a tests says it doesn't matter.

I wish I had known about celiac disease or gluten intolerance when my kids were young. I would have had them gluten free to see if it helped.

[Guest cassidy]

I would definitely recommend trying your child on a gluten-free diet. It would make sense that celiac/gi is what is wrong since you obviously have it. It seems like the people who have been off gluten since they were kids have an easier time adjusting to the diet because they don't remember their gluten eating days. Plus, if your child has a problem with gluten and you keep feeding him large amounts of gluten, whether he has celiac or not, there could be long-term health consequences. There are plenty of people who have had complications from eating gluten and tested negative for actual celiac.

As for yourself, I think you would be better off with your own toaster and making sure you stay away from those crumbs. I guess you could do a gene test to see if you actually have celiac if that would make you stay away from crumbs more. It can't be good for your body to have D regardless if it is celiac or gi.

[RiceFiend]

I would definitely recommend trying your child on a gluten-free diet. It would make sense that celiac/gi is what is wrong since you obviously have it. It seems like the people who have been off gluten since they were kids have an easier time adjusting to the diet because they don't remember their gluten eating days. Plus, if your child has a problem with gluten and you keep feeding him large amounts of gluten, whether he has celiac or not, there could be long-term health consequences. There are plenty of people who have had complications from eating gluten and tested negative for actual celiac.

As for yourself, I think you would be better off with your own toaster and making sure you stay away from those crumbs. I guess you could do a gene test to see if you actually have celiac if that would make you stay away from crumbs more. It can't be good for your body to have D regardless if it is celiac or gi.

Thanks for the suggestions. I'm currently planning on trying the gluten-free diet over the summer with my son since I'll be home this summer with the baby. As you know it's VERY difficult to go gluten-free when the #1 staple in school lunchs is a sandwich or other bread product. I'm still not very fond of the rice breads out there so I don't want to force them on him unless needed. In the summer we'll be able to avoid bread and other gluten-carrying food products for a few weeks by eating exclusively at home. I'm nervous that the results will indicate yet another gluten-free diet for the home. There go my food bills!

RiceFiend

[gfp]

So far as I have seen there is no consistent definition between celiac disease and gluten intolerance.

Some MD's take one definition and others don't differentiate... indeed the most serious researchers don't seem to differentiate at all.

For every definition you find that says one is A and the other B you'll find another conflicting or unrelated definition...

For instance some people differentiate on genes, if you have one set or another set... wheras others differentiate based on biopsy and others on different antibodies... or you can view it as a continum.

I view all divisions as EXTREMELY unproductive. Many people here say "I don't have celiac disease, I'm gluten intolerant" ... Yeah sure... if it makes them comfortable lying to themselves then I guess its OK but its particularly bad for everyone else they set out to confuse just so they can have the label they want.

We simply don't know enough about the disease to make productive subdivisions and then each one bandied about is simply throwing a whole net full of red herrings to the larger part of the medical community who's knowledge of either is pretty poor to start off with.