Cd Vs. Gluten Intolerance

[LauraZ]

All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

I didn't have any gluten problems until early this year when I had some skin/scalp problems show up. Going gluten-free has resolved everything for me so I took my daughters in for testing and put them on the gluten-free diet. which resolved all the gas pain/indigestion my oldest daughter had.

From what I've read on this forum and elsewhere, once a celiac, always a celiac, and you need to be gluten-free for the rest of your life. However, if you don't test positive for celiac, might you be able to tolerate gluten at some point in your life?

Thanks so much for any input.

Laura

[redheadheather]

I'm not an expert, but, from what I understand at this point is gluten intolerance is for life too... it also is an autoimmune disorder, it just hasn't caused damage to the intestines.

Someone please correct me if I'm wrong - I'm basing this on what the "nutritional specialist" told me as in her opinion my son falls in this category (GI vs. celiac disease).

[KaitiUSA]

All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

First, going gluten free would alter test results so were you gluten free at the time of testing and well before?

Second, the IgG testing is not enough to rule out celiac. You have to get a complete panel done. The fact is that the IgG is the least accurate of the tests.

Third, even with gluten intolerance you need to be gluten free for life...there has been debate about whether gluten intolerance can turn into celiac if the diet is not followed. I think it is definitely possible.

[judy05]

All of the tests results are in as of this week, and both of my daughters and myself test high in gluten grains on the ELISA IgG testing. We all test negative for celiac disease.

I didn't have any gluten problems until early this year when I had some skin/scalp problems show up. Going gluten-free has resolved everything for me so I took my daughters in for testing and put them on the gluten-free diet. which resolved all the gas pain/indigestion my oldest daughter had.

From what I've read on this forum and elsewhere, once a celiac, always a celiac, and you need to be gluten-free for the rest of your life. However, if you don't test positive for celiac, might you be able to tolerate gluten at some point in your life?

Thanks so much for any input.

Laura

<{POST_SNAPBACK}>

I am also gluten intolerant. My GI doc ( who started me on a gluten-free diet ) is now insisting that I can eat gluten (and dairy) because my gene test was negative,

I had no damage to the villi, and my antibody came down. Every time I tried either of these food groups I get sick. I think that he thinks that it is all in my head!

One of the worst things that happen is a migraine headache and they terrify me. There is no way that I am going off the gluten-free diet, not for him, not for anyone. I don't know how to advise you except try it after a while and see how you feel. I think that after being gluten-free you will probably be more sensitive than before.

[VydorScope]

I wonder if some of the confusion about out growing is realted to WHEAT ALERGY which you can out grow, or pick up later in life... but thats not an autimune disorder....

[Nevadan]

I have a non-celiac disease gluten sensitivity, too. Based on the research I've done, this is genetic just like celiac disease, and it has some equally dire diseases related to it even though the intestine may not be among them. Being a genetic disease, we're stuck with our genes for life so while some symtoms may change and appear to allow you to eat gluten, that doesn't mean it's wise.

You may want to have a DNA test done to see where your genes may lead you. I had mine done at Enterolab (gene test alone - $150) since they test for a few more genetic variations besides the two for celiac disease (HLA-DQ2,8). Once you get your results, you can Google them if you want to see what diseases pop up from the search - if you have any of the non-celiac disease gluten sensitivity genes, you will find the results very sobering. I'm of the opinion so far that non-celiac disease gs is equally as dangerous as regular celiac disease; it just affects different parts of the body, particularly neuro related things. I also recommend reading "Dangerous Grains" by Braly for its coverage of non-celiac disease gs.

Bottom line is if your body feels better being gluten-free (my case and sounds like yours, too), it's probably trying it's best to tell you something. Probably worth a listen.

George

[LauraZ]

Thanks so much for all of the responses.

Yes, we were on gluten when the tests were done -- I did take my daughters off after the blood was drawn, assuming that gluten was going to be a problem and I didn't want to wait for the results to come back. In addition to the ELISA test, we had the tTG, which was negative.

My intuition is that this is going to be a lifelong diet for us because they have had their symptoms all of their short lives (while my own had started in mid-life). They also have food reactions to dairy, beef, sugars, eggs, so their diet has become quite restrictive. "Lifelong" when you're 10, though, is more overwhelming than when you are in your 40s! But they hear random stories from people who had wheat allergies as children and outgrew them, so I thought I would ask.

I did tell them that we need to think of it as "today we will not have any gluten" and the future will resolve itself. We are finding some fun things to eat so it makes it easier.

Thanks again,

Laura