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Gluten Sensitive

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After suffering years from various symptoms, my doctor tested me for celiacs (although I don't know which test he used, something with blood) and a wheat allergy. Both came back negative, but he told me to try a gluten free diet. After going on one for two weeks, I felt amazingly better. He said that I probably have a "gluten sensitivity" or "gluten intolerance" but I'm not really 100% sure what they means.

How strict should I be in my gluten-free diet? I've noticed that if I eat anything with gluten ingredients on the label (even maltodextrin), I feel horrible and I'm depressed for three days afterwards. I've been going gluten free for about 6 months and I'm never going back! I haven't felt this good in years!

I'm just wondering how strict I need to be in doing gluten-free foods? I keep seeing labels that say "natural and artificial flavors" and "manufactured in a facility that contains wheat" but I don't know if I need to stay away from them.

Is it possible that I have Celiacs and the test was wrong? I'm not even sure what the term "gluten sensitive" means and my doctor couldn't really explain it to me. I keep looking online for gluten-free things but everyone seems to have Celiacs and no one is really "gluten sensitive." What is happening in my body when I eat gluten that makes me feel so bad if it's not an allergy or Celiacs?!? Am I doing long-term damage if I eat something with traces of gluten?

Does anyone have any good resources for people who are gluten intolerant but don't have Celiacs?

Thanks for your help!

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Maltodextrin is gluten free if made in North America.

You need to be very careful. CC is a big thing for celiacs. Crumbs from breads and crackers can make some members here very sick for days.

As for the processed in a factory with wheat, that falls back to personal choice. Some of us do, some of us don't.

~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!


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You need to be just as careful as if you were diagnosed with Celiac. Gluten sensitivity isn't less serious than Celiac. It can come with all the same damage and long term problems.


--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Gluten sensitivity just means that the celiac damage hasn't taken place yet (it takes time), the test for celiac yielded a false negative (which happens a lot), or that gluten is damaging one's body (but in a different way than seen with celiac with its villi damage).

It is every bit as serious as celiac and has the same need for 100% adherence to the diet. This includes investigating things like flavors (celiac.com has lists of safe and unsafe ingredients, and those that need further investigation -- https://www.celiac.com/categories/Safe-Glut...B-Ingredients/), checking out medicines, supplements & personal care items, and avoiding cross-contamination in your kitchen, at restaurants (we can but try :( ), and what we buy. You can't just go by those "processed" warnings, since they are voluntary. You can usually search online and see if folks have a problem with particular products or companies. I avoid the "processed on the same equipment" stuff and monitor my reaction to "processed in the same facility" food. But I monitor my reaction to about everything :rolleyes:

Since the diet is the same, you can use this board. Many of us are diagnosed gluten intolerant and don't have that "celiac" label. Mine comes from Enterolab testing and it is confirmed by my response to the diet.

I just read something about maltodextrin today on another board by a dietician who did some research. Apparently maltodextrin in foods regulated by the USDA instead of the FDA can contain maltodextrin made from wheat and that need not be disclosed on the label. The allergen labeling law only applies to FDA food. Whether there is much wheat maltodextrin in USDA food or this product still contains gluten, I don't know. I would link to this post but it is on a Yahoo group.

Of course, you can react to other things in addition to gluten. If maltodextrin makes you sick, don't eat it. It could be that you have a problem with MSG, which maltodextrin frequently contains. For a list of hidden MSG sources: http://www.truthinlabeling.org/hiddensources.html

Here is an article about the entire spectrum of gluten sensitivity and another about Enterolab and its testing that finds reactions before standard celiac testing:



McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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