I'm Back With More Questions, Please

[bnsnewman]

My daughter has not technically tested positive for Celiac, but she did test positive for gluten sensitivity (as well as casein sensitivity), and she has two positive genes for gluten sensitivity. In trying to explain all of this to both sides of the family, as well as friends and teachers, what is the best way to explain this?

Please tell me if I am wrong, but I thought that the difference between Celiac and having a sensitivity to gluten is the intestinal damage? That Celiac will cause intestinal damage but that a sensitivity will not necessarily cause damage? Though she sure does get sick from consuming gluten.

My sister printed out the list of Celiac safe foods and not safe foods from this site, and when I showed it to another family member over the weekend, she said that the list was for Celiac and not gluten sensitivity. Ok, true. Can and should people with gluten sensitivity follow the same guidelines as people with Celiac?

And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore.

Thanks again. Natalie

[Lisa]

My daughter has not technically tested positive for Celiac, but she did test positive for gluten sensitivity (as well as casein sensitivity), and she has two positive genes for gluten sensitivity. In trying to explain all of this to both sides of the family, as well as friends and teachers, what is the best way to explain this?

Please tell me if I am wrong, but I thought that the difference between Celiac and having a sensitivity to gluten is the intestinal damage? That Celiac will cause intestinal damage but that a sensitivity will not necessarily cause damage? Though she sure does get sick from consuming gluten.

My sister printed out the list of Celiac safe foods and not safe foods from this site, and when I showed it to another family member over the weekend, she said that the list was for Celiac and not gluten sensitivity. Ok, true. Can and should people with gluten sensitivity follow the same guidelines as people with Celiac?

And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore.

Thanks again. Natalie

Whether diagnosed with Celiac or gluten sensitivity, the diet is the same. You are correct, with Celiac if you ingest gluten you will have intestinal damage, with a sensitivity you can have the very same symptoms without intestinal damage. It is often confusing to learn or explain.

[Ursa Major]

Natalie, it is very unlikely that your daughter's allergy tests for gluten and casein will show anything (even though it is possible). Intolerances will not show up on allergy testing.

In people who have a gluten intolerance/sensitivity without intestinal damage will get damage elsewhere, like neurological damage, and mental health issues because the gluten attacks the brain more than the gut. It is just as serious as celiac disease, and the same diet guidelines apply to both.

People with your daughter's genes are frequently misdiagnosed with MS (because the gluten can cause lesions in the brain, and cause the same symptoms as MS), depression, schizophrenia, and others. Also, she could end up with gluten ataxia, neuropathies, crippling joint pain, cancer, vision problems and a host of other impairments.

You need to take this very seriously, no matter what your doctor thinks of Enterolab. You know that your daughter can't tolerate gluten, and that those results were accurate. Take a firm stand with your family, and tell them that you are responsible for your daughter's welfare, and she is not to have any gluten under any circumstances.

[Karen B.]

----snip---

And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore.

Thanks again. Natalie

Natalie, it sounds a second opinion might be a good idea. Some docs still aren't up to date on all the symptoms and effects of Celiac.