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Sister's Test Came Back, Negative Help

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nora-n Rookie
nora-n
Posted
nora,

I have the DQ1, 5(D5). I have definite neurological symptoms. My mood, vision, speech, and thinking are all effected. I have also many other symptoms. I use to have "spells" which were awful. I would not be able to think, would have to think very hard about what I was saying, and things would look further away then they really were. Sometimes It would make me sick to my stomach but not always. I have not had one at all since going gluten free. yea!!! My mood has stabilized a lot also. Yea!!!

mebyne

ve you checked out the glutensensitivity forums at braintalk and neurotalk? There is more about the DQ1 there. There is not so much activity right now, but archives are interesting enough.

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nora-n Rookie
nora-n
Posted

fedora, about your grandmother with melanoma--- have you seen all the good reports from patients on ldn? I heard the first time about ldn here in the OMG thread where they sum up almost all alternative things....just google ldn or low dose naltrexone .

nora

fedora Enthusiast
fedora
Posted

hi,

I have been to those links, but just a little. I will check them out more. Thanks

Guest Talia
Guest Talia
Posted
I am DQ3 but this also applies to me. If I had waited to show positive on a blood test I would be dead. The DQ stuff is the gene testing results. When I was tested they considered only 2 genes DQ2 and DQ8 to be 'celiac' genes. They have now found 7 more. Celiac really is a spectrum disease and I hope they start to recognize it as such soon. For many the damage to brain and other organs can be really severe before the GI stuff shows up as more than an annoyance. I suffered terribly from the neuro, joint and skin effects for at least 25 years before the GI stuff appeared. My celiac gene is considered an RA gene here. If they had gene tested me before I had gone gluten free they would have diagnosed me with RA and never looked any further. I am very thankful I was already diagnosed before gene testing was done. I would be in a wheelchair and still in constant pain and all doped up otherwise.
Guest Talia
Guest Talia
Posted

:)

hi,

I have been to those links, but just a little. I will check them out more. Thanks

:) I am sorry everyone is going through this, I am too. I have been sick my whole life.. When I was a child they said I was allergic to myself (I guess that is what they called auto immune disease in those days).

i have been dx with fibro,m irritable bowel, osteoarthritis, osteoperosis, peridontal disease, migraines,terrible allergies, psriosis, Iga very low, thyroid disease, fatique, distended and bloated stomach, you know like everyone else

The big whoop is that i have tested positive with the ELISA scale for wheat and gluten allergies. I tes low On IGa always because i must be Iga deficient. so the other blood work says i am not celiac . i was gluten free for 3 months, and than the doc wanted to do the endoscope. So i ate gluten like a glutten for 2 weeks. (and felt very bad). He took 10 bilopsies, and they came back negative.

From what I read it is still possible to get false negatives and be celiac.

I feel good when I don't eat aqt all, does than say something, anyway the beg question is can youall help me , understand if i am celiac or not :huh: mom hqs sjogrens disease, another autoimmune disease, whaich they also say i don't have. i want to get better. I am 55 and have been incapacipated since 40.

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