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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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    • knitty kitty
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      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
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