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Integrous

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About Integrous

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  1. After 15 months gluten free, my antibody numbers have finally normalized and a biopsy shows marked gut healing (from a Marsh 3C to "between 1 & 2"). However, I continue to have severe (crippling) brain fog and memory loss that have not improved, despite a clean bill of health from my neurologist. If you're aware of a doctor or practice in the U.S. that is particularity good at treating the neuro effects of celiac disease, would you please share? Thanks
  2. How is your brain fog? I am now 9 months gluten free and passed every neuro test out there, yet still have seen no improvement whatsoever in my brain fog... losing hope. Sending good vibes your way.
  3. Thanks everyone for the above replies. Lisa - Just before I went gluten-free in December 2013, my Anti Gliadin IgA was >250 and Anti-Gliadin IgG was 54.8. When tested last week, my Deamidated Gliadin IgA was 86 and Deamidated Gliadin IgG was 38. I'm not sure if they are the same tests or not. EMA test was positive in December and last week. With the exception of a slight vit. D insufficiency, all my nutrients were within acceptable range at the time of my diagnosis in December 2013. As of last week, all nutrients were within acceptable range, including vit. D (just barely). Thanks for listening.
  4. I have been fanatically gluten free for over 7 months, yet my tTG IgA antibodies still score literally off the charts (i.e., the value always comes back "greater than 100"). My current celiac doctor admitted that he can't explain my results and has no suggestions on how to proceed other than to remain gluten free. I'd like to get a second opinion from a preeminent celiac doctor, and I'm willing to travel anywhere in the U.S. to do so. If there is any consensus in the celiac community as to the best celiac doctor or program, please share. Thanks
  5. I learned I had celiac disease in December 2013 and have been religiously gluten free since then (although my last blood test in March showed that my antibody levels were still over 200). I had a MRI, MRA & MRV of my brain in January which showed some age-appropriate, non-specific "white spots" on my brain, but no lesions or abnormalities. Five or six weeks ago I began to experience ongoing muscle weakness in my legs, usually when at rest. It then spread to my arms. About 10 days ago, I started to experience muscle twitches all over my body (feet, calves, thighs, arms, legs, chest, back, shoulders, throat) when at rest. The twitches are becoming more frequent and lasting longer. My neurologist said that multiple sclerosis is unlikely based on my prior normal brain studies but ALS is a strong possibility, and he scheduled an EMG in 2 weeks. In the meantime, I am in absolute despair. I've read that untreated celiac disease can mimic ALS, but it doesn't seem possible that I'd get ALS-type symptoms from celiac disease 6 months AFTER going gluten free. Anyone have any insight? Thanks.
  6. I was recently diagnosed with celiac disease. The tTg, EMA & DGP tests run on my four young daughters were negative, but I'd like to have them genetically tested so we know which, if any, to monitor going forward. Their pediatrician said the only reliable genetic test is the HLADQ2/HLADQ8 blood test. Is it true that HLADQ2/HLADQ8 are the only reliable genetic tests? Are there any commercially available genetic tests that are reliable? I've read that insurance companies sometimes use such test results to deny future coverage, so I'm thinking there might be some benefit to staying "off the grid." Thanks
  7. Thank you for your detailed response. I'm sorry that you went through that, but hearing your experience gives me hope. I'm scheduled to get a brain MRI shorlty to look for lesions, tumors, etc., so I'm praying that will come back clean and I can focus exclusively on celiac. One follow-up question: I don't undetrsand the significance of the "Marsh: 3C" classification, but it sounds like you do. Any way you can explain? Thanks
  8. I am a 37-year-old male. For the past 4 or 5 years, I have been experiencing slow but progressive memory loss. For the past 2 or 3 years, I have been experiencing a slow but progressive onset of what I can only describe as a haze or fog in my brain that prevents me from concentrating or understanding complex things. Over the past month, I’ve noticed problems with balance, equilibrium and vision, as well as feeling “hot spots” and weakness in my arms and legs. A recent blood test showed a positive EMA, tTG of 165, anti-gliadin “greater than 200” and vitamin D at 21 (all other values were normal). A a follow-up endoscopy showed “partial to severe villous atrophy (Marsh: 3C) and intraepithelial lymphocytosis consistent with celiac disease.” I have been gluten-free for 10 days and feel mild improvement as to the brain fog, but my balance, equilibrium and muscle weakness have worsened during that time. Two questions: (1) Should I be concerned that my balance, equilibrium and muscle weakness have worsened since going gluten-free? and (2) a neurologist wants to put me on Aricept, which I understand is an Alzheimer’s "memory" drug with some common side effects that are severe. I’m inclined to wait 2 or 3 months to see how much mental improvement I get from just being gluten-free. Does anyone have any thoughts on/experience with Aricept to treat celiac-induced neuro symptoms? Thanks
  9. Thanks for the reply. Am I correct that you and your son go back to thinking clearly once the gluten wears off? I'm looking for a glimmer of hope that my neuroligical effects will go away, as it is starting to affect my work and interactions with family/friends.
  10. I am a 37-year-old male. For the past 4 or 5 years, I have been experiencing slow but progressive memory loss. For the past 2 or 3 years, I have been experiencing a slow but progressive onset of what I can only describe as a haze or fog in my brain that prevents me from concentrating or understanding complex things. Over the past month, I’ve noticed some mild problems with balance, equilibrium and vision, as well as feeling “hot spots” and weakness in my arms and legs. To be perfectly honest, my symptoms have me terrified. A recent blood test showed positive for endomysial antibodies and a t-Trasnglutaminase value exceeding 100 U/mL, and I was told that I have celiac disease and to go gluten-free. I do not fully understand what my blood test results mean. And, I have not yet seen the specialist and do not trust websites for medical information, so I don’t know all that much about celiac disease. But, it’s hard for me to believe that my symptoms could be caused by celiac disease. I am hopeful that someone on this forum who is more educated than I can tell me which, if any, of my symptoms could be attributable to celiac disease, as that might ease my mind a bit. Many thanks.