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Amber M

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Everything posted by Amber M

  1. Amber M
    My 1 biopsy said I was negative for Celiac and then my gene test says I am gluten sensitive with genes from both parents making it worse. And, if I contiued to eat gluten, I could develop Celiac disease. I have other severe symptoms and it has been diagnosed as Gluten Ataxia (affecting the cerabelum (base of the brain) causing damage to the motor and nervous...
  2. Amber M
    If I ate that chicken salt with those ingredients, I would have to be hospitalized.. When in doubt, go without!
  3. Amber M
    Do you have a nutritionist? You really should consult a professional. Can you eat rice? Celiacs can eat other grains sometimes. Do gluten free grains bother you? Some do me, but I eat rice no problem. Just make sure it does not have additives, like flavored stuff.
  4. Amber M
    Cool! I take daily med. for the migraines. I don't dare to cut down and find out yet, but will in the near future hopefully. My vertigo is getting better. The numbness, tingling, twitching is gone some days and rearing its ugly head others. My bowels are up and down. You see I had severe constipation from gluten the last two years, after years of Dia...
  5. Amber M
    Me thinks me gets it! At least much better. Thank You.
  6. Amber M
    Hi Lisa! I live outside of Bangor, in Milford. Nice to meet you
  7. Amber M
    My Gene tests are below with my signature. Is there any experts out there who can give me further explanation of the number stuff and the subtypes? I understand I do not have Celiac, but gluten sensitivity and they said I have gluten sensitive genes from both parents and my children will have at least one. I have gluten ataxia and lower colon problems...
  8. Amber M
    Here my results: HLA-DQB1 Allele 1 0301 HLA-DQB1 Allele 2 0603 Serologic equivalent HLA-DQ 1,3 (subtype 7,6) It says I have genes from both parents and my children will have at least one. I am gluten intolorant and have "gluten ataxia" and lower colon problems (don't know exactly what yet) My daughter had Graves disease for years until she also...
  9. Amber M
    Okay, Now you are really blowing my mind!!! I have had "sleepers paralyisis" (which is considered in the same family fo Narcolepsy) for years, since my early 20's! I develped migraines shortly after. I have been on beta blockers for years for all of it!!!!!!OMG My neurologist at the time thought I may have had seziers, but then he didn't think so. I...
  10. Amber M
    Sorry, My spelling used to be so good, but my brain is not working lately. I thing I spelled schzophrenia wrong (twice) Bear with me.
  11. Amber M
    Well, I just got my gene test back. I have DQ 1 and DQ 2 with subtypes, 7and 6. It explained that I got the genes from both parents and my children would have one of the genes for sure. (my daughter has 3 auto immune diseases and she does not want to face the possibility of it being from gluten. I am working on her. But anyway, It explains that I do...
  12. Amber M
    I had a severe gut ache the day of my biopsy, but no blood or vomiting etc. The next day I felt better but later had the worst occular migraine in my 20 or more year history of migraines. The visual was so bad and caused a partial black out in my eye. I was so scared I called a nurse friend. She came and monitored my blood pressure and pulse for awhile...
  13. Amber M
    Hi, just wondering if your daughter is gluten free or just on the enzymes with gluten still? Has she been tested for Celiac? All the research I have read on the gluten enzymes says that it is still in trial and should not be a replacement for staying on gluten if you have celiac disease. I was concerned because you were not specific on that issue. I worries...
  14. Amber M
    My Celiac girlfriend had the worst reactions ever to the natural stuff with barley grass. Barley is Wheat I understand. Do not take that one!!!!! Thats like the nutritionist that I told I was allergic to Soy too, and she put me on a SOY diet!!! Dah!!! We need to be our own advicates. I have learned to read the labels no matter what someone says. My...
  15. Amber M
    I had the reverse problem before I was gluten free. I take magnesium for that as well as neurological symptoms. You may very well need suplements anyway. The mag. is what cures me. There is always prunes or prune juice. Must be nice not to have the D anyway! But I know it can be as bad not going too. More Fresh veggies and fruit too. Check with your...
  16. Amber M
    Precess of elimination I guess. Thats what I am doing right now. I take 2 steps foward and 5 back it seems. I try not to get too upset, but I just want to be well!!!!!!!!! I don't know what I'd do if I didn't have all of you. I helps me to realize I am not alone. Thanks and good luck!
  17. Amber M
    I had the blood test and the endiscope biopsy after going gluten free. They did an outdated blood test and one biopsy of the duad. which came back negative. My allergist had me do the challenge diet and I got better, then very ill again. That was enough for me. But, I think my daughter has it, and does not want to take it seriously, so I decided to have...
  18. Amber M
    If you have truly been a year with no gluten, I would think you could have healed alot by now, but some adults take 2 or 3 years to heal and a small amount don't heal from what I understand. You can have other intorerances in the mean time, or have other food allergies as well. I am allergic to soy and other things besides wheat-gluten. Now if I slip...
  19. Amber M
    Just butting in a bit. I had lots of the same problems and was taking an "acid reducer" because of it, when I discoverd that its long term use was disasterous to the stomach and to digesting my food properly. Just a quick mention to make sure your not on acid reducers instead of some kind of digestive enzyme. I switched to "Digest" by Enzamedica. It has...
  20. Amber M
    Well, were you gluten free when you had the blood test? I was, and it came out negative. Plus I found out I had an outdated test! The challange diet showed me the truth! I got sicker than a dog with many things including neurological symptoms along with digestive. Did you have a endiscope with biopsy? That can come out negative if you have been gluten...
  21. Amber M
    Harry, I had the same thing happen, and was sure I was not eating gluten. It sounds like you are not eating it either. I found I had had trace amounts in some things after all a few times. When it said "wheat free" I discovered it could still have barley, rye or other sources of hidden gluten. It has to say "gluten free", then can still have trace-so many...
  22. Amber M
    I personally haven't heard it put like that, but I am fairly new to this too. It seems like they made it sound like "no big deal." Obviously, they don't know much about it. One doctor I went to once a few months ago said, "Why bother to spend the money on tests (I have insurance), just stop eating it, and we'll call it Celiacs." And further said, "the...
  23. Amber M
    Welcome! This site is the best I have found! Sooo much information. I hope you are strictly gluten free. Do you know alot about celiac? There are very serious auto immune diseases you can end up with if you fool around with the diet. Read around here when you can. There are also great recipes your wife may want to try! Good luck.
  24. Amber M
    I 100% agree with "mushroom" I would have said exactly the same, as I tried, and alot of the grains just don't settle right now. I am taking digestive enzymes that are beginning to help. I have developed other food intolorences as well. I have been allergic to Soy for years. I don't trust the restaurants right now. I just don't eat out. But when I do...
  25. Amber M
    I had the same problem today, exactly! I think I had contaminated food this week end. Yes, there is a conection, I feel. I have had the migriane problem for 20 years. Just went gluten free 4 months ago. I have had sinus and ear problems for many years too. I have had to have ear tubes for 20 years due to fluid. The brain fog is from gluten, but migraines...
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