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darlindeb25

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Everything posted by darlindeb25

  1. darlindeb25
    Thank you CeeCee, making other people smile is always a good thing!!! The neuro I have now, specializes in MS. The first neuro (in the same office) told me there are no signs of MS in my MRI, and he never mentioned it further. My neuro now, Dr. G. has not mentioned MS to me either. My mom has fibromyalgia, she also has a DQ1 gene, but has never...
  2. darlindeb25
    Glutens used to give me diarrhea, severe diarrhea. Soy, corn, and rice cause me to be constipated, just as severely as gluten caused diarrhea. Otherwise, they all cause skin rashes, joint problems, neurological problems...an overall feeling of fatigue. Some people can eventually go back to grains, other than glutens. I haven't been able too. I have...
  3. darlindeb25
    Skippy All Natural Peanut Butter!!! I do not eat hardly any processed foods. Can you handle natural sugar (fructose) such as in fruits? I buy Dole packaged fruits, with no high fructose corn syrup, but there are natural sugars in these fruits, as in all fruits. I also buy sugar free applesauce, but I do not buy sweetened with splenda applesauce....
  4. darlindeb25
    GFP is correct, the only blood test that can possibly show celiac disease is gene testing, once you have been gluten free. I am not even sure they are accurate. I mean, they definitely tell you which genes you have, but for now, I don't think they have actually determined which genes truly can cause celiac disease. Maybe you should do some researching...
  5. darlindeb25
    I love that, and I agree totally.
  6. darlindeb25
    You are a text book case for neuropathy too. Cell phone vibrations is just like it sounds, I get the feeling on the bottom of my feet that I am standing on a cell phone that is set to vibrate!!! I swear my foot is ringing!!
  7. darlindeb25
    Were you listening to 103? We have a man locally who is a radio announcer, his daughter was just recently diagnosed with celiac disease. He has pledged that he will raise awareness for all of us. He has been in touch with our support group, Suffolk County Celiac's and has been very vocal on the radio. I think it's great!!!
  8. darlindeb25
    I'm answering your page!!!! Yes, I am seeing my neurologist for my neuropathy, and yes, he does feel vitamin and mineral deficiencies probably caused it. He can't tell me it will get better, but we have decided I have slowed the progression, maybe stopped it. I have been gluten free for 8 yrs, so a reversile is probably out of the question by now. I do...
  9. darlindeb25
    I have been researching coffee, just to see what I can find. Open Original Shared Link A very informative link about how we get coffee, I have never read this before. You learn something everyday! Open Original Shared Link Open Original Shared Link Now, we also know that if we are intolerant of corn, some gluten free flavored coffee...
  10. darlindeb25
    Open Original Shared Link PA is pernicious anemia, a severe B12 deficiency. Not everyone with a B12 deficiency has PA. Here is another good site: Open Original Shared Link Depending on which doctor you talk with, taking extra B12 may or may not be beneficial. My PCP says he feels taking B12 just gives you "rich" urine, but, he then says he has many...
  11. darlindeb25
    I read it as saying you have double DQ1 genes like me and many others. Many doctors feel double DQ1 is not celiac, but gluten intolerance. In truth, double DQ1 genes mean, double trouble. I am soy intolerant too. Some people who can't eat soy, can still have soy lecithin, some can't. Some say the protein in soy that makes us ill is not in lecithin...
  12. darlindeb25
    Have you told your doctor about this? Have you done a sleep study? It seems more and more people are suffering from sleep apnea. I didn't realize I had a "real" sleep problem. Then my neuro diagnosed me with sleep apnea, I did a sleep study, and now I know I do have it. A few weeks ago, in another forum, my friend Al bumped an old thread up and...
  13. darlindeb25
    Well golly Richard, I guess you can't back your opinion. You want all of us to believe you on your say so, but you tell us to back everything we say with links. SPICENATOR3000---I have never liked flavored coffee's so that hasn't been a problem for me. The vanilla bean idea is a good one for those who do like flavored coffee's. There was a time...
  14. darlindeb25
    I haven't been to Montauk...I live in East Islip, which is just outside of Heckscher State Park on the Great South Bay. We have an IGA here in Bohemia, and they do carry some gluten free products,flours, cereals, and such. If there is a Stop & Shop near Montauk, they also carry gluten free products, and there seems to be Stop & Shop's everywhere...
  15. darlindeb25
    I react to most of the grains when they are in soaps...wheat makes me break out in hives, oats, corn, and soy make me itch. Research is being done, yet Celiac/Gluten Intolerance/Gluten Sensitivity is still very much in it's infancy. I truly do not believe they know enough yet about all the far reaching effects of gluten intolerance. There are so many...
  16. darlindeb25
    I have read this somewhere before too, right now I can't find a link, but that doesn't mean it isn't true. When we hear something that may be a problem, it's always good to mention it, that way others do know enough to check and make sure what they ARE using doesnt contain gluten. Thank you for the warning Whimsikay!! I was glutened by Hazelnut Coffee...
  17. darlindeb25
    That's very true, they are not Doctors, but they are very intelligient people who know what they are talking about...MrsD has her own website, I think, and is one of the most trusted people in that forum. You haven't listed any sites to back what you are telling us. There is a lot of info out there...wrongdiagnosis.com has a B12 thread that Sally Pacholok...
  18. darlindeb25
    If you have not taken B12 yet, then ask your doctor for a B12 level test first. Once you take B12, the level isn't true. GI docs and PCP's do not deal with neuropathy like a neuro will. The neuro also does B12 testing, and if you are celiac, then B12 may be a big issue for you. It's your pain and when you can't deal with it anymore, you will find...
  19. darlindeb25
    First, both numbers are too low for a good level of B12. Doctors still go by a normal range of 200-1100, but, if you have any nerve pain involvement, those numbers are too low. I take 3000mcg of B12, sublingual methycobalamin, and my level is now 1013, 3 yrs ago when I was taking 1000mcg, my level was 1237. The normal range is not correct. A level of...
  20. darlindeb25
    Tylenol is gluten free, I take Tylenol Arthritis. You might want to try Aleve. You take it 2 x's a day, once when you get up and once when you go to bed...it doesn't work immediately, give it a few days, and you can take other pain relievers during the day with it...just always follow the rules with it and never take it for more than 2 weeks at a time....
  21. darlindeb25
    Yes I have had an MRI to rule out MS and anything else that might be a problem. I too have neuropathy. I had a brain MRI and a cervical MRI last year. Both came back ok with the exception of one empty cell! I guess it's the best way to rule out MS. Good luck!
  22. darlindeb25
    Thanks TrillumHunter, I will ask my doctor about this one. I had never heard of it before.
  23. darlindeb25
    I have been gluten free 8 yrs last month. This last January, I was glutened by an OTC medicine. I was sick for 3 months. Why do you want to do a challenge? Are you questioning if gluten is really the problem?
  24. darlindeb25
    I have been going to physical therapy for over a month now, yesterday being my last one. My therapist seemed nice enough, but I now feel he has let me down. I feel like I was just a paycheck to him. I didn't go in expecting miracles, but I did think I wouldn't leave hurting more than I did before going. My PT is on my neck, into my shoulders, suppose...
  25. darlindeb25
    Everyone is different, everyone will have their own healing time. 2 yrs is an average number, but not necessarily true for all of us. It is true, nerves heal very, very slowly, and often times, while healing they can cause as much or more pain as they do when dying. Nerves are very tempermental. I was diagnosed with carpal tunnel over 10 yrs ago....
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