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darlindeb25

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Latest Celiac Disease News & Research:

Everything posted by darlindeb25

  1. darlindeb25
    Gemini...I agree, well said.
  2. darlindeb25
    I read yesterday...as long as cheese has 0% sugar, it is lactose free. When lactose is a problem, it's the sugars in the dairy product that cause you to react. So, since I can't eat cheese, cottage cheese, yogurt, ice cream, I now realize, I am probably casein intolerant, not lactose intolerant.
  3. darlindeb25
    Even if an employer thought they could ask a doctor for your medical info, the doctor, according to HIPAA cannot release any info without a records release form signed by you. I work in a doctor's office and deal with HIPAA everyday. The only time a doctor can release info, is if you, as the patient ask the doctor to send his/her exam results to your PCP...
  4. darlindeb25
    Thanks for the Vit D advice...I was thinking I probably need to increase it. So, would you take it all at one time, or divide it up over the day? I do try to get some sun, yet it's difficult. The best sun here is when I am inside working. Then, you throw in the fact that it rained 26 of 30 days in June here...wasn't much sun then.
  5. darlindeb25
    After 9 years of gluten free, I am now lactose intolerant. It reared it's ugly head very slowly. First it was ice cream, with coughing and congestion after eating it, I gave it up. Then came cottage cheese and yogurt problems, I gave them up. Next was my cheese, and I love cheese, yet could not deal with the constipation it was causing, I gave it up....
  6. darlindeb25
    I go to Michigan to visit with family every year. My sister is gluten free, as is our dad, yet I am intolerant of so much, I take my own with me. This year I froze meals, and I always take my own pan along. I can buy food, stores are stores, no matter where you go. At first my family had a hard time understanding why I do what I do, now, they know it...
  7. darlindeb25
    My Vit D was 26, and my neuro said it was fine. I know it's not fine, I know optimum is 50, so I am taking Vit D3, 2000IU's. I've been told by a few that 2000IU's will not cut it. I am asking for bloodwork to be done again in August. Your B12 is not high! I take 5000mcg of B12 methylcobalamin daily, and my level is 1016, down from 1237. My neuropathy...
  8. darlindeb25
    Are you sure they are gluten free? Magnesium can cause stomach issues. I take Jarrow Methylcobalamin B12, and I take Spring Valley D-3 (Walmart), and have issues with neither. When I first started taking B12, it did bother my stomach. If your B12 is cynacobalamin, it is harder to digest and could be causing a problem...methylcobalamin is much better for...
  9. darlindeb25
    We would of never thought we were from a celiac family either. Thing is, many, many family members had issues, but no one knew it was gluten. My sister was diagnosed celiac 9 years ago last March. She and I had the same symptoms, yet I had no money and no insurance, so in July of that year, I too went gluten free. Four years later, our father went gluten...
  10. darlindeb25
    There are many who will tell you gluten on the skin doesn't matter, but for some of us, it does. I get these rashes from topical gluten, corn, and soy. I also get a nasty rash on my tummy when I eat an offending food, sometimes not sure what caused it. This last time, I had raisins. Not sure if it's the sugar content that caused it or what. I do...
  11. darlindeb25
    I will not use it. They can only test to 5ppm, no lower. I react to the tiniest amount, and do not trust this, nor barley grass, nor wheat grass.
  12. darlindeb25
    I had panic attacks for years before going gluten free. I was diagnosed with panic attacks, anticipatory anxiety, and borderline agoraphobia...I even was in therapy for them. Now when I look back, I was given Xanax for the panic, and of course, Xanax contained gluten,,,feeding the monster, so to speak! I was on Paxil when I went gluten free, and eventually...
  13. darlindeb25
    I'm on Long Island, in the Islip area. Do you have Stop-n-Shop, Waldbaums, Shoprite, or Pathmark? They all carry a line of gluten free products. I do most of my shopping in Stop-n-Shop. I do not buy much in the line of gluten free processed foods, but I do know they have them...Tinkiyada, Shabtai Bakery items, Glutino, yogurts, ice creams (even the speciality...
  14. darlindeb25
    Yes, God Bless America, and I hope this country has many more birthdays as the land of the free.
  15. darlindeb25
    The percentage is much higher than you might think. Doctors give us the run around, most never even suspecting celiac. It is getting better, they are much more aware now. 9 years ago when I went gluten free, they were thinking celiac was extremely rare. My sister is a diagnosed celiac, 9 years ago last March. Her doctor thought celiac was extremely rare...
  16. darlindeb25
    Have you had you B12 or Vit D tested...they both will cause headaches when deficient...as will low iron. It seems we gluten intolerant/celiac people need higher levels of vitamins than the average person. Most of my levels are just inside the "normal range", which doesn't necessarily mean I can do ok with my levels that low. Last June, my neuro did...
  17. darlindeb25
    Sometimes, when you go on a gluten free diet, and you still do not lose, it may mean you have another intolerance. If you are eating a lot of processed gluten free foods, they are much heavier than regular old wheat flour products. Try eating natural foods, nothing processed, stay away from high fructose corn syrup, and sugars. When I was my sickest...
  18. darlindeb25
    On the other hand, are we assuming that everyone's villi heals? I hate assuming anything. Doctors can't tell us that everyone heals, they don't know. Even Dr. Green says there are people that heal very quickly, some that take longer, and some may not heal properly. They average the healing time to be around 2 years. I have to wonder, when some of us...
  19. darlindeb25
    It's a great idea Gentleheart!
  20. darlindeb25
    TrillumHunter and Fiddle-Faddle---So very true. This is more assuming. I do not believe Dr. Fine has an obsession with gluten, he knows his stuff, plain and simple. A wonderful book that most of us have read, The Gluten Free Bible, by Jax Peters Lowell, even lists Dr. Fine as one of the Who's Who, the list of Celiac Savvy doctors and Medical Centers...
  21. darlindeb25
    I have never heard this before. Have you ever been tested for spastic paraplegia? This is a ligament/muscle problem. My grandson is now 10, and was diagnosed at 5 yrs old of this disease. He walked on his tip-toes from the day he started walking. His sister, my granddaughter has the disease too. She never walked on her tip-toes, but she stubs her...
  22. darlindeb25
    The doctor I work for often makes me feel this way. A doctor, no less! Codetalker is correct. If a divorce happens, it's much bigger than the celiac disease. I a person really loves you, they help you get through the disease, they do not turn their back on you. It would have happened anyways. I know my being sick wasn't fun for anyone else...
  23. darlindeb25
    What a crappy way to gain knowledge! BUT, now we all know not to try it! Thank you.
  24. darlindeb25
    What is emmer? I have never heard of it before.
  25. darlindeb25
    Carecare, does she have a Kroger near her. Kroger is very good about gluten-free items, the Kroger near where I used to live even had a huge special diet section. I grew up in Ashley, Michigan, and the Kroger in St' Johns is very good. Meijers probably has gluten free foods also, as does Walmart. Most big grocery chains now carry gluten free foods, we...
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