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DebJ14

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by DebJ14

  1. DebJ14
    I have Celiac, dermatitis herpetiformis yet I am not allergic, nor sensitive to wheat! Celiac and dermatitis herpetiformis is the autoimmune reaction, which is different from an allergic reaction.
  2. DebJ14
    We did!
  3. DebJ14
    Our son was being treated for pericaditis and lupus when he was a teen. Because he was on large doses of Plaquenil, NSAIDs, and Prednisone he was prescribed a PPI. Instead of just a 14 day course as now recommended, he was on it for nearly 2 years. He was misdiagnosed, so the only drug he actually needed was the steroid for the pericarditis. It was drug...
  4. DebJ14
    You won't be totally free of symptoms if gluten is not your only problem. Once your immune system gets a break from spending all its time attacking gluten it goes after the other substances that you are either allergic or sensitive to. Many with gluten issues also have problems with dairy and yeast too. After nearly a year of being gluten-free after that...
  5. DebJ14
    Thankfully, when I was diagnosed our doctor, who specializes in Celiad Disease, insisted that my first degree relatives get tested. My 82 year old father came back positive, which explained his lifetime struggle with a duodenal ulcer, according to my doctor. When our oledst son came back positive the doctor insisted that we address his children, who...
  6. DebJ14
    That sounds very similar to my son's pain. However, he has been on a gluten free diet since 2007, so we know it is not that. His doctor diagnosed gastritis and put him on Prilosec. That just made things worse. This all started with a bout of food poisoning from a Mexican restaurant. After researching on our own and after speaking with our nutritionist...
  7. DebJ14
    It could be the yeast. My allergy testing came back off the charts positive for both brewers and bakers yeast. Once I went to a yeast free gluten-free bread, my problems stopped. I think yeast, like dairy, is another thing that lots of those who cannot eat gluten have issues with.
  8. DebJ14
    You need to be careful at Mexican restaurants and ask lots of questions. Our son just found out last week that their favorite Mexican restaurant is now using regular soy sauce to marinate the fajitas. They got a new chef and he changed the recipe. The waiter brought out the Chef who agreed to clean the grill and cook them non-marinated filet mignons...
  9. DebJ14
    After I went Gluten Free, my lifelong battle against those mouth ulcers ended. I haven't had one in 15 years. My dentist was thrilled, and very interested in the gluten connection. I gave him several articles to read. He said he has refered many patients to the local doctor best known for treating gluten sensitivity/celiac and said that every patient...
  10. DebJ14
    If there was a pharmaceutical to treat it, you better believe that it would be over diagnosed instead of under diagnosed. Ads on TV would send people to their doctors demanding the drug and so they would be tested at the first visit, not years after reporting symptoms. No money to be made off something that has a diet to control it, unless pharma gets into...
  11. DebJ14
    Hoping they did the right thing does not cut it. I would recommend that you find yourself a Board Certified Nutritionist who deals with Celiac patients all the time. My diagnosing doctor referred me to a local nutritionist who probably knows more about Celiac disease than most gastros. First, he ordered testing for nutritional deficiencies via Spectracell...
  12. DebJ14
    He is a Chiro and Board Certified Clinical Nutritionist, as many are. I was sent to him by the GI MD who said he was sorry to admit that MD's get no training in nutrition and it was out of his lane. You do not want a traditional dietician - find a nutritionist through the Doctor Search area on the acbn.org website.
  13. DebJ14
    I am in Texas. The doctor who ordered the nutritional testing is a board certified nutritionist. He specializes in those with gluten issues. He suggested the testing. I never heard of it before he mentioned it. And yes, I am feeling great. I used to always be sick, but since following his instructions regarding diet and supplementation I can honestly...
  14. DebJ14
    According to the Spectracell Test for Micronutrients that was administered after my diagnosis, I was low in B 12 and most everything. I was put on targeted high dose supplementation and when the test was repeated in 6 months, many deficiencies had resolved. After a year the test was repeated B-12, D and Antioxidant levels were the only ones that were still...
  15. DebJ14
    I just came across this post. My daughter in law has both DQ2 and DQ8 genes and my son (her husband) has one copy of the DQ2 gene Their oldest son was born full term weighing just under 5 pounds. At one he was 18 pounds and at 2 he was just 19 pounds. Doctors discussed failure to thrive. When both my son and daughter in law were diagonosed with Celiac...
  16. DebJ14
    I never cheat because within 30 minutes I have projectile vomiting and explosive diarrhea that lasts for hours. Then, I feel awful for days afterward. When I was diagnosed in 2007 my biggest issues were migraines, rashes, joint pain, ataxia, and severe constipation. The longer I have been off gluten, dairy and yeast, the worse the reaction if exposed to...
  17. DebJ14
  18. DebJ14
    Make sure that any biopsy is taken on the skin around the rash, not from the rash itself. Otherwise, it will be pointless. If the doctor starts to take a sample from the rash, pull your arm away quickly and go find another doctor.
  19. DebJ14
    Try a totally grain free diet and do not eat any commercially prepared gluten-free food. Even though they say they are gluten-free, they are still allowed to contain 20ppm. A gluten-free cookie here, a gluten-free pretzel there and a bowl of gluten-free Cereal and the gluten adds up fast. I found that going grain free was what finally allowed my gut and...
  20. DebJ14
    This hit home for me. Two of my first cousins died of Lymphoma in the same year. One was the son of my paternal aunt and the other was the son of my paternal uncle. Each of them was 50 years old at death. I was 54 when they died and had just been diagnosed with celiac disease few months before they died. I wondered if they had issues with gluten. One...
  21. DebJ14
    Then get yourself tested for food sensitivities and food allergies. Many, many people who have issues with gluten cannot consume dairy products or yeast. I got tested and am highly allergic to yeast and milk and have pretty much immediate reactions to them. However, there are also 23 other foods that I have a delayed reaction to. Once I cut all the offending...
  22. DebJ14
    I dealt with it early on by not allowing gluten into my home. Period, Full Stop. I find the lack of respect they are showing just awful. My father in law came to live with us and found himself in a gluten-free/CF home. Tough. In fact within weeks his health was restored and his asthma and psoraisis were gone. Suddenly he was telling everyone he knew about...
  23. DebJ14
    Sorry Chris, but you are in denial. Thinking that the gluten is not impacting your health is just wishful thinking. You appear to be a young guy in your picture. Take it from an old lady who was misdiagnosed until the age of 54, damage is being done to parts of your body you never dreamed of. When you present to GP's, gastroenterologists, dermatologists...
  24. DebJ14
    My gluten ataxia showed some improvement after the first year on a gluten-free diet, but it is still there 13 years later. I call it my tilt. I definitely tend to fall over to one side when walking. As a result, I always need someone walk on the curb side while out walking so that I do not tilt into the street. If I can't find a buddy to walk with me,...
  25. DebJ14
    Better check to see if insurance will pay for another endoscopy so soon after the first one. Also, why are you so hell bent on getting a diagnosis that you are willing to go through another gluten challenge? I would not knowingly eat any gluten because the result would be hours on hours of projectile vomiting and explosive diarrhea, following days of feeling...
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