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w919oct

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Latest Celiac Disease News & Research:

Everything posted by w919oct

  1. w919oct
    Leaning how to bake gluten free is an important exercise for all Celiac children, so I believe this is an excellent opportunity for him to learn how to accommodate himself in such an environment. Additionally, you should recognize this is a superb opportunity for the OTHER students to learn about food intolerance and allergies. Just remember it's probably...
  2. w919oct
    I most definitely will! For now, I will tell you both physicians we are currently seeing did tell me where their heads are at the moment (after much prodding from me; I am very good and getting doctors to share their hunches with me with the full understanding it is subject to change). Both believe they are looking at possible Crohns with gluten intolerance...
  3. w919oct
    You can tell that woman at the office that while my son had a cornucopia of symptoms related to Celiac since birth, the "kicker" that sent us into a frenzy was that he had started to show signs of diabetes -- wetting himself, excessive thirst, malabsorption, diabetic-type "zone outs," etc. Celiac causes diabetic symptoms, in addition to all of the others...
  4. w919oct
    Hi. My 8 year old son has been gluten-free for 4 years, my husband just went gluten free a year ago, and my daughter and I are what you call "low gluten." So, I feel your pain, but will enthusiastically tell you that you that we've been able to get through it, and I'm absolutely sure you can as well. First rule -- You need to experiment with every single...
  5. w919oct
    Oh gosh, I was so you 4 years ago. Your kid is sick, and no one is disagreeing with you but no one is giving you any answers except "It's not this nor that, but keep him off gluten and see how he does" and you grow so resentful towards the entire medical community because they don't treat this illness with the same verve as other food-related illnesses. After...
  6. w919oct
    OMG we must have the same doctor!!! I've been down the same path as you with the potential Cystic Fibrosis and Crohns. In fact, his Cystic Fibrosis test was almost borderline positive, but he has no issues with congestion so they concluded the issue was with the test results. Interesting to note to all -- I did ask two of the gastros we saw if we were...
  7. w919oct
    I just got home from work and am teary-eyed from reading through all of your responses. Sometimes it is just such a relief to hear that other parents have struggled through the same heart wrenching decision as we are facing. Bless you all for sharing your stories. Yes, my pediatrician is amazing, and the three gastros we've visited all comment how impressed...
  8. w919oct
    Looking for input from parents who've "been there." Four years ago, my son came down with what I thought was a virus that resulted in a 6 lb weight loss over only two weeks time. Because of the urgency of the situation, I wasn't willing to wait for the test results to come back before taking action and quickly reacted on our pediatrician's suspicion that...
  9. w919oct
  10. w919oct
    That is exactly what has been SO confusing for us. My son is DEFINITELY AUTOIMMUNE because he has all the classic symptoms (unexplained fevers, extended illnesses, chronic anemia, abnormal blood counts) PLUS both parents are autoimmune (chronic hepatitis and hashimotos). My son is also definitely gluten intolerant. BUT NO ONE IS REALLY SURE WHETHER HIS...
  11. w919oct
  12. w919oct
    My newly diagnosed gluten intolerant 4 year old has suffered from unexplained low-grade fevers his entire life. On Saturday, he was mistakenly exposed to gluten and, in addition to the typical rash and intestinal symptoms, he is also running another low-grade fever. Is this just a coincidence or is a fever after gluten exposure normal?
  13. w919oct
    I feel for you folks who have infants and young children, and no official diagnoses except a gut instinct. The reason my physicians were able to accept my own gut instinct is because there was a REMARKABLE decline in my son's energy level, temperment, and change in his body physique (he was once a muscular boy in the 90% percentile weight bracket -- now...
  14. w919oct
    To the individual who asked about the itchy rash -- the rash on my son's face resembles acne (which he still has because I tested my wheat-shampoo theory last week), while the one on his torso (which is now gone since going gluten free) looked like chicken pox. I just wanted to tell you that I had my final conversation with my gastro and both he and...
  15. w919oct
    The way I see it, if someone with celiac disease doesn't eat gluten, they do not have a disease (assuming all their symptoms clear up), they are then perfectly healthy. I'm not sure I buy that. As a lifelong sufferer of an autoimmune disease myself, I was told I ALWAYS had the disease even if I wasn't experiencing any symptoms. In my case, I was diagnosed...
  16. w919oct
    One other thing I forgot to mention -- My son gets a raised red rash on his abdomen and his cheeks after eating gluten as well. Once he went off gluten, we noticed that the abdomen rash went away, buy the facial rash did not. Sure enough, we checked his shampoo bottle and -- YOU GUESSED IT -- it contains wheat!
  17. w919oct
    WOW! THANK YOU ALL SO MUCH FOR SHARING YOUR EXPERIENCES!!! As many of you have indicated, I feel the pediatric gastro community is test-happy, and like many other medical specialties, has stopped practicing patient-focused medicine, relying more on tests than real symptoms. When did doctors actually stop LISTENING to us??? My gut feeling is that he...
  18. w919oct
    My 4-year old has battled chronic constipation (he cannot have a bowel movement without medication due to large, oily, bulky stools), extended illnesses (especially in the winter), very high platelet and white blood cell counts, chronic anemia, daily episodes of severe hypoglycemia, and excessive thirst his entire life. His pediatrician always suspected...
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