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carecare

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Latest Celiac Disease News & Research:

Everything posted by carecare

  1. carecare
    How long have you been gluten free? Stupid doctors. Had my son's pediatrician just about deny my request for a celiac blood test because he was just having muscle pain and not digestive issues. She said "well, he's not having stomach pain or diarrhea so lets look at other things first." Luckily she agree to do the blood test and he was positive on...
  2. carecare
    I'm sorry you are feeling so ill. My advice and the advice of many here I am guessing would be to just give up gluten for at least 6 months and re-access your symptoms...and if need be at that time have a slice of gluten and see what happens. You will absolutely know if gluten is causing you some problems. Since you've been through all the testing there...
  3. carecare
    This is so interesting. When I called to find out if my colonoscopy and endoscopy would be covered by my insurance and to what extent they told me it depends on what they find with the endoscopy. What I got from the conversation is if they find something wrong (them knowing I'm going in to get checked for celiac) then my coverage was not going to be as...
  4. carecare
    I emailed my doctor as I noticed on the online portal that there was an option to do so. She replied within an hour which is awesome. I asked about checking B12 and Vitamin D. She said sure if I want to. Also said she'll do another round of bloodwork to check levels after my endoscopy and colonoscopy. So I think I'll just wait and have them check the...
  5. carecare
    Hmmm....what kind of celiac panel did they run. For instance...here are my results. If you see...I am negative. The 8 is my result for gliadin IgA, IgG 14...and anything under 20 is negative. All lab reports are different though and my sister's report looked quite a bit different. They should give you some "guidelines" in the report I would think though...
  6. carecare
    Thanks. I will be happy if it's the reason for my fatigue and headaches...because hopefully if it's corrected those will improve. I have not heard from my doctor yet...and wonder if they were just going to wait until I see them next monday for my endoscopy/colonoscopy? Wondering if I should call and inquire about it or just wait until monday and...
  7. carecare
    So I got my celiac panel back and it's negative. Geesh...seems like a high overall IgA serum but I suppose that's not unusual as it's in the "normal" range correct? Still wondering about my ferritin level of 9. I haven't heard from the dr at all...just saw my results online. I get my endoscopy and colonoscopy in one week. Will be happy to get it...
  8. carecare
    skylark...I was reading about ferritin levels and if I'm remembering correctly it stated that the other iron level readings can look normal because your body is taking iron from it's stores of iron which is the ferritin. It said it's why ferritin levels should be checked along with the other iron levels...because the regular iron tests won't necessarily...
  9. carecare
    Thanks. Yeah, I'm not putting to much into the genetics part of it. Her results were DQ2.2(HLA DQA1*0201:DQB1*0202)...so on the low end. It's just interesting. I did a ton of reading last night trying to figure out what exactly it meant and I think I figured it out. And I agree....so true...it doesn't matter when the SOB triggers!
  10. carecare
    So I've done some reading on ferritin levels. Hmmmm...still not sure what to think. I guess I'll see what the dr has to say. My sister got the results of her genetic testing from prometheus labs...and she was at the low risk category with what genes she had. So she wasn't sure what it all meant as she just got the results and was telling me them on...
  11. carecare
    So I went in to have my celiac panel run. The dr ran some other stuff too. My ferritin level is 9 and it says standard range is 8 - 252. Would I just be considered just on the low end of normal or do you think I would be considered pretty low? Also, if ferritin has to do with Iron...then why does it appear my iron levels are normal. IRON 128 50 - 17...
  12. carecare
    so very interesting...and glad I read this post. My daughter who is a freshman in college was home for Thanksgiving and developed a rash near her mouth on one side. She said it didn't feel like pimples but more of a rash. It sort of looked like tiny pimples but she said it was different. It's still there...and after reading about this condition you talked...
  13. carecare
    The more I read and ask him questions...I think he is suffering from Costochondritis. Hmmmm....
  14. carecare
    I agree.....he does need to see a physician. He is just the most super stubborn man against doctors ever. If I made that appointment...he wouldn't go. However, if I can somehow get enough information to convince him why he needs to go...then maybe just maybe he'll man up and take that visit to the dr. Thanks for the info. He also just can understand...
  15. carecare
    My husband has been gluten free for 2 yrs (self diagnosed gluten intolerant/celiac)...with the occasional glutening. The first 6 months gluten free were rough on him...as his D finally went away and his daily indigestion but then he started having what we believe were gall bladder attacks. Being the man he is he didn't go to the doctor so I started researching...
  16. carecare
    So the tTG was 41 correct when the normal range is (0 - 24). If that is how I am reading it then that would indicate celiac, I believe. Good luck and glad to hear you guys are seeing positive results on the diet. After going gluten free in the household because my son's blood test was on the positive side I realized I had problems with gluten as...
  17. carecare
    I get tested Dec. 12th....part of me really really hopes I am positive on the biopsy...just so that she'll have proof that she should indeed get tested. I go give blood on the first of December. I was gluten free for a month and a half (as we went to a gluten free household when my son's bloodwork was positive...and then decided to do the biopsies so we...
  18. carecare
    Wish my sister would believe that gluten could be the cause of her MS type symptoms. She's had episodes for the last 8 yrs...possibly longer. Has said she feels she has IBS. She's been to Mayo Clinic several times but never once did they test for celiac. She has large lesions on her brain but the spinal tap was negative for MS so they just say she has...
  19. carecare
    Are they safe to use? I have been miserable lately...and have to wait until Dec. 12 for my endoscopy before I can go gluten free again. This past week has been particularly bad. I was telling my husband I feel like my intestines are dry heaving...well, not dry but you know when you have that involuntary stomach movement when dry heaving or vomiting...but...
  20. carecare
    I bet it has to do with them just feeling crappy all the time. It really is becoming difficult to make sure they are eating enough gluten every day. Funny how sandwiches used to be their staple for lunches and now they turn their noses up at them. Only a few more weeks...only a few more weeks. We all are so looking forward to feeling healthy again!!!
  21. carecare
    Have they tested her for celiac? I do know that my husband's allergies much improved when going gluten free. He never got tested for celiac and is fine with it...he knows gluten bothered him. Anyway, he used to avoid bananas and tomatoes because of the stomach ache he'd get from them. Now gluten free he is able to eat those without any issues. He has...
  22. carecare
    I think it would be wise to find a second opinion. Was her doctor a specialist in celiac disease? Since you had the blood tests done and the biopsy why not just try a gluten free diet and see what comes of it. If in the mean time you find another doctor you can then tell them your results of the gluten free trial whether it's positive or not. We are...
  23. carecare
    So either the University of Chicago Celiac people are flakes or they just misinterpreted my question. I asked about my son's deamidated IGg being strong positive and if they would think that would indicate more of an sensitivity/intolerance and not celiac if his biopsy was negative (which hasn't been done yet). I know I've read research saying it's very...
  24. carecare
    So we went gluten free for almost 2 months. In that time my son who just turned 12 had a hardy appetite and seemed to really enjoy food while eating gluten free. Well, we are eating gluten until Dec. 16th when the biopsies are scheduled. He has become extremely picky and I am having a hard time getting him to eat much of the foods I am making. Even when...
  25. carecare
    I agree with everyone. I say the same thing....and tell family who say you just need time for your body to readjust to eating gluten again. I tell them what other food do they have to "readjust" to being able to eat. Interesting enough...a few years ago my husband went on a gluten free diet for 2-3 months. I was cooking all dinners gluten free but...
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