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tommysmommy

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

Everything posted by tommysmommy

  1. tommysmommy
    Yes, your symptoms give you every reason to consider celiac or even NCGS. And forget what others say, IMO gluten related disorders are the most misunderstood of all health issues and YES IT IS THAT BAD, for some it is way worse. Don't fear a diagnosis, it's good to have answers and even better to have an issue that doesn't require meds or treatments - it...
  2. tommysmommy
    Wow, gluten and dairy together - you are a brave one! Ledge talk down time. It sounds to me like you are experiencing something that not everyone goes thru but plenty do - it's called gluten withdrawal. Google it (you may also find it under wheat withdrawal). Wheat/gluten can act like an opiate and when you eliminate it, some people go thru a rough time ...
  3. tommysmommy
    Testing is not perfect, particularly with a young child. While a medical diagnosis is preferred, if your baby is obviously healthier on a gluten free diet.. make her gluten free (dairy and gluten problems often go hand in hand), it's only food. I suggest keeping a journal and note her reaction to foods, stool appearance & weight gain... I more than suspect...
  4. tommysmommy
    Well done being your own advocate, it sounds like you found your answer (or at least part of it). You are not alone in your frustration with the medical community (I suggest you check out gluten dude's blog online for others doctor horror stories - so that you know you are not facing this frustration alone). The good news is, gluten free is working! Given...
  5. tommysmommy
    Hey, this is a good thing! Yes, it is a hassle (especially at first when you are learning) but once you start feeling well again, it will all be worth it! There is a ton of great info on this site & on Facebook & twitter - those of us living the life tend to know better than our doctors! I would suggest new posts & pans (particularly the porous...
  6. tommysmommy
    Good for you, it sounds like you have your answer! Sadly, it is all too common for real problems to be overlooked by doctors (it's all in your head) & anxiety/depression to be "treated" instead of finding the root cause. If all of your health problems vanished with a gluten free diet, it is probable that celiac or gluten intolerance is the problem. Its...
  7. tommysmommy
    Another smart momma, sounds like you found your answer. Talk to your doctor - maybe they can try blood test before it's totally out of his system. You are not the first mom to try gluten free & see it work, then have to face the doctor (who missed the signs all along) telling you six more weeks on gluten! Follow your instincts, they are good ones.
  8. tommysmommy
    Amazing. Glad you figured it out. Some days I feel like life is a jigsaw puzzle, if you keep looking - eventually the pieces will fit.
  9. tommysmommy
    Sure sounds like you have reason to suspect gluten intolerance. Note in your daughter, there is evidence that celiac blood tests can produce false negatives in young children - and well, even if it's not celiac, gluten intolerance can show the same symptoms. Mucousy floating stools are a sign of a potential gluten problem (and definitely a malabsorbtion issue...
  10. tommysmommy
    I meant Chrohns not Crowns...autospell drives me nuts! PS, you may want to call the GI who will see you in Jan, tell them you have celiac in the family & just went GO - ask them to order the blood work in advance of your appointment - they may not make you wait.
  11. tommysmommy
    Wow, yet another doctor giving bad advice, it seems to be an epidemic! If celiac runs in your family & you are having so many possible symptoms - there is every reason to do the test (it's like a $300 blood test for godsake, not a big deal). Telling you to try eating gluten free first is wrong. If you so have celiac, it can easily take a year to start...
  12. tommysmommy
    Add... Ice Pops (most) Goldfish Puffs Cheetos Fritos most potato chips (not pringles) Tostitos (not all tortilla chips are ok) Hershey Bars M&ms Reeses (except seasonal shapes)
  13. tommysmommy
    Sure sounds like you are going through gluten withdrawl, which is a pretty good sign gluten is a problem for you. Google gluten withdrawl & you'll see it is not uncommon - for some of us gluten/wheat has an opiate like affect on the brain and detoxing can cause your body to freak out - the good news is it should only last a few days, week tops. It sounds...
  14. tommysmommy
    It does such at first but I promise it will get easier. Eating out and convenience are a problem, but you'll figure it out and there is an active celiac community (here, fb, twitter) willing to help. We all get it. It's almost frightening to realize everything you always ate is now bad for you. Guess what, eating so much of that stuff is bad for everyone...
  15. tommysmommy
    My 7yr son was the same - got much better on gluten-free diet but 6 months later was back to stomach pain, we eliminated most dairy & the pain & other issues (he was also having constipation & often had burning red ears) went away. We arent crazy strict as we are with gluten- he can tolerate a little now (8 months later) such as an occassional...
  16. tommysmommy
    Going out for breakfast is a rarity but believe it or not, I go to Chick-fil-A... order a bacon/egg platter with hash browns & yogurt with strawberries (no granola) & if u ask them to change gloves, it is a safe bet. Note they don't cook anything on their grill except eggs, the hash browns are cooked in a fryer that is only shared with fries (which...
  17. tommysmommy
    A celiac test is complicated and can only be done by certain labs with the expertise to run the panel accurately. I'd return the home test and go through your doctor. Also note, a blood test alone is rarely enough for a medical diagnosis, the second step is endoscopy.
  18. tommysmommy
    I would seek a second opinion asap. The decision to do a gluten challenge at this point so they can retest sounds dangerous to me. Whether celiac or gluten - intolerance, which won't show up on any test - it sure sounds like you figured out what was hurting him (and if the gluten challenge is making him sick again, that only supports the notion). A medical...
  19. tommysmommy
    My son had a similar situation at a 1 1/23rd old with constant vomiting, profuse diarrhea, rapid weight loss - for us it came out of right field because he had not had any indications of a problem before that - in and out of the hospital - doctors insisted it was a virus. Long story short, when he went gluten, dairy & soy free - his issues resolved...
  20. tommysmommy
    I highly recommend you find a new doctor! I had many doctors refuse to test until I took my son off of gluten and he improved. If celiac is the issue (and it sure sounds likely) then living gluten-free will give her new life!
  21. tommysmommy
    So glad you went to see your doctor. unfortunately, doctors dont always comprehend all the connections - but those of us living with it do! All say you should be eating gluten for an accurate test but you may be within the window still (why cant they just do the bloodwork today, its like a $350 test... btw - there may be a connection with celiac and eating...
  22. tommysmommy
    You have every reason to suspect celiac disease - all of your lifelong symptoms point to it as a serious possibility - and your fast improvement gluten free certainly supports it. Please dont wait for your followup appointment, call your doctors office immediately, explain the improvement and ask for them to order a celiac blood panel right away...if you...
  23. tommysmommy
    Dairy is a common intolerance with celiac, particularly if ij healing process
  24. tommysmommy
    Please reconsider eliminating the breast milk - even if only for a day - just to see. Breast milk is very different than other milks but that doesnt mean that as her body heals it isnt finding it difficult to digest (its a common villi issue) young childen tend to react quickly...worth trying for a day or two - if symptoms persist - then uve ruled out a cause...
  25. tommysmommy
    I dont like the word virus.... i heard that for 2 months as my little guy got sicker & sicker - our babies shouldnt be struggling if the fix is food. First, if the blood test was positive I wouldnt worry too much about the negative biopsy - it just means her intestines hadnt suffered damage yet - I'd consider her celiac. Are you sure you are comoletely...
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