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October3

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Everything posted by October3

  1. October3
    Weight and height are good. He is an active child, but it doesn't seem to get him in trouble or affect his social skills or schooling like you might see with true ADHD. He does have some trouble settling down at night though. No other allergies that we know of but he did seem to have an intolerance to dairy and probably something else while breastfeeding...
  2. October3
    I responded but it didn't show up so I'll post again - if it shows up later please excuse the repetition... Until you posted this I had forgotten that his scope (in January) did show a mild inflammation in the stomach. Apparently the GI wasn't concerned because he didn't even mention it to me but I saw it on the report. I wonder if he has an ulcer growing...
  3. October3
    Reading this reminded me that his scope did show some mild inflammation in the stomach. That was the only finding and the GI didn't even mention it but I saw it on the report.
  4. October3
    From my memory, it seems like he would occassionally get stomach aches before we eliminated gluten, but so rarely that I didn't consider it a likely symptom. So when we eliminated gluten for 2 months (I realize maybe that wasn't long enough to reach a full baseline, but I was thinking it should be long enough to see if he felt any better off gluten) we didn...
  5. October3
    My 7 yr old who is currently still in the diagnosis stage has no obvious daily symptoms. For the most part he is a healthy looking, energetic, happy kid who is growing and developing well. Over the past year though he has developed the tendency to complain of stomach aches it seems whenever he is under stress - physical or emotional. For example, today...
  6. October3
    Thanks for the tip about the Flintstones. If we go gluten free it's good to know which brands are okay.
  7. October3
    Roda, Thanks for sharing your story. It helps to hear other parents of similar aged kids and the way they have reached the decision to be gluten-free. It is such a tricky disease in that there are so many different ways it can manifest. On the point of behavior, I don't think my son's behavior is affected by gluten at all. His meltdowns, headaches,...
  8. October3
    Good point. We do give the Floradix mixed in orange juice and it already has Vitamin C in it as well, but perhaps increasing the vitamin C is part of the key. Thanks.
  9. October3
    Sigh.... The saga continues. Now really sure what the next step is from here. Let's see if I can summarize the past year - My son got really worn down last winter. Took him to doc, blood test showed anemia - not a huge surprise because he has been anemic off and on his whole life. Doc said go to GI again (previously worked up for recurrent anemia at...
  10. October3
    My 7-yr old falls into the "potential celiac" category. Positive tTG, negative scope, no symptoms with gluten eliminationand then re-introduction but chronic iron deficiency anemia with no other cause identified. We've been experimenting with supplements trying to get him feeling better and his iron levels built up. About 3 weeks ago we switched...
  11. October3
    I'm inclined to go this route as well. Seems the most financial friendly option as well as the option with the best chance at showing conclusive results. If his tTG goes up on gluten and down off gluten then that's pretty convicing evidence gluten is causing things to happen that we don't want. I just don't really understand why it went down with no dietary...
  12. October3
    Thanks for all the info. I really appreciate your perspective. Just curious if you have trialled the foods that came back positive to be sure you really react? My experience with the Genova food allergy testing was that I came back positive to lots of foods and I eliminated them all for a few months and then reintroduced but found that very few caused...
  13. October3
    We don't have a family history of celiac, but like you there are a variety of autoimmune issues. If you go for the endoscopy and it shows a + for celiac then you have your answer. For me the drama of the scope prep was worth knowing for sure if he had full blown celiac. The hard part is when symptoms are mild and the scope is negative - what do you...
  14. October3
    I didn't get a chance to read your other post yet as I'm running out the door, but to answer your question here - my son (also 6) had a tTG that was considered moderately elevated (48.8 with a normal range of 0-19.9). The GI we were working with (who, as an aside, I think knows his stuff - we go to one of the top Children's Hospitals in the country and he...
  15. October3
    Quick backstory since I post here so infrequently - my 6 yr old son has had several episodes of mild iron deficiency anemia in his lifetime. A workup last winter revealed he had a tTG of 48.8 (range of normal 0-19.9) so that is "moderately elevated". His scope was totally normal so the GI said to watch him, bring him back in if he develops any symptoms...
  16. October3
    Sounds a lot like our situation. My son has had recurrent anemia - but mild and able to resolve on a multivit with iron - his entire life. His iron stores never seem to build up though. When he was a baby and toddler he had constant diarrhea but that eventually went away. Now his GI tract is fine it seems. We have no other symptom that we can point to...
  17. October3
    I'm newer to the celiac side of things, but from years of chasing down food intolerances I can say definitively you can develop food intolerances at any time even if you are not celiac. The theory with food intolerances is that damage to the gut allows larger particles of food to pass through (leaky gut) and your body doesn't like this. Leaky gut is very...
  18. October3
    I have been on and off gluten 2 or 3 different times and not noticed any difference. I have some mild IBS-type symptoms and also episodic joint pain and I think for me milk and possibly soy is a bigger trigger than gluten. My son, who has moderately elevated tTG with negative scope, had no obvious change when we eliminated gluten for 2 months and then...
  19. October3
    Ask for EMLA cream. If you put it on his arm with a bandage on it for 30 min before the blood draw he shouldn't feel anything (its a numbing agent). I usually put it on both arms so the phlebotomist can make the decision which to use. If you tell him the cream will make it not hurt hopefully he'll be more willing. Then just cross your fingers that it...
  20. October3
    Thanks. I'll check in to it. Another question to throw out there for anyone who has had hypoglycemic symptoms. Have you checked your blood sugar and has it tested low, or have you been symptomatic but sugar levels test in a normal range? I'm considering getting a home monitor and checking my son when he has melt downs but don't want to do it and have...
  21. October3
    I came here to ask this same question and was glad to see this thread already going, and the link to the Chicago center as we are also midwest so Chicago would be easier. But when I was looking through the Chicago site I was disappointed to see that they consider a positive biopsy to be the only way to diagnose Celiac and our situation is we already have...
  22. October3
    Yup. That's how I feel. And if it were me I wouldn't feel so bad about it, but forcing my kid to adhere to a diet when he doesn't seem to feel any better either way (he doesn't realy feel bad at all) and the blood work seems so random just is hard to be motivated for.
  23. October3
    Well, i have no helpful words of wisdom but we are in the same boat. My son's levels went from 48 (0-19.9 is normal) to 22 with no change in diet at all. Then down to 14 on an 8 week gluten-free diet. So did the drop from 22 to the normal range at 14 have to do with diet, or was it dropping anyway and the diet had nothing to do with it? Interesting about...
  24. October3
    Thanks for sharing your story. I always learn something when I hear what others have been through. Its interesting you mention having a nervous stomach early in the morning before he even ate. My son says he often wakes up with a stomach ache or feels like he's going to throw up first thing in the morning. He is often hypoglycemic acting first thing in...
  25. October3
    We're starting almost from the begining with my son (6) who (sorry to be redundant but I don't post real often so I feel like I should give our story for thost who don't know) has moderately elevated tTG, negative biopsy (totally normal - no indication of anything despite many biopsies), and no significant change on an 8 week gluten-free diet. He has no...
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