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cmc811

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Everything posted by cmc811

  1. cmc811
    DGP in and negative. DGP-IgA Result 8 Negative <20 DGP-IgG Result 4 Negative <20 Hmmm,,,,,now not sure what to do.
  2. cmc811
    So DGP result in and negative. DGP-IgA - Result 8 - Negative is <20 DGP-IgG - Result 4 - Negative is <20 Earlier in the year he had a negative tTg-IgA and EMA, so at this time it seems unlikely we're dealing with Celiac Disease. He did have an elevated ESR and he is severely constipated.....not sure what to do next. Doctors just seem to...
  3. cmc811
    I was wondering about anemia too...his hemocrit and hemoglobin are normal but his red blood cell count is low. Basically I've been told that isn't significant, but my blood work looked like that too and over time my other number fells into the anemia range. Was diagnosed with Celiac, went gluten free and for the first time my numbers are all normal after...
  4. cmc811
    My 6 yr old is still a mystery, but today we found out that his ESR came back high. Normal range is <10 and his was 38. Dr said they typically don't get too excited about it unless it's over 60 but it could be a piece to the puzzle. So far his Celiac tests have revealed nothing but we're waiting on the DGP still. tTg-IgA = <1 (range is <...
  5. cmc811
    For Vitamin D3 I like Rainbow Light Berry D-Licious Gummies. They are 2500 IUs and are free of gluten, soy and dairy.
  6. cmc811
    i've always had trouble with vitamins but I can take 1 kind without issue: Garden of Law Raw One for Women. The vitamins are from actual food sources, rather than synthetic like Centrum. The same brand also makes digestive enzymes and probiotics, which would be good for you to take as well.
  7. cmc811
    Yeah, ideally I want a diagnosis for him, but I understand that he may have to suffer for years before a test finally comes up positive and I'm just not willing to let that happen. We'll see how the DGP tests turn out and go from there I guess!
  8. cmc811
    Thanks! Follow up question: if this test is negative, along with the tTg-IgA and EMA he has already had done (IgA was sufficient) would you do the biopsy anyway? GI said that would be the next step but I just don't know if it is worth doing. I know if I just trial a gluten-free diet and he's better I'll never really have a diagnosis for him but at the...
  9. cmc811
    He eats breakfast at daycare and almost everyday it is something with gluten in it (pancakes, toast, cereal, etc). I also send prepackaged gluten containing items like crackers a few times a week in his lunch. On the weekends he may not have any gluten at all though if we are home all weekend. I say small amounts mostly to be conservative because I don...
  10. cmc811
    Just want to clarify that he has NOT been gluten free at any point. I've seen the everyday consumption for 8 weeks recommendation but that was for someone who was completely gluten-free. Since my son has had gluten on an almost daily basis, just in small amounts, would we need to wait that long? I've been making sure he a good serving of gluten every day...
  11. cmc811
    We're going through the same thing with our 6 yr old. Constant stomach pain but negative tests so far. He didn't have the DGP ordered initially so we are doing that in the next few days. What tests were included in the panel? Even if your little one isn't IGA deficient it is wise to get the IgG tests as well because some people only show positive on those...
  12. cmc811
    I have FINALLY found a doctor that was willing to order this test for my 6 yr old son after the TTG-IgA and EMA were negative. I have Celiac and he has symptoms so this is a test I've been trying to get ordered for over a year.... Anyway, since my diagnosis in March we are a gluten free household. My 6 yr old does get a bit of gluten everyday outside...
  13. cmc811
    WOW, that's expensive. Can you have it done at an ambulatory surgery center instead of a hospital? My fees were $1825.75 which included everything - facility fee, physician fee and pathology fee.
  14. cmc811
    Yes, they do have a Child Life department. I called today to get more details and they said we could even come in the day before so he could see everything in advance.
  15. cmc811
    I had an appt with a dermatologist for today but his rash is almost gone now, so I canceled it.
  16. cmc811
    The pediatrician wasn't helpful at all. I had to demand the tTg IgA be done but she wouldn't order anything further since that was negative. I think we're going to do the endoscopy. My only hesitation is that our son is extremely afraid of anything medical. Getting his blood drawn for the tests we've had done so far was a nightmare. I can't even imagine...
  17. cmc811
    The small patch he has on his hips (that is itchy) look just like what you posted, but the rash that he has on his bum (isn't itchy) doesn't look like that at all. I'm pretty sure my son has a few different rashes at the same time. He has had skin issues his whole life but never severe enough to try and treat.
  18. cmc811
    Thanks for your input. I completely forgot that Joe was only positive on the IGG, which they didn't run on our son. I was leaning towards doing the endoscopy, but I just want to make sure I'm not putting him through something unnecessary just because I'm so desparate for answers.
  19. cmc811
    I've had a lot of posts so I'll try to summarize where we're currently at with our 5 yr old son..... Symptoms: *frequent belly ache *waves of nausea *constipation if not using Miralax *small - only 39 lbs and 44 inches. Weight is around 15th percentile, height at 45th. *Alopecia Areata *Behavior issues - crazy off the wall tantrums triggered by...
  20. cmc811
    I definitely need to get more assertive. So, I would like to minimize any more blood draws so what should I ask for? *Free T4 *Free T3 *Thyroid Antibodies What else? He has had CBC, CMP, TSH, tTg, EMA, CRP all recently. Would there be value in checking for other deficiencies (vit d, vit b12, magnesium, etc)? Also, should I have the TSH done...
  21. cmc811
    Can one of you be my son's doctor??? Seriously, though, I just don't know how to get these doctors to listen. He doesn't fit the "classic" presentation of any one thing but like I have tried to point out, it might just be because he has more than one thing going on! I'm hoping the GI will do the scope now instead of waiting a few months like he originally...
  22. cmc811
    They didn't test anything but TSH and since that was "normal" they don't want to order anything else to complete the thyroid panel, yet they don't have an explanation for his symptoms. I'm so frustrated because I know his symptoms are very general and could be due to a variety of different things, but that doesn't make them any less real for my son to deal...
  23. cmc811
    How you explained it is how I understood it but everyone is saying his numbers are fine so I don't know that I can get a pediatric endo to see him He has all the symptoms you listed EXCEPT he isn't gaining weight at all. At almost 6 his is only 39 lbs.
  24. cmc811
    We took our son to a pediatric GI doctor for celiac-like symptoms but all this tests were negative. We asked about the gene test but he said that based on the fact that I have celiac and my husband's heritage, he would guess that both our kids have the gene. He said that certainly doesn't mean they will have Celiac but he thought the genetic test would be...
  25. cmc811
    Why would the lab range be so high? The blood was drawn at a major hospital in the pediatric speciality dept.
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