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balmerhon

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Everything posted by balmerhon

  1. balmerhon
    My 3 yo son's blood work came back negative. He had an endoscopic biopsy and that also came back negative for celiac. BUT they did find allergy cells (eosinophilic colitis). This is despite his RAST tests coming back negative as well. We did 2 weeks of gluten free with no change in his symptoms (diarrhea). This was prior to the endoscopy. We're now doing...
  2. balmerhon
    Did he take biopsies? That's the only way to 'see' if there is celiac damage - under a microscope! Even then, false positives are common in the under 5s. If you look at some of my previous posts, you'll see my son had negative blood work and biopsies. But they did find allergy cells. So right now we're looking at allergies. But if nothing pans out...
  3. balmerhon
    Thanks for your input, JoAnn. I will certainly bear that in mind as we continue to progress through the diagnostic phase. I'm told that if it's a milk allergy, he should show improvement within 3 weeks. We're going to try that and if there is no improvement, we may try gluten free again down the road - and stick to it for longer than 2 weeks! I should...
  4. balmerhon
    FWIW, I spoke to the dept about false negatives in young children. They agree that this is certainly a problem. That said, this is Dr Fasano's dept. If any place is going to get it right, it's going to be them. Of course, that doesn't rule out intolerance or an allergy to gluten. But at this stage, I do have to put my trust in one of the best depts in the...
  5. balmerhon
    I am aware that false negatives are a problem for young children. How is an elimination diet more difficult than going gluten and/or dairy free? We've been advised to go milk free. Fortunately, many of the foods DS eats are already milk free. We seem to be lucky in that a lot of the breads/crackers he likes don't have it. DS does not LOVE any food except...
  6. balmerhon
    Well, according to the endoscopy, he does not have celiac. He has allergy cells present though. So now we have to start food elimination while we wait to see the allergist. JoAnn, we have AI in my family, too. My Dad died from complications due to scleroderma. We've got other diseases as well. So even though we were told no celiac, I'm still very aware...
  7. balmerhon
    Don't get me wrong. I totally agree the pharm industry is out to get every cent they can. One thing that totally blew my mind upon my return to the US this year was all the pharmaceutical advertisements on TV. Frankly, they should be illegal. That said, I still wholeheartedly believe that for some, medication is necessary and the research to make it hugely...
  8. balmerhon
    I just saw this thread after reading the article in SA. I cannot BELIEVE any of you would object to a pill that would help with celiac. My son has not been diagnosed (we get results of his biopsies tomorrow - all blood tests are negative). If he has it and there were a pill that could help in any way, I would be SO grateful. Why? Well first of all, because...
  9. balmerhon
    My son tested negative twice for celiac (he's now 3 and a bit). He just had an upper and lower endoscopy this past Tuesday. We'll have the pathology results in early August. DS is average on height but skinny as a rail (he can wear 18 month size shorts/pants). He weighs 25lbs. He has very soft poop but is prone to diarrhea. He has a bit of reflux but no...
  10. balmerhon
    Sorry I'm late to replying here. The clear diet/miralax is standard here as far as I know. They were also checking for more than celiac, so that might have something to do with it. Just in case anyone else ever has this problem... When I talked to the doc, they had us try magnesium citrate, which also was refused (my kid is nothing if not consistent...
  11. balmerhon
    And his endoscopy is Tuesday! We started him on it today, along with the clear diet and he's pretty much refused it. He was supposed to have 3 doses at 4, 6 and 8 and I've barely got one in him. I'm going to call the doc tomorrow but thought I'd see if anyone else has any ideas. DS only drinks milk and water usually. I tried the Miralax with juice and...
  12. balmerhon
    OK, just had the red food thing confirmed. Can anyone else tell me what else to expect?!
  13. balmerhon
    My DS (3 years old) is going to have an upper and lower endoscopy on 21 July at Univ of Maryland. Starting 2 days before, we have to put him on a clear diet. They didn't tell me anything more than that, but someone told me they thought that no red foods (jell-o, popsicles) were allowed. Anyone heard that? What did you feed your child? He'll also...
  14. balmerhon
    It's ok. Yes, he's been tested for CF and it was negative.
  15. balmerhon
    To recap quickly, my DS was seen at the Univ of Maryland for persistent diarrhea and failure to thrive. He is 3 years 3 months old and weighs 25lbs. His height is average and his BMI off the chart low. Aside from being skinny with diarrhea, he is happy and energetic. No tummy pain, etc. All his tests came back negative for celiac. He has not had...
  16. balmerhon
    My DS has NOT been diagnosed with Celiac or anything else. I am requesting copies of all his lab tests to see exactly what they tested for, but he was seen at Univ of Maryland, who are well-regarded for Celiac treatment, so for now we are trusting that they have tested properly. We see the specialist on July 6, at which point we will have a TON of questions...
  17. balmerhon
    Thanks to everyone who has responded to my other posts about my son. He has tested negative for Celiac but in order to try to improve his diarrhea, we decided to try a gluten free diet for a few weeks to see if things got any better. Right now, I can only say his poop is worse. He's eating well and seems his usual happy, energetic self. But man...
  18. balmerhon
    Thanks for that info. I'm going to take notes from this thread for when we finally do see the doctor. Meanwhile, we are on day 6 of a gluten free diet, he's eating well, but if anything, the poop is worse. Is this normal?! Maybe I'll start a separate thread for this as it is worrying me.
  19. balmerhon
    I'm assuming (and will confirm once I have the paperwork) that they have tested for this. I know they tested for blood in his stool. No, he hasn't. I'll look into this more. No cramps, but you never know. Thanks! Good luck. Let me know how you do. I'm going to give it two weeks and evaluate from there. BTW, can I ask how you managed to...
  20. balmerhon
    I'm waiting for the letter from my son's consultant, but I spoke to his nurse today and everything they tested for has come back negative. DS is at University of Maryland who are great with Celiac and other digestive issues. So I know they are doing the right tests (I hope to have a copy of everything in hand soon). We don't have an appt until July ...
  21. balmerhon
    Thanks so much for your input. It's interesting to know that Dr Fasano didn't pursue it further. We've decided to try gluten-free for a couple of weeks to see what happens. Unfortunately, I'm already in sticker shock. We went to Whole Foods in Annapolis and I spent $40 for not a lot. On top of that he's not loving the food so far. I don't know...
  22. balmerhon
    He has not had a biopsy. Would they still do that even if the blood tests are negative? I know that blood tests are not always accurate, but I'm reluctant to have him go through a biopsy when his symptoms aren't that severe. To be honest, they are more troublesome to me then they are to him at this stage though I certainly appreciate that if he has undiagnosed...
  23. balmerhon
    I posted about a week ago about my son who was tested for Celiac disease due to poor weight gain and persistent diarrhea. Aside from that, he is fine. He eats (though not loads), he's happy, he's energetic, he sleeps well. He has no gas, bloating, tummy pain or any other symptom of allergy or intolerance. I have IBS and we do have autoimmune problems...
  24. balmerhon
    He's had only one ear infection in his life. This was in October of 2008. He'd had D before then and it started up again after the antibiotics wore off. That said, his poop was still soft when on the antibiotics, just not as soft as before! So far none of the medical professionals we've seen think he has milk issues - though I'm aware the symptoms can vary...
  25. balmerhon
    This is a bit of a long story, but I'll keep it as short as I can. My DS plateaued on weight around 1 yo. He had always been 'below average' but not hugely so. For about 4-6 months he gained very little. At the time, we were living in the UK where he was born. We were referred to a pediatrician who ran celiac, cystic fibrosis, and absorption tests. All...
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