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October3

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Everything posted by October3

  1. October3
    Thanks very much for the links. Looks like maybe the next step is to request an EmA. I also need to find his path report and re-read it - can't remember if there was an increase in intraepithelial lymphocytes.
  2. October3
    Can you tell me where I might find this study? I would love to read it since it seems to be very relevent to our situation.
  3. October3
    A high tTG, especially one above 100, is highly suggestive of celiac but that by itself isn't enough to diagnose. It can also be elevated with any number of other autoimmune disorders, so the fact that you have multiple autoimmune disorders can either mean you have celiac and that is causing some of the others, or you have a propensity toward autoimmune...
  4. October3
    I'm answering for my 6 yr old son. His tTG was not super high, but was "moderately elevated" at 48. tTG went down to 21 or so without going gluten-free, and his biopsy was negative. No GI symptoms except malabsorption issues (anemia, etc). So as of this point we don't have a diagnosis.
  5. October3
    Crap! Almost certain my 6 yr old tTG positive/ negative scope kid is anemic again. His behavior is a disaster. He's just such a mess. I don't think we can make it to the 8 week mark. I was planning to take him for his blood tests next Saturday (a few days shy of 8 weeks) in the hopes of having results back by the next weekend so we could do a challenge...
  6. October3
    What a difference a week makes! For my older son, in the past week his bowel movements have become almost pristine. No gas, floaties, etc. Major change for him. Even more exciting is that his keratosis pilaris which has been on his face and fairly severe since age 1 is almost totally gone. It fluctuates some anyway but has never been this good. With...
  7. October3
    My son is in the same boat with a positive tTG and some symptoms (recurrent anemia, tooth enamel issues). His GI told me ahead of the scope that there was only a 10-15% likelihood of him being diagnosed with celiac on the scope. I, like you, could not figure out what he was basing his numbers on since the reading I did said a positive tTG was much more...
  8. October3
    Hmm. Interesting. I based our little experiment on a study I read that had people with full blown celiac with iron deficiency anemia take no supplements but change to a gluten free diet for 6 months. The vast majority of those people had resolved their anemia by 6 months. I was thinking because my son doesn't apparently have full blown celiac (no damage...
  9. October3
    I'm not feeling good about the direction things are going. My younger son has been really emotional for the past week or so - lots of meltdowns over little things. Could be all the changes with school ending, or coincidence, but I've also noticed a couple of bruises. Starting to think maybe he's anemic again. If that's the case do we assume gluten is...
  10. October3
    Good luck in your quest for answers too Cara. I'm thinking now what we will do is this: If my younger son's iron levels have improved since April we will do 8 weeks on gluten to see how he reacts and to check if that causes him to drop. If his iron levels are the same as April we will continue the gluten free diet for another 4 weeks and recheck. If...
  11. October3
    He's still gassy - I can't say there's been any significant change. I've been asking the dentist and docs about the tooth enamel for years now. The answers I'm given don't make any sense. They say it could be something that happened during formation of the teeth, but his teeth were fine until he was around 18 months which was also just on the tail end...
  12. October3
    We didn't test my older son in January. His blood levels have always been find but he has the KP and some chronic inflammation in his esophagus. Food intolerance testing did not show gluten as an issue for him but we thought as long as we were trialing my younger son we'd try him too. I hope, for everyone's sake, that my son's react to the gluten trial...
  13. October3
    So, we are about 5 weeks into an 8 week gluten free trial on my 2 boys. Neither of them had obvious GI symptoms, although the older one has a tendency for gassiness. But both have malabsorption symptoms (Keratosis Pilaris, tooth discoloration, anemia) which could be gluten related or could be something else. Neither of them seems at all different behaviorally...
  14. October3
    Thanks so much for the suggestions! My daughter (age 3) does not have ASD but does have a lot of sensory issues and your description of your kids sounds so much like her when she has a soy exposure. Just an entirely different kid. It's crazy! Funny you mention the swinging in a blaket because that was the only way to settle her down Thursday night after...
  15. October3
    Good suggestions on the yummy foods everyone! I think I was using detox and withdrawal interchangably as well. Yesterday and this morning were pretty good for both boys, although my husband made them waffles for breakfast in the glutened toaster - don't know if that would be enough to stave off withdrawal symptoms or not. Will see what the weekend...
  16. October3
    Interesting that you both mentioned the insane hunger. I thought when I did it a few years back that it was truly not getting enough calories. I tried to eat as much as I could but I actually lost 25 or 30 lbs in a few months and didn't have much to loose to begin with. But when I did it I was top 8 + corn free all at the same time so it was a big adjustment...
  17. October3
    Just wondering... I know with some other food intolerances the first week or so after elimination can be pretty terrible - symptoms can actually get worse for a few days while you detox. Should I be bracing myself for detox symptoms in my boys? My 6 yr old had a terrible night tonight (day 1 gluten-free) - major sugar cravings, snuck away and ate his...
  18. October3
    I called Crest and Colgate to inquire about whether their toothpastes are gluten-free, because I have seen gluten-free toothpaste advertised and hadn't previously considered that there could be gluten in toothpaste. Crest said their toothpaste has no gluten. Colgate said they don't add gluten to their products but can't guarentee they ingredients weren...
  19. October3
    Thanks! Will definitely check it out.
  20. October3
    Ok. Good point. I knew it must be more complicated that I was thinking. I was gluten free when nursing my baby with multiple food intolerances but somehow I am not recalling what I ate. I think I must have either just eaten whole foods and avoided anything with more than 1 ingredient. I don't think the boys are going to go for that strategy.
  21. October3
    We are starting my 2 boys gluten-free tomorrow (as well as everyone when eating at home). Just so I can be clear about the diet - with current labeling laws in the U.S. if it doesn't say "wheat" on the ingredient list and it also doesn't say spelt, barley, oats, or any other gluten containing grain I can feel confident that it does not have gluten in it...
  22. October3
    Wow! 6 months just seems like such a long time to try a diet that I'm not even sure will help at all. Obviously with my 6 yr old having an elevated tTG that points us more to gluten but with my 8 yr old there is no real reason to suspect gluten above all the other things that could be going on. Is the idea that some people have clear immediate reactions...
  23. October3
    How long do we need to be gluten free to know if gluten is an issue? For quick background because I haven't been here in awhile, my 6 yr old has an elevated tTG and chronic recurrent, but mild, anemia. Negative scope. My 8 yr old has frequent tummy aches, gassy and mucousy stools, and chronic inflammation in his esophagus. We're going to start gluten...
  24. October3
    Hope you don't mind me jumping on here with a related question - if the test says just tTG (but not specifying IgA or IgG)) which is it? Or is it both somehow?
  25. October3
    Thanks for the quick reply. Yes, I think going gluten-free is in order for him too. I just need to convince the rest of the family that it is necessary, and decide about whether waiting for to see the doc is necessary. I am just confused about why all of us have been negative on IgG testing for gluten if that ends up being a big issue for us. We've...
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