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October3

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Everything posted by October3

  1. October3
    All of my posts up to this point have been about my 6 yr old who had a positive tTG but negative biopsy. Now as we're preparing to start him on a trial gluten-free diet I'm debating whether to have my older son also do it. Today I think I've decided we need to and I'm starting to think maybe this has been his issue all along. Here is his back-story. ...
  2. October3
    I finally got the report from the scope. It doesn't give too many details. Basically says duodenum was normal, stomach was normal, esophagus was normal, terminal ileum, descending colon, signmoid colon, cecum, ascending colon, hepatic flexure, and anus all normal. The only things that were a commented on more than that were that the colonoscopy was...
  3. October3
    Thanks for the tips. Is there a list somewhere of what ingredients in personal care items generally have gluten?
  4. October3
    With the help of a lot of really smart ladies on various allergy forums. And it helped that I was nursing my daughter who reacted very violently to things in my milk so it was easier (though still a process) to figure out her intolerances and once I eliminated those I discovered that I felt better. As it turns out (I didn't know this before) babies often...
  5. October3
    We use Mela leuca products primarily. They list what is gluten free on their website and lots of things are (like the laundry detergent) but the kids shampoo, body wash, toothpaste, and the soap we use is not. Looking through their list is a bit daunting because there are things I've never thought of - like dishwashing detergent and mouthwash. And...
  6. October3
    Thanks Ravenwood..., Just seems like even to do a trial is going to be pretty expensive (replacing cookware, personal care items, etc etc). I was hoping there were some things that could slide until we know for sure.
  7. October3
    Yup, I can recall feeling that sense that I would never figure it out. One thing I will say though is that with soy or pretty much any other food (besides dairy and gluten) you should notice improvements within a week. It may take a little longer to get the rest of the way out of your system, and some things aren't directly symptoms of the food but rather...
  8. October3
    My daughter, my oldest son, my mom, and I have all had the ELISA test through Genova Diagnostics. I have found the results to be only moderately helpful. In all cases we eliminated all the foods for a few months and then reintroduced. My daughters reaction to soy was a 3+ which is the most severe reaction possible and that is accurate, but we already knew...
  9. October3
    Well, I can tell you my experience. My symptoms to dairy (I'm pretty sure, as I'm doing a dairy trial now and these are what have come back) are joint pain, anxiety, and fatigue (like almost falling asleep in the early afternoon), along with GI symptoms. My daughter's dairy symptoms are GI and congestion/ ear infections. Her soy symptoms are mostly behavioral...
  10. October3
    One time that my daughter was having general anesthetic I fed her a big meal right before the cut off time and got reprimanded by the anesthesiologist - I guess they wanted her to have a light breakfast only (her cut off was 8am or something like that for a 2pm procedure). I wouldn't wake him. Just give him a late dinner or bedtime snack. Let him know...
  11. October3
    We're getting ready to start a trial gluten-free diet for my son, who was moderately elevated on tTG but with a normal biopsy. He has no obvious celiac disease symptoms but a few things I think maybe might be symptoms that we just don't realize. What I'm wondering is what do we absolutely need to do to be sure our results tell us one way or the other? ...
  12. October3
    I've wondered the same thing about the TTG. My son's doctor only ordered the TTG, and then when I called and asked for a full celiac panel they said sure and sent me the lab req and the only thing on it is the TTG again. So they must think highly of that test - LOL. I've reasoned though, that the IGA which is basically a test to make sure the immune...
  13. October3
    Well, I can tell you our experience fwiw. My son, 6, just went through the endoscopy. He had a colonoscopy as well and for us the worst part was the prep for the colonoscopy which it sounds like you get to avoid. As for the actual day of the scope, our arrival time was 7am so we didn't have to wait around and be hungry. We had the scope done at a children...
  14. October3
    Right. I thought about that, too. I'm hoping that if gluten is really an issue for him something will be obvious with a behavior change. I just have a hard time believing that his only symptom could be malabsorption. But like you said, the damage might not be very bad at this point too. I am still pretty confident the GI's who did the scope knew what...
  15. October3
    He said he doesn't have enough evidence to give a diagnosis of celiac at this point, and he discouraged doing the diet. When I talked about doing a trial he couteroffered doing just a minimization of gluten but not a strict 100% gluten free diet. I think he was thinking in terms of prevention from developing in the future. I haven't told him my full plan...
  16. October3
    So I had a long chat with my son's pediatrian yesterday. I was asking if there are other things we should be testing him for in light of the positive tTG and negative scope. After talking through the possibilities she didn't feel he really had the symptoms to justify testing his thyroid or blood glucose, though he tends to have hypoglycemic-like meltdowns...
  17. October3
    Ahh, okay. No, we do intend to do a trial diet regardless because my thinking is it could still be a gluten intolerance even if not meeting criteria for celiac. But I would really like to have that diagnosis if it is there for the purposes of advocating at school and with skeptical relatives and skeptical doctors, etc.
  18. October3
    Thanks for your thoughts. I'm still trying to figure this all out. What benefit would the other blood tests (Antigliadin, EMA, etc) have since he already has a positive tTG and we intend to do the diet regardless?
  19. October3
    I don't think I'm of much help as I've been trying to figure out the specificity of the tTG without much luck. But here is a table I ran across summarizing studies on the matter. Open Original Shared Link Both sensitivity and specificity seem to be very high in studies, but by reading here and things our GI said make me think it is not so much in actual...
  20. October3
    Came across this abstract of an article in the American Journal of Medicine Aug 2010, written by Dr. Fasano and Carlo Catassi. I'm hoping some of you are familiar with it. I can't access the whole article - it costs $30 to download - yikes! But I have some questions so I'm posting them and hoping someone else has read it- Quote: "the diagnosis of...
  21. October3
    Interesting. I didn't know that about hypothyroid causing anemia or elevated tTG. Thanks for the tip.
  22. October3
    I don't know about celiac causing it, but how tall are you? Someone who has mosaic Turner Syndrome might go through puberty late and have no breast development, and be at high risk for developing celiac as well. If you want to read about TS, this is a good place to start. Open Original Shared Link
  23. October3
    I don't have the written report, but I know he did say they took at least 6 because I asked him about his confidence in the negative scope results and he said they generally figure if they take 6 samples from different areas that something will show up. He said ahead of the scope that it was unlikely they would see any damage and we would need to wait for...
  24. October3
    He was originally tested in an attempt to figure out why he has been anemic several different times in his life. As I have been researching celiac and gluten intolerance he has several of them (meltdowns, cold hands and feet, decreased attention) but all of these can also be explained by the anemia itself. The only testing was the tTG. The GI had already...
  25. October3
    I have spent all last night and this morning reading medical studies about tTG and I'm more confused than I was. Apparently there are false positives with the tTG, but the various statistics I was reading gave it anywhere between a 71% and 95% sensitivity. Our GI told us ahead of the endoscopy that there was only about a 10-15% chance that the scope would...
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