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Brit1612

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Brit1612

  1. Brit1612
    That's what I figured. I just keep doubting everything. Keep asking myself "he seems normal now, should we even be doing another surgery....etc" It's so hard when you are dealing with someone who can't even tell you how he's been feeling. Do any of you know anything about the low serum IGM? Especially since he has low IGA as well. Thanks
  2. Brit1612
    Thanks for the link.....I will check it out in just a second. Not sure if she is looking for something specific with the colonoscopy or is just doing it because he is already going to be under. She said she didn't want to have to do the colonoscopy later down the line if we were still needing results. She specifically told me that with his positive reducing...
  3. Brit1612
    Thank y'all for replying. I don't think the original results were wrong, considering he showed positive two different times for the ttg igg, but I have a hard time understanding how he would be positive while gluten free, and now be negative after a gluten challenge???? I guess I was wondering how likely it was that these most recent (negative results)...
  4. Brit1612
    We have been anxiously waiting doing our sons bloodwork, post gluten challenge, since it will be the first time ALL the correct test are being ran, while being on gluten. I am going to give you the original results (WHILE GLUTEN FREE) and then the results I saw yesterday..... (I can't help but wonder "are these even accurate?) On Gluten-FREE diet...
  5. Brit1612
    Ok, so I am STILL CONFUSED, like I knew I likely would be..... Newest test results (after about 10 weeks of a gluten challenge): ttg igg went DOWN (it was a 15 after being gluten free, now it is <1 after 10 weeks of gluten!???) DGP igg - <1 All iga based celiac test were also negative, but he is IGA deficient, so those were not too revealing...
  6. Brit1612
    Cycling lady- Thanks for the feedback on ALL my questions! On this board everyone seems to say "high ttg igg likely is celiac disease" but the doctors I have gone to don't really back that up. They seem to think one unusual test alone doesn't mean much. To me, there has to be some reason, celiac or something else, that would cause that result to be high...
  7. Brit1612
    Also, I do understand that being gluten free has nothing to do with these numbers, but I was thinking IF he has celiac he could have been deficient and we didn't know it, which could have led to anemia.....
  8. Brit1612
    Sorry for asking more questions! When I talked to the GI after our initial round of testing (for my 2 year old son), only the positive reducing substances and the high ttg igg were mentioned. Was told there was no anemia or deficiencies. But I went on to his "patient portal" and noticed that there were a few other numbers that were "out of the normal range...
  9. Brit1612
    I am new to all this, so someone correct me if I am wrong..... I am surpised that "visible damage" along with a high blood test result was not enough for a celiac diagnosis for you. If it were me, I think I would take your results to a new GI, and get a second opinion. You wouldn't have to re-test, just bring them the test you have already had. If you...
  10. Brit1612
    The GI had actually ordered the repeat ttg igg, and the ema igg, but that paper was missing out of the ones they printed out for me. So hopefully we will get some meaningful results. Also, the GI called back and said that she wants us to put him on a daily regiment of miralax. This seems so odd for someone who has issues with loose stools much more...
  11. Brit1612
    So, I just looked up my ferratin level. It was a 4 and the range was 6-137, this was when I was initially tested. I don't think it was retested when the hemoglobin was re-tested. On the new test results when my level was up to an 11.6 (from a 7.7) I did notice these levels were still not in the normal range.....(The doctor didn't mention anything about...
  12. Brit1612
    Would this be considered "unexplained"? The hematologist thought the bleeding was the explanation.
  13. Brit1612
    I know I can't "give" them the genes...... What I was wondering was if the antibodies could be passed through breastmilk, I had read this on the forum somewhere, and if the exposure to them could "trigger" celiac (considering I already know he has the genes).
  14. Brit1612
    cyclinglady - I had my blood levels rechecked a couple months after the iron infusions and they had went back up from a 7.7 to an 11.5. I have often heard that celiacs who are anemic have trouble getting their numbers back up to normal. I don't know what my ferritin(sp?) is now, but it was almost a 0 when it was checked initially. I honestly didn't even...
  15. Brit1612
    So, I know y'all probably get a lot of the same types of questions a lot on this board, but I think I have a question you have never heard before . I don't usually discuss this with anyone (other than family), but I am going to share because I am curious. My boys (2 and 4 ,,,,the 2 year old is why I am on this board, in the process of possibly being...
  16. Brit1612
    Ok, thanks for the input....I am so anxious to get everything done, but the low IGA makes things so difficult! He honestly seems "fine" during the gluten challenge, which makes me wonder. He has had some changes in stool pattern, and some really bad moods that were uncharacteristic, but I really expected to see more "if" he is celiac. (considering he had...
  17. Brit1612
    Ok, so I pulled out my blood orders (post-dated for the ended of the month), to see what exactly they had ordered. So here is the list: IGA (he already had a low result once / so I know some of the other test I am about to mention will be unreliable) IGG IGM ttg - iga EMA - Iga DGP - iga DGP - igg I have a call in to the doctor...
  18. Brit1612
    Yes, he has been checked for parasites numerous times over the last year, always comes back negative. As for the EMA, if it is for more advanced disease, it would seem unlikely that he would show positive considering he is only barely 2 years old. Should I push this test or just stick to the others they are running? I may take a picture of the...
  19. Brit1612
    No, they were the same. Different labs, but both had a reference range of <6 being negatice, 6 to 8 being "elevated" and >8 positive. So the first time he fell in the "elevated" range so they seemed to blow it off a bit. But this time it came back "positive" (after being gluten free for a couple months).
  20. Brit1612
    I am having a hard time knowing if the gluten is affecting him or not. While gluten free he was pretty consistent....sludge like like brown / yellow poop. (never went back to normal, even after 4.5 months) Now, during the gluten challenge, the first 1 1/2 weeks he was very constipated (something he has never had before). Then he went back to pretty...
  21. Brit1612
    Well the pale (or light yellow colored) poop is something he has had the whole time on the gluten free diet as well. He hasn't had brown poop in almost a year now (since all of this started). But the color did change from green majority of the time, to the light brown, pale yellow color that he has had for a while now. We have done tons of stool test,...
  22. Brit1612
    If anyone is still reading this thread..... I am curious to the reaction he is having going back on gluten. He has been back on gluten for a little over a week now. The first few days, I thought he was have no side effects of going back on a gluten diet, but over the first 9 days he has only pooped 3 times. The first 2 times were sludge, like always...
  23. Brit1612
    Thank you so much for the thoughtful response. It is just frustrating to have an abnormal test result that the doctors can't seem to explain. She still seems to think that it is celiac, but if so, then why did his ttg igg double on a gluten free diet?! It is just hard to not know what is going on with your little one, especially since he can't even talk...
  24. Brit1612
    I'm sorry I am not trying to be difficult or ignorant, but I still don't think we are talking about the same thing. He has NEVER had his total IgG tested. He has had his total IgA (which was a 19, we were told 25 was normal for a kid his age). Am I just not understanding something???? I did ask for his total IgG to be tested with this next round...
  25. Brit1612
    Thank you for the info. We are going to be testing everything this time, but now I am in the waiting game for the next 2 months. Just put him back on a "normal" diet (besides dairy) for the gluten challenge. Then she is running all kinds of blood work and likely doing an upper and lower GI a week later (as soon as the blood results are in). Can you give...
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