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appletree729

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Everything posted by appletree729

  1. appletree729
    Thanks so much for your reply - I'm not sure that the TTG IgG was included in my last round of tests - if it was, it was negative, so if that's the case, it's higher now. The reason we did the biopsy was because of symptoms (mostly unexplained abdominal pain), the anemia and positive genetic tests, and also because my kids are having so many problems and...
  2. appletree729
    I've had a negative biopsy and mostly normal labs from a few years ago. I asked my doctor to retest recently and everything was normal with the exception of my TTG IgG test which resulted in a strong positive - here are the results: IgA normal - 161 (range 91 - 414) deamidated gliadin Abs IgA - 7 (range 0-19) deamidated gliadin abs IgG - 3 (range...
  3. appletree729
    Thank you both so very much for your responses! I really appreciate it - looking forward to hopefully getting some answers. I'm quite sure she has the gene - she specifically has not been tested, but others in our family have. I have two copies, my other daughter has two copies, my husband has one copy but celiac runs in his family and although all of...
  4. appletree729
    My 8 year old daughter's bloodwork indicated a high deamidated gliadin (IgG) result last fall (21 - positive was anything > or = to 20). Her doctor suggested we retest after several months since the result was only slightly positive - thinking that perhaps it was the beginning of celiac? Or maybe nothing or something else besides celiac. Anyway ...
  5. appletree729
    I know :/ I'm trying to be positive about it all, but my understanding was that the test result was more significant than she seemed to think it was. But then I also feel like I'm being a hypochondriac sometimes, and want to respect the doctor's training and experience (but not blindly). Anyway… we are going to go ahead with the six month trial. Her s...
  6. appletree729
    Update time! Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/ She said that the endomysial abs test was more specific and a positive result on that test would have her thinking...
  7. appletree729
    Thank you, Nicole!! I have not seen that chart yet, so I'm glad you took the time to post it again I am so very curious to see what her doctor has to say about all of this...
  8. appletree729
    Just wanted to post an update. I emailed the doctor today after not hearing back from them last week (I had left a message via a receptionist), and I just got a phone call from the GI dept requesting to see her at 2pm tomorrow! Hopefully I will be able to update with more information after the appointment, in case anyone else out there is wondering about...
  9. appletree729
    It's only the end if you choose to make it the end Go see another dermatologist and request (demand) a biopsy. Bring in some literature with you that describes DH and the similarities between what you have and DH, the proper way to do the biopsy, etc. and use it if they question the need to biopsy. Be respectful and polite and have a line on hand...
  10. appletree729
    My son also has migraines that only affect his vision. His experience is a little different (its called "Alice in Wonderland Syndrome", where there are perceptual changes, like things look really far away, or like he is huge and all his surroundings are small/far away). He will also "see colors", dots, etc, which I think is the more typical visual disturbance...
  11. appletree729
    Thank you so much for the reply, Lisa! To answer your questions - total serum IgA is 104, within the normal range (reference is 41-368 mg/dL) tTG - I'm assuming this is the tissue transglutaminase test? if so, it looks like she was only tested for the IgA and *not* IgG. IgA was within normal ranges. No nutrient testing so far. She is...
  12. appletree729
    One other thing that I want to mention - you said something about waiting until they are older for the blood test. According to our doctor, it is very important to NOT wait with a child. She is one of the more prominent docs as far as pediatric celiac disease is concerned, and says that if a child is diagnosed after they turn 10 years of age, their chance...
  13. appletree729
    I can relate - my 7 year old (who I posted about in the other thread that you responded to!) has very, very high anxiety like you describe - maybe not quite as severe, but what you described rang a bell for me... I'm pretty sure that if you want a definitive diagnosis, you will need to at least get bloodwork done at some point. Has she been to a GI doctor...
  14. appletree729
    Thank you so much for your response! And yes- it does help very much! My lab report did not say much other than "consider DQ2 and DQ8 testing to rule out celiac disease. We've done that in the past and she has at least one of those. So can I clarify that you had the *deamidated* gliadin igg test? I actually thought that this test was specifically...
  15. appletree729
    Our pediatrician is not as familiar with these tests, (I specifically requested this one), so I'd like to ask here and I'm hoping you all will share your wisdom:) We've been through so much with digestive and growth issues with all of my kids (4 of them), and most celiac tests have been negative so far. Everyone does have at least one component of the genetic...
  16. appletree729
    Well, got the results today and everything came back normal.. so no celiac disease. I should be happy, right?! But oddly, I'm actually disappointed. This would have been a manageable, not so serious diagnosis with an easy solution that didn't require medication. Oh well. Mystery still remains as to the cause of my abdominal pain, brain fog and all...
  17. appletree729
    "The small intestine is about 15 to 32 feet in length. It is very possible to miss damage." lol - I know. I just meant that I was happy that he took so many biopsies because I know that is important. Not sure if there are many doctors out there that take more than 8 biopsies... In any case, if there is damage, I hope it's picked up on the biopsies...
  18. appletree729
    Thanks for the responses everyone Just got home - things went really well and my doctor said that everything looked great, and that he doubts I have celiac, but of course we need to wait for the test results, so we shall see! He took 7-8 biopsies so I feel like if there is damage there, it's likely to be found with so many! Happy that I don't have...
  19. appletree729
    I'm so happy to report that I'm finally getting my endoscopy done tomorrow! I don't know what it will show - if I'm true celiac or not - but I'm giving up gluten regardless. I've had a nice several weeks of chowing on all the best gluten-laden foods I could find and now I'm ready Anyway - how long until you get the biopsy results? Is it just a few...
  20. appletree729
    THank you all for the replies So yes - he has been gluten 'light' and gluten free on and off. hmmm... In any case, I actually don't think I've convinced him of the necessity of going to get a biopsy anyway so it's probably just as well.. I was just so (oddly) excited when his rash appeared again because I really wanted him to have it biopsied ...
  21. appletree729
    So when you go in to get a skin biopsy, what should you tell the doctor? "please make sure to take the biopsy 'next to' the lesion and not on top of it? How do you know that it is done correctly? Are there any guidelines that you all can share with me? My husband gets this rash that comes and goes - he's been getting it for years and even before I...
  22. appletree729
    Wow - don't go to that internist again! And don't give up, even though the 'expert' internist seemed to suggest that this is what you need to do. To accept this. You're doing the right things by questioning/seeking answers and even though it's frustrating, keep doing it. I would also look into finding another doctor for a second/third opinion and a...
  23. appletree729
    oh yes - thank you - that is why I'm so annoyed that I have to wait so long! I want to stop eating gluten now and start to get healthy again but I know I can't until the biopsy is done. I've been gluten free in the past though as a trial - that's how I knew that I felt better with no gluten. But it's been over a year since I was gluten-free.
  24. appletree729
    I actually am hoping that I *do* as the treatment does not involve medication, and it's not something scary like cancer. So what do you think the chances are that I have it? I've got an endoscopy/biopsy and colonoscopy scheduled for later in October. I'm 36 years old, mom of 4. Symptoms: nagging abdominal pain (why I started going to the doctor...
  25. appletree729
    yes - thank you. That does help. Just got my results back and seems it doesn't apply to me anyway. No antibody detected for me but I am anemic, so they say there is still good reason to go ahead with the biopsy.
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