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Positive for Celiac Disease

Discussion in 'Parents of Children with Type 1' started by StayingStrong, Feb 6, 2012.

  1. Flutterby

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    Not according to the lab we used for the first draw. Their negative was under 20, over 30 was a positive.

    Gotcha on the % now, I thought you ment 5% of damage, not the amount of people that had damage.
     
  2. Darryl

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    Right, that's the "cutoff" that the labs use but no one has a TTG of 20 unless they have celiac. Normal is around 3.
     
  3. Darryl

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    Another study concluded a 100% probability of celiac when TTG is >30, and that does not even take into account EMA which provides additional confidence.
    http://www.ncbi.nlm.nih.gov/pubmed/18194500

    The saddest part of the "gold standard biopsy" is when it comes back negative despite a positive TTG/EMA, and the parent is told that it's not necessary for the child to eat GF. The child then maintains elevated antibodies and an inflamed immune system which will liklely lead to celiac damage (hence the need for repeated biopsies for life until damage is finally found), and could (according to our GI at the pediatric GI department at CHOP) trigger other automimmune responses.

    So what it comes down to after you get a positive celiac blood test is:
    Biopsy negative - You should eat GF
    Biopsy positive - You should eat GF
     
  4. Darryl

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    Nice to see you again Lee. No one said they should ingore a doctor's advice. People come here seeking advice from people other than their doctor, and that is what we all provide based on our experience.
     
  5. Flutterby

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    Again, it depends on the Lab. :cwds:
     
  6. jcanolson

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    "With very few exceptions, a final diagnosis of celiac disease should be based on blood analysis, tissue analysis and response to a gluten-free diet."

    Posted on my fb wall today from the University of Chicago Celiac Center.
    Just thought the timing was interesting.:D
     
  7. KylesMom

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    I find all of this information with the lab results interesting. I would never decide on my own to forego this or any other test that a Dr. orders, but from reading this post I now have some more specific questions that I know to ask the Dr. before my son has this test done...questions I would not have thought to ask before.
     
  8. Darryl

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    I'd ask the doctor what they will recommend if the test comes back negative. Is the doctor willing to assure you that it is safe for your child to continue to eat gluten given that their gluten antibodies are elevated?

    If they will not give you this assurance that gluten is safe for your child, then that leads to the question of why to do the biopsy at all, since the outcome does not affect the treatment.

    They may cite the gold standard, of course, which is true in at least one respect. If biopsy is negative and they advise your child to keep eating gluten, they may invite you back for repeated biopsies probably once a year to catch the damage which is inevitable if TTG is > 30. And that advice times a couple of hundred patients sure is a nice "gold standard" income stream for the dr.

    Think it through. Does the outcome of the biopsy matter?
     
  9. Flutterby

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    Yes, 100% it matters, at least to us. I'm really curious as to why you are so against the biopsy? It takes 10min or less, and will give you accurate results. I would not ever make my child live a gluten free lifestyle if she didn't have the biopsy.
     
  10. Darryl

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    I'm not against it, I just think that it's pointless if the blood test is positive because even if the biopsy is negative, the child has latent celiac disease and should not eat GF anyway.

    http://www.ncbi.nlm.nih.gov/pubmed/19755695
    Small-intestinal histopathology and mortality risk in celiac disease. JAMA. 2009 Sep 16;302(11):1171-8.

    Latent celiac disease was defined as positive celiac disease serology in individuals with normal mucosa (normal biopsy)

    CONCLUSION: Risk of death among patients with celiac disease, inflammation, or latent celiac disease is modestly increased

    Worth asking the Dr. about if your child has a negative biopsy and the Dr. says it's still OK to eat gluten.
     
  11. Annapolis Mom

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    I actually do recommend the biopsy. My daughter's biopsy showed no damage for two years after the numbers told us she had celiac. That gave us two years of eating gluten before we had to bite the gluten-free bullet. We were grateful for those years.

    On the other hand, if your child is having stomach pain or any other kind of distress due to gluten, then it's probably worth it to switch to the diet now.
     
  12. Flutterby

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    You are against it. I just don't see why it matters to you what other families do. I would never make my child go gluten free without doing the biopsy. If her biopsy had come back with no damage, I'm not sure what road we would have taken. But where my child never had many symptoms of celiac, I would contantly be second guessing myself on whether or not she truely had celiac if I hadn't done the biopsy.

    For others, like yourself, you didn't see a need for the biopsy. That worked for you and it may work for others. :cwds:
     
  13. Darryl

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    I am not against it and it doesn't matter to me what other families do. You on the other hand seem to be wholly against my sharing of information if the implications are outside of your comfort zone.

    Leah (the OP) said "a scheduled biopsy is in place and after that the BIG gluten free diet will begin. I'm very overwhelmed." to which I replied with assurance that the GF diet is nothing to be too upset over, and a few published studies showing that the biopsy may not be necessary if she's already certain of the need for the GF diet.

    You and others can try to hijack the discussion with personal attacks if you like, or you could do a little research and find some information that you'd like to share. I am interested in the OP's question and providing personal experience and published medical contant relatingn to the celiac biopsy.
     
  14. Flutterby

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    We obviously have a difference of opinion. I've done my research and I have my opinion as you have yours. I haven't in any way personally attacked you. I asked you why you are against it. I've seen multiple times that where a biopsy comes up you push its not necessary. I and others disagree, its not a personal attack, its an disagreement, thats it.

    I'll stop discussing it with you.
     
  15. StayingStrong

    StayingStrong New Member

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    Thank You, Darryl! You have been very helpful. We are going to go ahead and still go for the biopsy. Our doctors have told us that the chances are very high that he does have it, but incase he doesn't they don't want him being put on the GF diet. However, they have also said that even if there are no sign of damage that he still will more than likely develop it down the road. We are just going to see how this plays out, but because he does have a lot of symptons I'm fairly certain he does have CD. I'm not upset over this, its just something to take in and get adjusted too. More of a sadness for another change he is going through. Thank you once again for all your input! It was helpful.
     
  16. Ellen

    Ellen Senior Member

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    Just want to jump in and say I'm sorry about the new diagnosis.

    Also want to mention that before I went vegan, I discovered this incredibly delicious gluten free bread http://www.againstthegraingourmet.com/
     
  17. Darryl

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    Leah, good luck with everything and no matter what the outcome there's nothing to worry about. Before long you'll be enjoying healthier food, more home cooked meals, and new foods you might never have tried otherwise. If you do start the GF diet and there is a PF Chang's near you, stop in for the best chinese meal you've ever had!
     
  18. Beach bum

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    Sorry about the diagnosis, but you will find great support here. My friends son was diagnosed 10 years ago and it's amazing how many more great products are out there now compared to then.
    I just wanted to say that my very close friend has celiac (she's actually a naturopath that specializes in Celiac) and she had a holiday party. Her MIL (also Celiac) did all the cooking and baking. Every single morsel was gluten free and you would never even have known it! So I guess what I am saying is that while going GF can be a pain, it can also be very doable and the food can be enjoyable. We call Nana "the pie wisperer"' because she makes this really awesome GF pie crust!
     
  19. Caldercup

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    Now, I say this having had my son go through the biopsy....

    But, if I had to do it all over again (with the knowledge from the studies that came out just after the biopsy), I would NOT have had the biopsy done.

    There is risk in any procedure. There's anesthesia, there's potential for bleeding, there's the emotional worry for both the child and parent. A GF diet won't harm them. So what's the issue with just assuming the Celiac -- even temporarily -- and going GF? Then see if their symptoms improve, if they had any. I know it's tough at first, but there's no reason to not try the GFD.

    In our case, even though we were asymptomatic before going on a GF diet, we *knew* the minute he'd been cross contaminated thanks to some awful, awful side effects. The interesting thing was that, I got them too... and I didn't suspect I had Celiac.

    So... did *I* get the biopsy done? Nope! I talked to the GI, had the bloodwork done (three months after going GF) and I was still above 20. I just accepted that I had Celiac and moved on.

    That's just my experience... for what it's worth.

    I'd also like to remind everyone that no one here is taking someone else's opinion here for medical advice. It's just advice from another person dealing with this situation. Just because someone isn't FOR something, doesn't mean they're AGAINST it. They're just giving their experience and their perspective. For some, the biopsy is no big deal -- for others it is. For some, the GF diet is AWFUL --for others, it's no big deal.

    In my opinion, we should be supporting the newly diagnosed, helping calm their fears, giving them our real experiences, giving them product suggestions, helping them cope. I worry that we're SCARING them. And they have enough to deal with without being scared by those who they look to for support and advice.
     
    Last edited: Feb 8, 2012
  20. SueM

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    As we know, the doctor could not assure you that it is safe for your child to continue eating gluten as there are no guarantees in life.

    I guess for me it is a matter of whether or not you wish to follow the standard protocol (of the time) for diagnosing celiac disease. It's been years for us... but it appears that the "proper" protocol is both the blood test and then the biopsy. Maybe Darryl is correct though that all the blood tests that he discusses is enough for a diagnosis... in which case, expect the change to come in time (years, maybe?). It takes a long time for these things to filter down in the medical world (waaaaaayyyyy too long). Having said that, maybe there are other factors involved as to why it really should be considered necessary for the biopsy also. Concerns over accuracy of blood tests, etc. I don't know.

    I will say that anyone who is going through this would want to make sure that they would be able to get an official celiac diagnosis if they did not have the biopsy. (Unless you didn't care about an official diagnosis). For example, our school policy is that we can get gluten free meals for our daughter but only with the doctors orders that she requires it - which would come only with the actual diagnosis of celiac. Now, my daughter barely ever buys lunch at school... but it is an option for her if she wants it but it does require an actual diagnosis. If she didn't get the biopsy, I don't think that our doctor would have given her a diagnosis. Again, this was 10 years ago... so maybe things have changed.
     

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