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Any one had a false negative when tested for Celiac?

Discussion in 'Parents of Children with Type 1' started by Nevaeh's mommy, Dec 2, 2012.

  1. Nevaeh's mommy

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    My daughter was tested for celiac but has all the symptoms and I am quite worried because she gets so sick at her stomach. We are suppose to go to our regular endo visit Wednesday so I will talk to him then but I think until then we are going to try gluten free foods.

    Any one had a false negative when tested for Celiac?
     
  2. Beach bum

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    Did your endo just run the blood test? If so, I would ask for a referral to a GI specialist for a more thorough work up and possibly an endoscopy (they go in and like at the villi and biopsy it).
     
  3. Jordansmom

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    Both of my kids with celiac tested negative on all bloodwork multiple times. They didn't get a dx until they got their biopsies back.
     
  4. Nevaeh's mommy

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    What exactly is the biopsy? How old were your kids when they had their biopsies?

    You tell me if this sounds familiar.......sick at stomach tons through out the day, very irritable, very tired, weak, looks sick in face to me or tired, I think she's lost weight, is very gasy, having joint/muscle pains (complains about legs and arms hurting alot)......does that sound like Celiac?
     
    Last edited: Dec 2, 2012
  5. Jordansmom

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    Yes, my kids experienced those symptoms. They were adults when we finally insisted on a scope and biopsy. But they had been sick for a long time and had many visits to the pediatrician and Pediatric GI. They never suggested Celiac and I didnt know anything about it until the diabetes dx. And then we went round and round because of negative bloodwork. Until finally my kids just gave in to my suggestion to start eating gluten free, first one and then the other. It was a miracle for both of them. They eventually each separately decided to get a scope to confirm a celiac dx. You have to eat gluten again for a few weeks in order to show results on the scope. They were miserable. They both said that there isnt any food that is worth the symptoms and that they would never eat gluten again.

    I know many young kids who have had endoscopy and biopsy to confirm dx. Its a big decision though. An upper endoscopic biopsy is done under anethesia. They put a camera down the throat and look for damage of the upper part of the small intestine. Then they take a small piece of tissue for biopsy.

    Good luck finding answers. It is very frustrating when you KNOW there is something wrong but can't get a dx or any answers to fix it.
     
  6. Nevaeh's mommy

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    Thank you so much for sharing your personal experiences! I feel certain just like when I read the symptoms of type 1 that Nevaeh has celiac! :( I really hate it and I don't really want to have to do the biopsy. I started tonight making sure she doesn't eat any gluten to see if it helps. Do we have to get a biopsy? Is there any benefit other than knowing for certain? If the gluten free diet works would you do the biopsy if you were in my situation with a five year old? I'm just nervous.

    Thank you so much!!!
     
  7. Jordansmom

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    Just trying a gluten free diet is probably not going to help you find answers. Eating truly gluten free is much harder than most people realize. Its hidden in so many foods. People with Celiac can also get sick from cross contamination of a gluten free food and not even realize they ingested gluten. My kids were old enough to easily understand and express their symptoms, the relief of their symptoms, and then the reoccurance of their symtpoms when eating gluten again. I'm not sure a 5 year old could do that. My children iimediately felt better eating gluten free, but is more common to need to eat gluten free for months before truly seeing improvement of symptoms.

    Your best option is really to see a pediatric GI specialist. You may find they have other food intolerance or another illness altogether. But definitely educate yourself about Celiac and other GI problems and be prepared to advocate for your child if you dont feel you're getting the help you need.

    Choosing to have your young child have a scope is such a personal decision, mostly based on how serious you think their health problems are and also on the advice of you doctor. But with my situation, if my children had been five when we got to this point, yes I would have done the scope. Gluten free living is really hard, especially for young kids and I personally wouldnt put my kids through it unless I was certain it was what they needed to be healthy.
     
  8. Paula+four

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    There's a second test, I believe called IgA, which looks for whether the TTG numbers are accurate. If you are seeing a GI they would know all about it. My husband did test negative for both but going gluten free was a night and day transformation for him. It was never suggested to us that he have a biopsy but that certainly would have been good information. Today he would never choose to go back to eating gluten to have a biopsy done. Any little amount makes him very sick. Our kids on the other hand tested positive without any stomach issues. Best wishes for finding some answers.
     
  9. manda81

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    Both of my children have Celiac, we did not do a biopsy on either. My youngest was dx first, and had every classic symptom. After labs confirmed what we already suspected & we went GF, he had no further issues.

    Our oldest had no physical symptoms (bloating, cramping, upset stomach etc) but had fallen off the growth chart, his labs also came back positive.

    We have been gluten free for a couple years now, and it's not as bad as you might think. It's almost impossible to eat out at a restaurant without wondering if they'll become ill, but it's not the time/money sink that it seemed at the time. We all eat gluten free at home, and we've found a few safe bets for on the go snacks as well.

    We don't regret not doing a biopsy, because we were sure before the first blood test with our youngest, and with the oldest, it was a little more of a leap of faith, but in the past year he's grown a little over 2 inches, and gained almost 15 pounds... so we're all happy with our decision.
     
  10. Meredithsmom

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    Meredith had no symptoms at all. At a suggestion from a CWD conference, I asked that she have blood work to get base lines for thyroid and celiac numbers. Labs came back off the charts for celiac. We asked for a Peds GI referral and had labs done again, with the same result. Then did the GI scope and the biopsy confirmed.

    Going Gluten Free is a HUGE lifestyle change. I wasn't going to make that change without a confirmed diagnosis. Meredith was 5 at the time.
     
  11. Caldercup

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    My son had no symptoms at all, was healthy and tall, and a good student. At his dx, the results of his bloodwork showed astronomically high numbers for celiac. They did a retest a month later (after his BGs were more under control) -- again, astronomically high with the more accurate celiac panel.

    We chose to do the biopsy (about six months after T1D dx) because the new studies had not yet come out that showed high bloodwork results can be used as dx alone, and do not require a biopsy. It was an easy process and showed clear celiac results.

    We went GF -- and I do mean "we." I decided I would go GF, too, so that I could assure myself the food he was eating was tasty. About three months in, we had a cross-contamination issue, and I found myself sick as a dog. I talked to my son's GI who told me to do a celiac panel. Even though I'd been GF for three months, my results were still above normal.

    I did not see a need to do a biopsy -- we already had one celiac in the family, and I'd proven that gluten did a number on me. We've been GF for 3 and a half years now.

    By the way, about a month in to our start of GF living, my son suddenly began growing like a weed, his BGs were more appropriate (the celiac gut reacts strangely when it's still dealing with gluten), and he said school became even easier, as if a "brain fog" had lifted.

    I'm another who sees being GF as challenging, but ultimately easy. And we eat very, very well. We avoid processed foods, and eat foods you can find on the perimeter of the grocery store: meats, dairy, fruits, and vegetables. I use two good all-purpose GF flours with great success, and we eat a minimum of GF packaged products.
     
  12. Flutterby

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    I'd also look into lactose intolerance.. as funny as that sounds. My other daughter was a horrible mess, we thought for sure she had celiac, turned out to be lactose intolerance...
    I'm convinced my youngest daughter had celiac all along and for some reason it wasn't showing up in the blood tests.. it did eventually, and her biopsy was positive. She had absolutely no villi left.
     

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