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Testing siblings for celiac?

Discussion in 'Celiac' started by Snowflake, Dec 28, 2015.

  1. Snowflake

    Snowflake Approved members

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    For those of you with celiac/T1 kids, how frequently do you test their siblings for celiac?

    We're considering seeking a re-test of our non-celiac, non-T1 3 yr old. He was celiac-antibody negative in early 2014 at about age 21 months, but he had to be tested with two different panels because of an IgA deficiency. Recently, he has been experiencing a lot of tummy troubles and I've been wondering if it's time to retest.

    Unfortunately, we haven't been able to find any guidelines on how often siblings should be retested, and the docs have just told us to do it "periodically." This blog post is the best round-up I could find on the Internet, but there's only one study that recommends a specific interval of 4-5 years:
    http://www.thepatientceliac.com/201...h-siblings-andor-parents-with-celiac-disease/

    I'm curious how often others test siblings? And I'm also wondering if our son was too young at the initial test? I've read some guidelines that caution against testing before age 3 or 4, which is news to me...
     
  2. Cheetah-cub

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    My T1D child has had celiac for 2 years now, but my older daughter has never been tested. Our doctor has offer the test to her many times now, but she is not interested. She has no stomach issues, and is growing quite tall. So, I have not insisted on her getting tested. But if she is beginning to suffer stomach issues or any other celiac related problems, I would have her tested right away.

    I don't know why people would caution against testing before age 3, because some kids have been diagnosed with celiac before the age of 3. I think if your son is experiencing stomach problems, then it is time to get tested.
     
  3. Snowflake

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    I agree with that -- it was a surprise to me to see this advice! Our daughter was 3 when she was dx-ed with celiac. I would hate to think what might have happened, like falling off the growth charts, if testing wasn't available to her at that age.

    It'd certainly be nice if there was clearer, more evidence-based guidance about whom to test and when and how often. I find it surprising how vague the advice is, given how common celiac is!
     
  4. SarahKelly

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    I would ask for him to get retested. It is your right to have the information when you feel it is necessary. I wish I had pushed harder earlier for my son to be re-tested. I believe my son only tested negative at first (19 months old) because he wasn't consuming that much gluten. His endo tests at dx, well at diagnosis my son wasn't eating much...I believe this fact delayed his diagnosis for a long time. I really had to push to have him re-checked at 4.5 years old, as per the protocol they only do the celiac panel at his endo office every 5 years. After his missed diagnosis and his endo team not responding to repeated reports of obvious signs of celiac his now current gastroenterologist has revamped the testing protocol for the children's clinic and retrained the endo staff on symptoms of celiac disease in hopes that other kids don't have to suffer as long as he did and have such a negative impact on their growth.
    With that said, I believe you have the right to have him retested with more clear understanding for how low IgA levels impact results and where to go from there.
     
  5. Snowflake

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    Thanks for sharing this, Sarah. We've been watching and taking notes for his upcoming annual well-child checkup. Over the past month, he's had a number of digestive issues, including a few multi-day bouts of diarrhea (plus other yucky details I'll save for the doctor's office). But what's really amped up our worry, is that he has developed eczema on both arms over the last few days. The eczema doesn't look like DH, but still.

    OTOH, there are indicators that point away from celiac: e.g., he just plain looks healthy and well-nourished, he seems to be staying on his growth curve, he seems to feel fine, and most of the time his appetite is tremendous (if anything his appetite has increased recently).

    We're taking him to the pedi tomorrow rather than wait for the well-child visit, and we will also ask for input from our daughter's GI at her celiac follow-up visit next week. I know this is a celiac board and maybe not the right place to ask this question, but are there other food intolerances we should also rule that could cause this combination of recurrent tummy troubles and skin issues?
     
  6. Snowflake

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    I talked to my daughter's GI doctor today, and for other CWDers who are interested, here's what he said: Celiac antibody testing under age 2 has limited value. Siblings of celiac children should be tested every 2 to 3 years during childhood, or when symptoms warrant.

    We are re-testing my son later this week. I'm currently feeling pretty good that he doesn't have it, based on how intermittent these concerning symptoms have been, although I do think there might be some milder food intolerance at play.
     
  7. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Wow who said not to test before age 3? My sister was hospitalized and almost died at 18 months old from malnutrition before a celiac diagnosis. Yes you can get it young.

    I hope the retest is negative. I was convinced my youngest son had celiac because of chronic vomiting and stomach aches and family history but it turns out it's something totally different (eosinophilic esophagitis caused by food allergies).
     
  8. Snowflake

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    Good question, I should have been more specific. The context was routine screening for young siblings who aren't showing symptoms -- a question I raised because my son was first tested as a toddler following his sister's celiac diagnosis. The GI doctor said that my son's initial test would have had limited value, because there's apparently a high incidence of false negatives in very young children. Symptomatic kids should definitely be tested, you're totally right!

    Thanks for your good wishes! Crossed fingers, and feeling pretty good right now.
     
  9. SarahKelly

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    I wanted to add that I believe Isaac's late diagnosis occurred because he did look so healthy. He was still growing, just had slowed (from 97th % to 85%) and was a very round looking babe. However, that roundness was caused by malnutrition. Think bloated belly, cute on a toddler but when his buddies were loosing their toddler belly his was getting bigger! Anyhow, his big troubles were chronic complaint of pain in his neck, hips, head and mouth. The hip pain was so severe that his pedi had him see a specialist to check for juvenile arthritis. It was a very stressful time. He also had skin rash on fingers and his trunk, what was assumed to be eczema at the time. All of these symptoms went away when gluten was removed from his diet. Never before have I believed that one thing removed from a diet could have such a huge impact on an entire body!
     
  10. Snowflake

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    We got the results back this morning that he's negative for celiac, hooray! I felt a physical weight off my shoulders when we got the news. :)

    Unfortunately, the test results arrived in the midst of another bout of explosive diarrhea, during which our son has missed two days of preschool. I think there's some kind of food intolerance going on, but the pediatrician treats each of these as a distinct virus, even though these episodes are occurring almost weekly.

    Anyway, thanks for the thoughts and support, everyone! At least we've ruled out celiac, and now we can start taking notes on other possible triggers.
     
  11. BrendaK

    BrendaK Neonatal Diabetes Registry

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    Glad it's not celiac but you are probably right it's a food intolerance or something else and not a virus. We ended up seeing a great pediatric gastroenterologist who took her time with a diagnosis. It's 1.5 years and 7 endoscopies later and we are almost done figuring out the food issues. He has eosinophilic esophagitis and at it he has been on a super strict elimination diet since November 2014. Gradually adding foods back in with some bumps in the road. Unfortunately with this disease a scope is needed to test each food (wheat, eggs, soy, nuts, fish, and dairy). But the great news is my son has been the healthiest he's ever been.
     
  12. DiabetesMama

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    Wow! Glad it wasn't celiac! We had some worries earlier but he is doing better. Must have been a short lived tummy bug and a week of weird low numbers to scratch my head about. I am so glad you are in the clear! What does he eat? Is he getting too much of something? It isn't lactose intolerance, is it? I have heard that it too can cause diarrhea. Try to find a pattern of what he's eating on what days then start to remove some of them in question. A food journal might be a great thing, but a big pain at the time. Write down food amounts, times, color of stools, frequency of episodes, etc. Strange question but, you said that he goes to a preschool and I just thought of something. When working at a special-ed preschool, we would use a diluted mixture of bleach and water to sanitize everything overnight. Could it be something environmental he might be ingesting that is bothering him? Do they use any kind of cleaner that might somehow get on the toys then into his mouth? Just a weird option. I hope you get some answers about what is bothering his tummy. You will be in my prayers as you sort out everything. Take care and keep us informed.
     
  13. Snowflake

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    Thanks!

    Brenda, I'm glad you got a diagnosis for your son. Seven scopes! I can't even imagine. The one endoscopy we did for our daughter at celiac diagnosis was traumatic enough! I'm glad to hear all that hard work is paying off, though.

    DiabetesMama, glad to hear that things are doing better with your son, and thanks so much for the prayers and good wishes. I think you're right that lactose intolerance is the next thing to investigate. It may be wishful thinking, but it seems like what's happening is on the milder end of the food intolerance spectrum, since he is growing ok and his belly isn't distended.

    And, man, do my kids eat dairy. They practically live on cheese -- it was our go-to free food when our dd was on MDI. And then when she went GF, she really doubled down on the cheese consumption -- and of course her little brother wants one of whatever she has! It's SO nice to have one thing in the fridge she can grab without label reading or carb counting, but things might have gotten a little out of hand. :) Anyway, I think we'll investigate lactose intolerance first; and good suggestion to keep a food diary, so we can see if we spot any other possible culprits!
     
  14. DiabetesMama

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    And you know the sad thing, mine won't even eat cheese! I told him what a great thing it would be if he could try to eat cheese because it would be a free food for him, but he only likes parmesan cheese on spaghetti. I hope that it isn't lactose though, especially since he seems to enjoy dairy. I will keep you in my prayers as you try to figure things out. Hugs!
     

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