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Celiac with no symptoms?

Discussion in 'Parents of Children with Type 1' started by dshull, Mar 12, 2013.

  1. dshull

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    Today we had an endo appt and discovered that our son has not grown at all or gained an ounce since his last appt 3 months ago. This immediately put up a red flag for me about celiac. The nurse we saw has a daughter who is T1D, and I know she felt the same way. The endo kind of brushed it aside like all kids grow at different rates, etc, his bloodwork was fine 7 months ago. My son is extremely tall and has always been off the charts for height (over the 99th percentile). I have never once in his life taken him to a doctor's appointment where he had not grown at all. So while this might be normal for some kids, it has not been for him in the last 8 years.

    So now we wait until the next appt. Nurse said if he has still not grown at all, they will re run all of his labs. And now I will try not to worry about this for the next three months. The endo acted like he would have some symptoms, but I know lots of T1D show up with celiac on bloodwork with no symptoms. Has anyone else had this experience??
     
  2. mmgirls

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    I would not pin it directly to Celiac, unfortunately there are plenty of other conditions that can cause no/slow growth.

    what I noticed is that you are within 6 months of DX and in a very short amount of time his little body has gone thru allot. I would give it till the next appointment and re-evaluate and if something is still up then bloodwork will be in order maybe bone testing. But you should be in good hands with an Endo. looking into it.
     
  3. swellman

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    We had solid growth spurts and have had 2 in a row with little growth then it kicked back up again. We were also worried but he started again. I think they checked the thyroid during that time and had a marginal result. Subsequent test have been normal.
     
  4. dshull

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    Thanks for your responses. I know I just have to wait and see how it all pans out. Just one more thing to add to the worry list. Curious what impact the thyroid has on growth? I think that got mentioned today, too, but I was so focused on the celiac I didn't pay too close attention.
     
  5. Darryl

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    Celiac may have no symptoms until adulthood or even late adulthood, but by then there may irreversible damage. There is only one way to diagnose celiac, and that is the simply celiac blood test. It might have already been done on your child at dx, but if not they can do the test any time you like. Don't avoid gluten until after you have the test, though, or the test might not pick up the gluten antibodies. If positive, it's not a big deal at all, you just need to avoid wheat-based breads, pastas, and a couple of other things.
     
  6. swellman

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    Ok ... I've been watching this thread because of, well, you know. But, I have to say I'm scratching my head here for a couple of reasons. I'm not going to say that I've researched it a ton but is it kosher to Dx for Celiac without damage? Isn't there a difference between latent celiac and silent celiac?

    I have the personality of "I know I'm paranoid but am I paranoid enough?" but going on a GF diet simply because of elevated blood tests seems uber paranoid.

    And, Darryl, I've never labeled you a crass but you've twice said it's a simple solution to go GF. I think I have a fairly firm grasp on reality and I would never, ever say that going GF was simple.

    To be clear, I'm not challenging you for your approach but I am challenging you to educate me.
     
  7. mmgirls

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    I sort of feel the same way as Swellman.

    From my point of view going GF is not a super simple thing to do for many families, some I am sure can easily make a switch to GF but I would never think that it would be easy for MY family to do so.
     
  8. SarahKelly

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    I have a friend who has celiac, she also has a daughter with celiac (and t1d). Her daughter repeatedly tested negative on blood tests but then when the mother pushed for a biopsy it came back positive, since on a gluten free diet she has thrived at a rate that she didn't before.
    However, it is important to note that kids don't grow according to growth curves, sometimes (many actually) they grow in spurts so when we have them measured so frequently at endo appts it makes us worry unnecessarily, most kids are just getting checked out once a year. So, I like your endo wouldn't worry unless other things are coinciding. My friend and her daughter noticed feeling a constant state of fatigue, circles under the eyes and the mother noticed she was bloated all the time.
    Not sure if that helps, just what I know :)
    If you're interested in a personal experience with a mother with celiacs and a child with t1d and celiac's check out candyheartsblog.com
     
  9. Lakeman

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    I hope you get this sorted out and best wishes. I think the person who said that you are still only 6 mos from diagnoses was spot on.



    According to this site:

    http://celiac.nih.gov/FAQ.aspx

    as much as 95% of the people affected by celiac are undiagnosed.

    I am guessing that the ability to tolerate wheat gluten is an adaptation that the human race is still acquiring. Many people are lucky to have no problems with wheat gluten but for others it is the normal state of affairs. That is my view anyway - that gluten intolerance is normal and that others are the lucky ones. Even for those who would have no problem whatsoever with wheat gluten there is still the matter of phytates and lectins. At its best wheat is far from a perfect food.

    I wonder how many people have no symptoms of celiac, no symptoms of intolerance, yet still would be better off if they avoided at least most wheat?

    We eat little wheat in our house and it is not hard to do. (As a great positive eating little wheat encourages the kids in a very natural way to eat their fruits and vegetables while also cutting down on sugar.) But I suspect that complete avoidance of wheat gluten would be harder.
     
  10. Meredithsmom

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    In my experience it really IS a big deal to avoid wheat based everything. Since wheat is in almost everything, it can be quite difficult.

    That being said, it is not impossible. It is a major lifestyle change, and before doing that again, I would want to know for absolutely sure that it was warranted. My DD had no symptoms whatsoever and lab work caught the celiac. We repeated the labs and have an endoscopy.

    Again, you are 6 months out of dx, give it some time. And if it is celiac, there is a lot of support out there.
     
  11. swellman

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    For those that were asymptomatic I have a question. What happens if, by chance, a gluten containing food is consumed? If you were asymptomatic before diagnosis is there any noticeable repercussions? I have heard where people accidentally get gluten contamination and it's almost a visit to the ER.
     
  12. Meredithsmom

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    As far as symptoms go if exposed to gluten, we have not had an issue. Now, because DD was asymptomatic before diagnosis, it is very hard for me to tell if she has been exposed. However, I have to believe that she has been once or twice, especially when we eat out. Her blood work (run every 6 months) indicates that she is not consuming/exposed to gluten on a regular basis. Her numbers were normal (from 74 with under 10 being normal to 7.8) within 6 months of going gf. Her last labs were 3.2 with under 10 being in the normal range. But again, it is hard for me to tell if she has had accidental exposure.
     
  13. swellman

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    Thanks, that's what I would assume but I didn't know if one became sensitized once going GF.
     
  14. Caldercup

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    My son was asymptomatic, but the bloodwork was clear. (We did do the biopsy because, at the time, it was the "gold standard" for celiac diagnosis. Now, just the bloodwork is enough for some GI practices.)

    After we went totally GF -- and I joined him because people with MS see improvement going GF -- any time he had a cross-contamination issue, he definitely had symptoms. Cramps, diarrhea, headaches, "brain fog," etc. Same with me. No symptoms before dx/GF, and classic ones after dx/GF. That's how I found out I had celiac as well.


    I know it doesn't seem like it to many of the families that have had to go GF, but, like Darryl, I found going GF relatively easy. I did a lot of reading and a lot of prep work, but keeping us GF has been straighforward in our household. Perhaps that's because we didn't eat a lot of processed food and we didn't eat out much *before* diagnosis, so the transition was relatively smooth. Now, four years in, the only main complaint I have is that it can be expensive at times. And I miss croissants. No GF recipe has ever been able to replicate their texture.
     
  15. Sarah Maddie's Mom

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    I suppose you could call mine asymptomatic in that going GF did not resolve the issues it was thought it would have helped. That said, after a couple of years GF I got a little sloppy over the holidays and did feel rather sick. Seems that abstaining from gluten made me more sensitive to exposure.

    Dx'd off blood work alone - would not put my kid on a GF diet sans biopsy, fwiw. I do find eating GF rather onerous. Fine when I'm home, lousy when I'm traveling or just visiting friends.
     
  16. Flutterby

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    Kaylee didn't have a whole lot of symtoms before being dx with celiac. In act it was a big slap in the face when the dr called with her blood work results. It was always in the ack of my mind, but I never thought (ok, I had HOPED) she would be so lucky to have to dal with celiac as well.

    Te one big symptom she had that we didn't realize was a symptom was growth. She was a peanut, we always thought it was diabetes, but about a year after the celiac dx she began to grow like crazy, her gut had finally healed. I believe she had celiac a lot longer than we knew about,ossobly before D was dx, and for some reason it just wasn't showing in her blood work. When they did her biopsy she had a lot of damage, absolutely no villi.


    While going gluten free is doable, it wasn't and still isn't in anyway shape or form easy. Kaylee has a hard time dealing with being different and having to eat different than her peers and financially it has put a strain on our budget.


    Definitely request blood work if no growth at the next appointment.
     
  17. kim5798

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    It is not as hard to go GF as it was even a few years ago. There are breads that taste decent that can be purchased, there are pastas that taste good, and many readily available foods that can be purchased if there is a trader joes, health food or similar type store in your area. The most difficult thing is dealing with social functions because everything is food related: birthdays, other celebrations, school functions, church gatherings, etc. Learning how to eat at these types of events is what makes celiac the hardest. Also eating out is not as easy if you are newly gluten free because you dont know where to eat or what to order.

    After having done it for a number of years...its just something we deal with. We know what places we can go out to eat safely. She knows how to order at places she is not sure of the safety. We are experts at bringing snacks/food when we visit new places or are just out & about.
     
  18. Ali

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    So I know nothing about this disease. Is it an allergic response? If you feel OK can you just reduce your gluten exposure? Sorry for sounding stupid, I get tested yearly and so far have had no bad tests. Ali
     
  19. Darryl

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    Latent and Silent celiac are the same thing, and mean that your body is reacting to gluten, your TTG antibodies are elevated, and that damage has not yet been observed. From the reading I've done on the immune system over the years, I've surmised that inflamed antibodies are not a good thing for a whole lot of reasons. But Celiac is a peculiar disease because many doctors and patients want to see "actual damage" before acknowledging the need for a GF diet. It's a personal decision and everyone is entitled to their opinion. My opinion is that it's not at all paranoid to eliminate gluten from the diet if gluten is causing your antibodies to be inflamed.

    I do recall at first that eating GF seemed like a big deal, but that was mainly an emotional response. Now 6 years into it, our whole family eats GF at home and it really doesn't seem any different than before with the one exception that we don't order pizza, we make our own. We have GF bread that tastes just like G bread, amazing pasta and ravioli, GF soy sauce, brownie mix, and since we don't drink beer, everything else we used to eat is still OK because everything besides bread, pasta, cookies, brownies, beer, and soy sauce is basically GF. We eat at any restaurant in town, we just talk to the chef first and choose one of many menu items that are GF (even at non-GF restaurants, most foods are GF). My biggest worry at dx - that my dd would not be able to go out to eat with her friends - was completely unfounded. She can eat at any restaurant she wants to. Even at a pizza place, she'll just get a nice salad loaded with meat, cheese, tuna, veggies, etc. Truly, on the scope of "diseases", celiac is a minor bump in the road, in my personal opinion.
     
  20. Darryl

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    No, it's autoimmune. The AI system reacts to gluten, the antibody "TTG" gets inflamed and triggers the AI system to destroy the inner lining of the GI tract. Aside from this cause mal-absorption, the inflamed antibodies can also lead to lymphomas and other health risks.
     

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