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Celiac?

Discussion in 'Parents of Children with Type 1' started by jgoering, May 9, 2015.

  1. jgoering

    jgoering Approved members

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    My son, Evan (almost 9 years old), has had type 1 for almost 6 years. Last summer, he was having absorption issues. We went to Children's Mercy and they put him on Prilosec. We did the Celiac panel and it was all clear. We did prilosec for 3 months and it seemed to help. Lately, he's been complaining of his tummy hurting again and we started seeing issues with absorption, so he started back on prilosec. Since he's been on the prilosec this time (about 2 weeks), he has complained more of his tummy and we've had several issues with ketones. We haven't hardly had any issues with ketones until now. I'm just wondering if this could be celiacs or something else. Does anyone have any suggestions? He is on an omnipod pump and we change the pods every other day. He also has Dexcom and his 24 hour graphs are straight mountains...makes me sad.
    Please offer any advice! Thanks in advance!
     
  2. Cheetah-cub

    Cheetah-cub Approved members

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    Sorry you guys have new trouble to deal with. The only way to confirm or rule out celiac is through a blood test, then an endoscopy.

    Maybe at your next endo appt ask your doctor for a blood test to run the celiac panel again. Also, maybe start a food/tummy ache journal and see if it could be something related to something else.

    Also, if celiac is ruled out again, you can still try gluten free for a few weeks and see if the problem go away. Could be just an intolerance to gluten. (Don't go gluten free before the celiac tests).
     
  3. jgoering

    jgoering Approved members

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    Thank you!!! Great idea. We have an appointment with our endo the first of June, so we'll ask then. Thanks!
     
  4. Lakeman

    Lakeman Approved members

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    I hope things have gotten better while you are waiting for your appointment.

    Cheeta-cub is right that you should not go gluten free before being tested. If your son is not exposed to gluten before the test then it will not show a problem. I could ad that you can go gluten free for a time then add it back in before the test. If you remove gluten and things get better gradually then you have a clue.

    I do wonder why you got the prescription for Prilosec. It's purpose is to reduce stomach acid. Do you have a reason to think that there is excess stomach acid? I see that it helped and that is good. Poor absorbption could also be related to too little stomach acid cause the purpose of stomach acid is after all to activate pepsin which helps with digestion. An alternative to try would be to experiment with some probiotics. The powders and pills are kind of expensive though I wouldn't let that hold me back. Or you could make some live Ginger Ale.

    My daughter had a stomach bug a few months back and we too questioned if it were celiac after weeks of poor absorbption and lows. We got lucky that it was not but before that I would not have thought that a simple stomach bug could effect her stomach for weeks. Was he on antibiotics before this started?

    In my life experimenting with various remedies has often been helpful and lead to answers that we otherwise would not have found.

    Best wishes and hoping that it is not Celiac.
     
  5. SarahKelly

    SarahKelly Approved members

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    I was wondering about the Prilosec, too...that is often overprescribed with too little info on the long term effects on children. My oldest had acid reflux as a young child (until about 3) and his doctor really wanted him on it, but instead we found that there were a variety of foods in his diet leading to the acid reflux and therefor through an elimination diet were ablo to help him without the harsh side effects of Prilosec. It actually causes your body to stop making an appropriate amount of acid to break down food in the long run, which is why we tried to avoid it. If your son is having consisten abdominal pain I would make an appointment with the local Pediatric GI. Once an appointment is set you can send an email asking if there are specific blood work tests that could be done in advance to help make the appointment more useful, I have found that this is usually a positively regarded email and then when we meet there is more information to go on than just a tummy ache.
    My youngest child, who has type 1 and celiac, tested negative for celiac disease twice before he tested positive. When he was positive his antibody #was 790!!! We really had to push for the retest, but I also had to get him to eat gluten consistently prior to the testing. He had basically put himself on a GF diet - he'd pick the meat out of the sandwiches, he'd only eat fruit, veggies, rice and meats. He was reactive to dairy and therefor wouldn't eat that either. Now that we know he has celiac disease his gut has healed and he can eat a lot more. He, like your son, had absorption issues - I had a steady list of foods that I just couldn't give insulin for, now that isn't a problem unless he's had a tummy bug. So...see if you can get a GI appt, push for additional testing - one thing I learned was that my older son and I will never test positive to the antibody tests as we don't make enough of that globulin. We chose to do genetic testing for him and I instead. :) My only major tip is to not stop questioning about he absorption issues and tummy ache, it took us at least a year of pushing to get the test redone and find out for sure what was going on. Just knowing and having him healing is all worth it.
     
  6. Snowflake

    Snowflake Approved members

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    I agree with you, Sarah. When our daughter was an infant, our family dr put our daughter on reflux drugs (briefly omeprazole, though she spent more time on ranitidine) due to infant reflux and occasional projectile vomitting, after we ruled out all serious possible causes of the reflux like pyloric stenosis. In hindsight, I think that those prescriptions were probably overly aggressive treatment of a pretty minor problem. There was a study recently correlating acid suppressing drugs with later development celiac, and while the study's not in any way conclusive, I think the use of these drugs in small children definitely needs more research: http://celiac.org/blog/2014/06/23/celiac-disease-risk-linked-proton-pump-inhibitor-medication/

    To the o/p: I'm sorry to wander off the topic of your original question a little, and I agree with all the advice about continuing gluten consumption before celiac testing. It sounds like you're pretty educated about all of this, but a couple of indicators of celiac-related malabsorption that you might keep an eye out for are iron deficiency, and recurrent lows that are difficult to treat. I hope you and your child find some answers soon!
     

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