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No Diarrhea, No Celiac?


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17 replies to this topic

#1 Kimberly 88

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Posted 10 February 2012 - 06:58 PM

My four year old daughter tested positive on 2 markers(i dont know what that means) when she was one for celiac. They wanted to wait till she got older to retest. She has sezuires due to a metabolic disarangment, and many ither symptoms. She is a healthy weight and no diarrhea. He new primary care wont test her. Said the odds of her having celiac without diarrhea is nearly impossible. Do you feel this is true? Or should i take her somewhere else?
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#2 mushroom

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Posted 10 February 2012 - 07:11 PM

Your doctor is wrong. It is perfectly possible. Some celiacs have no GI symptoms at all - in fact some have No Symptoms at all. Find the copy of her previous test and take her to another doctor. Seizures can also be triggered by gluten, by the way. :huh:
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#3 trillium

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Posted 10 February 2012 - 07:45 PM

If her new primary won't test her even if you do show them the old lab results, I do believe it is time to find a new physician for her. One that would ignore the requests of a parent to put your mind at ease is one that you will definitely butt heads with in the future. Good luck in getting that Dr to listen!
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#4 rosetapper23

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Posted 10 February 2012 - 08:57 PM

Good grief! That doctor is very ignorant! Some celiacs have diarrhea, some have constipation, and MANY have no digestive complaints at all. For example, I had celiac since I was a young child, but I didn't develop diarrhea until I was 47. Please change doctors....
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#5 Kimberly 88

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Posted 10 February 2012 - 09:00 PM

Thanks guys. She has had a lot of bouts of voimeting lately which lead fo several doctor appointments. Her primary care said she has indegestion so he started her on Zantac. She has had a lot if blood sugar problems. Has been in and out if icu since 6months old for blood sugar of 40the than really high at 300+. The ER doctor said the same rhings as her pc. That if no diarrhea than no celiac. Im so frustrated!
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#6 mushroom

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Posted 10 February 2012 - 09:38 PM

Do you need a referrral to a pediatric GI? In my book no 4-year-old should be on Zantac. She needs a proper review of her overall healthl. Just my humble opinion.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 Jsny1010

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Posted 10 February 2012 - 09:41 PM

It seems like alot of doctors dont want to think about celiac, my Dr and GI, focus on ANY reason I could not have it.. my GI kept telling me I probably just have lactose intolerance even though I've handled milk products fine up until about 5 years ago when Im guessing a traumatic experience triggered my issues, hope they listen to you or you find a more understanding doctor.
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#8 Jsny1010

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Posted 10 February 2012 - 10:07 PM

Thanks guys. She has had a lot of bouts of voimeting lately which lead fo several doctor appointments. Her primary care said she has indegestion so he started her on Zantac. She has had a lot if blood sugar problems. Has been in and out if icu since 6months old for blood sugar of 40the than really high at 300+. The ER doctor said the same rhings as her pc. That if no diarrhea than no celiac. Im so frustrated!


Im not sure if it helps but Celiac does have a link between type 1 diabetes and celiac, even if they dont diagnose it cant hurt to be on the diet, its a terrible feeling when kids are sick i wish you the best!
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#9 IrishHeart

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Posted 11 February 2012 - 06:50 AM

Agree completely with Mushroom --she needs someone to look at all her symptoms collectively.

There are people with NO Gastro/bowel issues at all.
And I was told the same thing. For years. "If you do not have floating, smelly stools, you do not have Celiac. Plus, you are overweight!" (--well, I was until I lost 90lbs. rapidly.) What hogwash!

Okay, so I have them now and I'm slowly dying, and I have about 65 MORE symptoms--- now what??!! :blink: ARGH!

Hon, no child should be on zantac!

And, what if her problem is actually LOW stomach acid (as I had?)

Please, bring her to another doctor. Too many symptoms to ignore, especially the seizures and blood glucose level swings.

I know of another Mom who is in the same boat. I'll see if I can get her to post to help you with some thoughts. (researchmomma)
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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#10 Kimberly 88

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Posted 11 February 2012 - 07:23 AM

It is possible to go to the gi specalist without a referal from her primary care? I really appreciate all the feedback. I have become so frustrated. No one believes me. I have gastritis and a lot of similar symptoms (bloating,nausea...) so im fairly certain that if she has it i gave it to ger,and it makes me feel guilty. Its been a roller coasted with her since very young, im ready to jump off and get on the right track.
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#11 researchmomma

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Posted 11 February 2012 - 07:58 AM

Hi and welcome to the Boards.

Many children do not get positive blood work even if they have full blown Celiac. Much like my 18 month old neighbor. When they did an upper GI to look for structural issues or ulcer, they biopsied him because it is hospital policy. He had Celiac and negative blood work. He was in crisis and almost died.

If your daughter tested positive, then she should have been sent to a pediatric GI. It was bad practice to tell you to wait a few years and see what happens.
My daughter had constipation since she was born. She also had reflux. Fast forward a few years and seizures started. She asthma and eczema and a host of other issues. I WISH I had her go gluten free back then. How much would I have avoided?

My advice is that you need a new doctor. If you can't find one and you can swing 200 dollars, you can order the Celiac Panel yourself through www.ineedlabs.com But I highly recommend you find a pediatric GI that will test her.

Diabetes and Celiac go hand in hand. You don't want her to develop other autoimmune disorders. You have a right to ask for tests from your doctor. That is what he/she is there for. You can also bring some articles that prove that constipation is a symptom of Celiac.

That positive blood work is really bugging me because she should have been scoped then.

She sounds Celiac to me. BTW, when my daughter went gluten-free her acid reflux issues went away after two weeks and her constipation is much better after 6 weeks. She had as soft normal colored BM yesterday and we did a happy dance. Her doctor had prescribed an adult dose of prilosec that we never gave her. Poof, her acid reflux is gone!

Hope this helps! I am running off to a basketball game for my son!

Have a good day and ask any questions that come to mind. I hope she feels better soon. When she does, you will! I did!
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#12 IrishHeart

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Posted 11 February 2012 - 08:03 AM

It is possible to go to the gi specalist without a referal from her primary care? I really appreciate all the feedback. I have become so frustrated. No one believes me. I have gastritis and a lot of similar symptoms (bloating,nausea...) so im fairly certain that if she has it i gave it to ger,and it makes me feel guilty. Its been a roller coasted with her since very young, im ready to jump off and get on the right track.


The referral policy depends on your insurance company, hon. Some do require them, some do not.

Do not feel guilty! You are doing all you can to get her straightened out. You're a great Mom! In the end, you both may feel better off gluten.

You may wish to be tested yourself.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"LTES"  Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 researchmomma

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Posted 11 February 2012 - 08:15 AM

The referral policy depends on your insurance company, hon. Some do require them, some do not.

Do not feel guilty! You are doing all you can to get her straightened out. You're a great Mom! In the end, you both may feel better off gluten.

You may wish to be tested yourself.


Yes, you should be probably tested too. If you have a PPO, you do not need a referral. HMOs typically require referral. Do you know which you have?
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#14 heidi g.

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Posted 11 February 2012 - 11:11 AM

My son has diarrhea and I had no diarrhea! Its different for everybody. The doctor was being ignorant he obviously needs to do a little more research what a door knob
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#15 Kimberly 88

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Posted 11 February 2012 - 04:18 PM

She has Medicade, she did see a GI specialist when she was young and he was the one who wanted to wait. At the time it made sense, but looking back now im kicking myself. I have considered getting tested also. I have had several scopes done due to stomach pain and they just said its gastritis. I had my galbladder removed but i still have very freguent "attacks". Not able to eat very much without blowing up like a baloon and im have bouts of diarrhea and constipation. Very confusing. She was tested several times for diabetes, but ger A1C levels were always boarderline. We still have ro check her sugars 2times daily. I just want to get it figured out. I guess i need to find a doctor for the both of us who will listen! :-(
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