No Diarrhea, No Celiac?

[Kimberly 88]

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?

[mushroom]

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.

[trillium]

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!

[rosetapper23]

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....

[Kimberly 88]

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!

[mushroom]

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.

[Jsny1010]

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.

[Jsny1010]

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!

[IrishHeart]

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??!! 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)

[Kimberly 88]

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.

[researchmomma]

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!

[IrishHeart]

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.

[researchmomma]

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?

[heidi g.]

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

[Kimberly 88]

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! :-(

[researchmomma]

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! :-(

It is so frustrating that a stereotype of "what is Celiac looks like" exists.

You are going to have to really push to get tested but if I were you, I would bring in a list of symptoms from this site or another where they list constipation as being a symptom. I would then plead with your doc and say, please just test us. If her blood work was positive as a baby, it will probably be positive again. Then get her biopsied. With kids, this is the best route because schools will provide her gluten free meals IF she is diagnosed. That is why for kids, if you can get a diagnosis it is much better.

Here is a link to the Wm K Warren Celiac Center in San Diego. They give a list of symptoms in kids: Open Original Shared Link

But if you can't get them to listen.....

You may need to bag the entire thing as far as diagnosis and go gluten free. A diagnosis is not worth poor health. That is what I did. After 6 weeks gluten free my daughter is coming along nicely after years of illness. At her follow up last week, the GI was really pleased that she was feeling better and diagnosed her Non-Celiac Gluten Sensitive. I never gave her the Prilosec she prescribed and she doesn't need it. I guess what I am trying to say is that if you hit a stone wall in regard to a diagnosis and your daughter miraculously does better gluten free, the docs may say "wow, she can't eat gluten". Her blood sugars may stabilize as well (I would lay money on it).

[Mom-of-Two]

So sorry you are not getting the support and answers you need

While I have only been at the quest for answers myself for 2 years, I found it very confusing and frustrating to have drs tell me it was one thing and not persist with more testing, etc. I went back this last round and basically told my dr, I KNOW something is wrong, I want to figure out what it is- she then did an ultrasound, and several different blood tests, one of which was the celiac panel, and I came back very hugely positive. I do NOT have ANY diarreaha---- or constipation for that matter. I have been seeing a very reputable GI dr who specializes in celiac, and she absolutely said that it differs for everyone, some people have no GI symptoms at ALL and have positive blood or biopsy results. In her vast experience with celiac, she said most of her patients have IBS like symptoms of pain and bloating, off and on for years before a celiac diagnosis.

Trust your mommy instinct, and be persistent. My pediatrician says not to test my two kids, but I feel I need to, so I am going to see a pediatric GI dr on my own-- however, insurance varies and I do underhand there are rules and steps to follow in many cases. Just follow your gut, and be strong about this, only YOU know your child. It can take a long time to find the right dr, for sure. I did my research before finding this GI celiac doc, however I am lucky to live by the Cleveland Clinic and have a lot to choose from when it comes to specialists!

Have you actually tried a gluten free diet on her yet?? That could also give you your answer.

[Cara in Boston]

My son (6) had positive blood tests on two markers (only the IgG ones . . . weird, I know) and GI #1 said he did not have Celiac since all IgA tests were negative and he had no symptoms. Since I already had an appointment set up with a Celiac specialist, I kept it, can't hurt to have a second opinion and original MD had no explanation for why his blood test would be elevated. Second MD did biopsy and found extensive damage. He is confirmed celiac. He has never had diarrhea in his life - even as an infant. He was originally given the blood test because his pediatrician was suspicious of a change in behavior that came on kind of suddenly. That was his only symptom. He was perfectly healthy according to all other tests and measurements.

Now, after 9 months gluten-free, if he has gluten he gets a rash around his mouth and a stomach ache (and the horrible behavior lasts about a week). Other than that, no symptoms.

I was tested too - after his blood test came back positive - and had positive blood results as well. My biopsy was completely normal. I went gluten-free too and all my symptoms (I had all the classic ones for about 6 years) went away.

You need to find a different doctor. One who is educated about Celiac Disease and one who will listen to your concerns.

Not sure why the original doctor would "wait and see" . . . wait for what? more damage? It is my understanding that a positive blood test means (at the very least) you are gluten sensitive . . .

I am so very tired of doctors treating symptoms without bothering to look for (and correct) the cause. My doctor put me on meds for GERD (2X a day for life) when all I really needed to do was stop eating gluten.