17 replies to this topic

[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: Celiac Center

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.