Help with talking to dr about possible Celiac diagnosis

CHS2005 · July 2011

DS is 3.5 months, We have been wheat free since about 2 months and it is really helping. He is 18 lbs, so he is obviously gaining weight and doing well.The pain, screaming, terrible gas, and crying have for the most part stopped. This was the GI Dr's suggestion to try in an "elimination diet" approach but the Dr didnt actually test DS for anything. I ended up essentially followed a gluten free diet b/c the gluten free stuff is just easier to find than just specifically "wheat free." We have a GI appt tomorrow to follow up and I am wondering how to talk to him about celiac. What were the symptoms you saw in your child? How is Celiac diagnosed specifically vs, say, an intolerance? I have been reading on google, but am looking for some real life experiences. TIA

mcarter127 · July 2011

I would ask for a referral to a pediatric allergist to discuss different testing options. The test for actual Celiac Disease is a blood test. You LO may have an allergy to wheat though & not Celiac & this can be tested for via scratch testing. An allergist can definitely help you decide when to test. Our first GI dr said it was pointless to have allergy testing done before the age of two...we switched GI's & finally got him tested at 11 months after months of reactions & trial & error. Good luck!

mrs_kelly1014 · July 2011

mcarter127:
I would ask for a referral to a pediatric allergist to discuss different testing options. The test for actual Celiac Disease is a blood test. You LO may have an allergy to wheat though & not Celiac & this can be tested for via scratch testing. An allergist can definitely help you decide when to test. Our first GI dr said it was pointless to have allergy testing done before the age of two...we switched GI's & finally got him tested at 11 months after months of reactions & trial & error. Good luck!

DS was allergic to wheat up until recently, and did go through testing for Celiac because he had quite a few signs as he got older.

If they suspect Celiac, they will do a blood test to look for certain markers. However, Celiac cannot be diagnosed with a blood test - they do a biopsy (or a different test for some young kiddos).

That being said, from everything I've read, and from what DS's allergist and GI doctor told us, it would be nearly impossible to have a 3 month old exhibiting signs for Celiac (because there hasn't had enough exposure to really cause much damage to then lead to actual symptoms). The main markers the GI doctor was concerned about was DS's stools (was it always horrible diarrhea?), and was he gaining weight (at the time he wasn't - so they were concerned). They stressed that if he had been gaining weight propoerly that they wouldn't have been concerned - so I'm guessing that will lead to good news for you.

A wheat allergy or intollerence is definitely possible though! DS was wheat free from 9ish months to just over 2yo, and he got SO much better when we got rid of that from his diet. If getting rid of it from your/his diet works - then you've got your culprit!

I'm certain that the GI doctor will bring up testing for Celiac if he/she is at all concerned. That is a common thing that they treat, so if there are any suspicions, he/she will absolutely know to test for it. I don't think you need to mention it at your appointment tomorrow - just wait and see how the appointment goes. The less invasive testing the better!

Good luck!

mrstarawalsh · July 2011

I would think it'd be pretty hard to diagnose Celiac in a 3 month old. There wouldn't be enough intestinal damage for him to be symptomatic. The test is a blood test, but they would have to be on a "normal" diet for it to work, also they do upper and lower GI biopsies via scope.

julandjo · July 2011

mrs_kelly1014:
If they suspect Celiac, they will do a blood test to look for certain markers. However, Celiac cannot be diagnosed with a blood test - they do a biopsy (or a different test for some young kiddos).

I'm certain that the GI doctor will bring up testing for Celiac if he/she is at all concerned. That is a common thing that they treat, so if there are any suspicions, he/she will absolutely know to test for it. I don't think you need to mention it at your appointment tomorrow - just wait and see how the appointment goes. The less invasive testing the better!

Actually, Celiac can be diagnosed by either blood test OR biopsy. They start with the blood test as it's much cheaper and less invasive, and if that's positive, most doctors recommend a biopsy as well. A lot of doctors will call it a done deal with simply a positive blood test too though. It's entirely possible to test negative in one or both tests, and yet still be a Celiac, but a false positive is very rare. There just isn't a solid test developed yet.

I agree that 3mos is too young to be tested. I will say however that both of my kids had the same issues while I was BFing. They couldn't tolerate any gluten. And once we started solid foods, any gluten exposure was a total nightmare. They tested negative for a wheat allergy. Since they couldn't eat any gluten, ever, they could not be tested for Celiac (a Celiac makes antibodies in response to gluten - this is the blood test portion - which blunts the intestinal villi - this is the biopsy portion. Without constant, fairly heavy gluten exposure - we're talking months to years - neither of these disease markers occur and a test will always be negative.). So I decided to get myself tested. Voila! I was a "raging positive" and had a LOT of intestinal damage. Who knew?! So based on MY test results and my kids' symptoms, their doctor diagnosed both of them as Celiacs too.

I tell you this because in my experience, doctors do NOT consider Celiac. My GI doctor actually refused to test me! He said because I wasn't underweight and didn't have chronic diarrhea, there was no way I could have CD. I pushed the issue and said since I was having an endoscopy & colonoscopy anyway for unknown GI trouble, I demanded the test. Imagine his surprise when the results came back! I've been through 8 doctors trying to figure out what was wrong with me, and NONE of them ever mentioned CD. I had to figure it out myself and basically pull teeth to get the testing done. The medical community, by and large, is WAY behind the times on this disease. So as your LO gets older, be vigilant about what reactions he has to foods. If you continue to suspect CD, you'll have to be your own advocate. Good luck, and sorry for the novel!

CHS2005 · July 2011

Thanks ladies. Speaking to an allergist is a really helpful suggestion, I guess I hadn't really realized that a GI specialist and an allergist are not the same. We are are very new to this in our house b/c DH and I have never really dealt with any food allergies. I am REALLY nervous about solid foods and would like a more definitive diagnosis that he is just "sensitive to wheat." We have a few months before then so, we will see what comes up. Thanks

EastCoastBride · July 2011

Keep in mind that any testing for celiac has to be done when there is gluten actually in the system. If your child has been GF for awhile, any test will come back negative.

mrs_kelly1014 · July 2011

julandjo:
mrs_kelly1014:

If they suspect Celiac, they will do a blood test to look for certain markers. However, Celiac cannot be diagnosed with a blood test - they do a biopsy (or a different test for some young kiddos).

I'm certain that the GI doctor will bring up testing for Celiac if he/she is at all concerned. That is a common thing that they treat, so if there are any suspicions, he/she will absolutely know to test for it. I don't think you need to mention it at your appointment tomorrow - just wait and see how the appointment goes. The less invasive testing the better!

Actually, Celiac can be diagnosed by either blood test OR biopsy. They start with the blood test as it's much cheaper and less invasive, and if that's positive, most doctors recommend a biopsy as well. A lot of doctors will call it a done deal with simply a positive blood test too though. It's entirely possible to test negative in one or both tests, and yet still be a Celiac, but a false positive is very rare. There just isn't a solid test developed yet.

I agree that 3mos is too young to be tested. I will say however that both of my kids had the same issues while I was BFing. They couldn't tolerate any gluten. And once we started solid foods, any gluten exposure was a total nightmare. They tested negative for a wheat allergy. Since they couldn't eat any gluten, ever, they could not be tested for Celiac (a Celiac makes antibodies in response to gluten - this is the blood test portion - which blunts the intestinal villi - this is the biopsy portion. Without constant, fairly heavy gluten exposure - we're talking months to years - neither of these disease markers occur and a test will always be negative.). So I decided to get myself tested. Voila! I was a "raging positive" and had a LOT of intestinal damage. Who knew?! So based on MY test results and my kids' symptoms, their doctor diagnosed both of them as Celiacs too.

I tell you this because in my experience, doctors do NOT consider Celiac. My GI doctor actually refused to test me! He said because I wasn't underweight and didn't have chronic diarrhea, there was no way I could have CD. I pushed the issue and said since I was having an endoscopy & colonoscopy anyway for unknown GI trouble, I demanded the test. Imagine his surprise when the results came back! I've been through 8 doctors trying to figure out what was wrong with me, and NONE of them ever mentioned CD. I had to figure it out myself and basically pull teeth to get the testing done. The medical community, by and large, is WAY behind the times on this disease. So as your LO gets older, be vigilant about what reactions he has to foods. If you continue to suspect CD, you'll have to be your own advocate. Good luck, and sorry for the novel!

Right - I absolutely agree with what you say. But, a positive blood test doesn't mean the child/adult actually has Celiac - it just gives more information and would typically then lead to the biopsy since they are showing signs or genetic links towards having it.

julandjo · July 2011

mrs_kelly1014:
julandjo:
mrs_kelly1014:

If they suspect Celiac, they will do a blood test to look for certain markers. However, Celiac cannot be diagnosed with a blood test - they do a biopsy (or a different test for some young kiddos).

I'm certain that the GI doctor will bring up testing for Celiac if he/she is at all concerned. That is a common thing that they treat, so if there are any suspicions, he/she will absolutely know to test for it. I don't think you need to mention it at your appointment tomorrow - just wait and see how the appointment goes. The less invasive testing the better!

Actually, Celiac can be diagnosed by either blood test OR biopsy. They start with the blood test as it's much cheaper and less invasive, and if that's positive, most doctors recommend a biopsy as well. A lot of doctors will call it a done deal with simply a positive blood test too though. It's entirely possible to test negative in one or both tests, and yet still be a Celiac, but a false positive is very rare. There just isn't a solid test developed yet.

I agree that 3mos is too young to be tested. I will say however that both of my kids had the same issues while I was BFing. They couldn't tolerate any gluten. And once we started solid foods, any gluten exposure was a total nightmare. They tested negative for a wheat allergy. Since they couldn't eat any gluten, ever, they could not be tested for Celiac (a Celiac makes antibodies in response to gluten - this is the blood test portion - which blunts the intestinal villi - this is the biopsy portion. Without constant, fairly heavy gluten exposure - we're talking months to years - neither of these disease markers occur and a test will always be negative.). So I decided to get myself tested. Voila! I was a "raging positive" and had a LOT of intestinal damage. Who knew?! So based on MY test results and my kids' symptoms, their doctor diagnosed both of them as Celiacs too.

I tell you this because in my experience, doctors do NOT consider Celiac. My GI doctor actually refused to test me! He said because I wasn't underweight and didn't have chronic diarrhea, there was no way I could have CD. I pushed the issue and said since I was having an endoscopy & colonoscopy anyway for unknown GI trouble, I demanded the test. Imagine his surprise when the results came back! I've been through 8 doctors trying to figure out what was wrong with me, and NONE of them ever mentioned CD. I had to figure it out myself and basically pull teeth to get the testing done. The medical community, by and large, is WAY behind the times on this disease. So as your LO gets older, be vigilant about what reactions he has to foods. If you continue to suspect CD, you'll have to be your own advocate. Good luck, and sorry for the novel!

Right - I absolutely agree with what you say. But, a positive blood test doesn't mean the child/adult actually has Celiac - it just gives more information and would typically then lead to the biopsy since they are showing signs or genetic links towards having it.

I bet you're thinking of the genetic blood test - that only tells you the likelihood of the individual to have Celiac, and cannot be used as a diagnostic test. The antibody blood test, however, is a good diagnostic tool by itself - a positive means that the body is producing antibodies to gluten. It does, however, have a fair amount of false negatives. But a positive antibody test is a positive Celiac test.

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