Doctor That Will Diagnose Based On Genetic Testing And Health History?

[anniebeth]

Is there a doctor that will diagnose celiac based on genetic testing and health history? I am a DQ8 DQ8 and have had every celiac symptom in the book. I have been gluten-free for 2 years and absolutely refuse to start eating gluten again to get testing done. In fact, I'm not even sure after 2 years of healing, if the results would even be accurate from just a few weeks of gluten. I am fine going though life without a "real" diagnosis, but I wish it was completely truthful to tell people I have celiac. That would help my kids as well since doctors would take their genetic link more seriously if their mom actually had a diagnosis of celiac.

[shadowicewolf]

you would have to do 3 months of eating gluten for the tests to be accurate.

[GlutenFreeManna]

There are one or two people on the board that have gotten drs to agree they have celaic based on their extreme symptoms when they eat gluten. I'm not sure if these are "offical" diagnoses written in their charts and all but it sounds like they are. I would think you should be able to request your kids be tested just by explaining your history to a dr that IS knowledgeable of celiac. Especially if they have any symptoms. Unless your insurance doesn't cover the testing your dr should be willing to order the tests for you. If not find a new dr.

[rosetapper23]

Actually, your children may hold the key to your "official" diagnosis. I'd had every symptom in the book since I was a child, and when I finally figured it out at age 47 (I'd given up on doctors by that time), I simply went on the diet and became well again. However, I had my son tested because he had many of the same symptoms....and he tested positive for celiac. When I finally went to a gastroenterologist to have a biopsy done (because I was worried about intestinal cancer, which had killed many of my ancestors), he apologized profusely on behalf of the entire health care system for doctors missing such an obvious diagnosis. He said he was 100% certain I had celiac disease. Of course, the doctors also missed the DH, which my son and I both have, too, but we didn't bother to have that officially diagnosed because we both chose to follow a gluten-free diet for life.

[anniebeth]

There are one or two people on the board that have gotten drs to agree they have celaic based on their extreme symptoms when they eat gluten. I'm not sure if these are "offical" diagnoses written in their charts and all but it sounds like they are. I would think you should be able to request your kids be tested just by explaining your history to a dr that IS knowledgeable of celiac. Especially if they have any symptoms. Unless your insurance doesn't cover the testing your dr should be willing to order the tests for you. If not find a new dr.

The problem with that, is that they have also been gluten free for two years as well. My daughter was the reason we went gluten-free in the first place. She was failure to thrive, had severe reflux, her toenails were growing funky, etc. and they tested her for cystic fibrosis and all sorts of things. The doctor finally did the blood test for celiac and it came back negative, but since she was only about 1 1/2, he said it could be inaccurate and to put her on the diet anyway. We did and there was such a dramatic change in a short period of time, we've never looked back. We all went gluten-free and had crazy amounts of symptoms clear up- some I didn't realize were even related to celiac until I started doing research. I thought at first it was just a gastro disease. Anyway, all three of us are in the same boat right now, but if the kids ever get old enough that they choose to start eating gluten again (think college) and then all their health problems come back, I don't want the doctors messing up their diagnosis and not realizing it runs in the family.

[GlutenFreeManna]

The problem with that, is that they have also been gluten free for two years as well. My daughter was the reason we went gluten-free in the first place. She was failure to thrive, had severe reflux, her toenails were growing funky, etc. and they tested her for cystic fibrosis and all sorts of things. The doctor finally did the blood test for celiac and it came back negative, but since she was only about 1 1/2, he said it could be inaccurate and to put her on the diet anyway. We did and there was such a dramatic change in a short period of time, we've never looked back. We all went gluten-free and had crazy amounts of symptoms clear up- some I didn't realize were even related to celiac until I started doing research. I thought at first it was just a gastro disease. Anyway, all three of us are in the same boat right now, but if the kids ever get old enough that they choose to start eating gluten again (think college) and then all their health problems come back, I don't want the doctors messing up their diagnosis and not realizing it runs in the family.

I know this is not what you want to hear but even with that "official diagnosis" your kids could choose to try eating gluten again when they move out and get on their own. I know of at least one person with a child that did just that--she had positive blood tests but went off the diet once in college. When the symptoms came back she went to the dr and got herself re-tested. The re-test was negative (probably due to beign gluten-free for most her life and only recently addign gluten back in). The dr told her it was IBS and so she continues to eat gluten, be sick and is mad at her parents for "making" her be gluten-free all those years.

Not trying to scare you, this is a worst case scenario. I think one thing you can do to prevent this is to let your kids "own" the choice to be gluten-free from a very early age. Always communicate with them and keep them very educated about the testign and why they don't have tests showing they need the diet. Remind them of how sick they were and let them choose if they want to test the limits even before going off to college. They may choose to try to go back on gluten for testing (they would need to be back on it a minimum of 3 months). Or they may try eating gluten again and realize how aweful it makes them feel and not question it anymore. There are several families on this board that are in the same boat as you (no test results or all test results were negative but the diet helps). Hopefully they will be along soon to encourage you.