Day 1 of 14
I hear the following all the time: “I don’t have celiac disease, but I was diagnosed with gluten sensitivity by my doctor.” The question is…is there really a valid test out there for gluten intolerance, or are people being misled and possibly scammed??
Here’s an email I just received this week from a frustrated mom who doesn’t know who to trust or where to turn:
After I listened to everything on the Gluten Free Society web site with Dr. Osborne I went to make an an appointment and Googled his office and your blog post called “I Hate Gluten free Society” came up. (Dude note: hee hee.) So naturally I read through all the post. I totally agree with you on how he charges for everything but I’m new to all of this and I have a question.
My daughter has suffered with sever eczema since birth (around 2 weeks of age) we had to wet wrap her daily and she was unable to attend school until she was in the 4th grade. She still suffers with eczema but it’s more manageable. Then last week I was just diagnosed with Hashimoto Thyroiditis. I went on the search for everything about Hashimoto and it all points to an autoimmune. When you read about autoimmune, it points to gluten sensitivity and same for eczema.
One thing that your website did not cover, or I couldn’t find it, was how do we do testing for gluten sensitivity? Dr. Osborne talked about specialized testing (all the antibodies) that your general GI doctor does not do. I was tested and came out negative and my daughter was tested for Celiac but it came out negative as well. We have removed wheat and all the other gluten foods, but not corn or rice. We have also removed dairy from our diets. I’m so confused as to what we can and cannot eat. I was going to go see Dr. Osborne as we have been to so many doctors and no one has been able to help us so far other than steroids, and now oral medication for me. Everything I read points to nutrition.
How do we get tested, and who do I believe? UGH! I would love your opinion and any advice you can give me. Thank you.
First of all, I’m really sorry to hear of your daughter’s struggles.
Secondly, Dr. Osborne sells fear. If you read through the 300+ comments on that blog post, you will see that most of what he says is pure horse-hockey.
Lastly, YES…I’m a big believer that nutrition plays an ENORMOUS role in our health.
But getting back to your question about testing for gluten-sensitivity, I hate to see people waste money, waste time and be given a diagnosis that may not be accurate, so I did a little digging. And came up…frustrated.
There are some testing methods out there that seem to be supported by some in the medical community, but others say they are not to be trusted. For example, here is NFCA’s statement on NCGS testing: “Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted.”
So here is what I say: While I’m not sure if there is an accurate testing method for gluten sensitivity, I do believe the condition exists. You say your daughter was tested for celiac and it came back negative. Was she eating gluten at the time of the test? If not, the test results will not be accurate. There is also the possibility of a false negative. Did she have the endoscopy?
My best recommendation is to find a good GI doc who has a firm knowledge of celiac disease. They may be few and far between, but they’re out there. I’m not sure where you live, but perhaps you can find a celiac in your area on my forum and find a doc that way.
And if you run into a wall, simply take your daughter off gluten for a few months. Not kinda, sorta off gluten. But 100%. If her condition improves, you may have your answer.