Symptoms and Testing Question

[Wendy1994]

I have thought for years that I was lactose intolerant as I often had bloating and gastrointestinal issues after eating dairy.  I never put two and two together that I was typically also eating gluten.  This past year I have been experiencing tingling in my limbs and burning in my body that travels and is not consistently present, vitamin D deficiency, joint pain, and anxiety/depression.  The vitamin D was treated as was the anxiety but the joint pain and burning continues.  My doctor ruled out RA and Lupus and all of my other blood work has returned normal.  I had a celiac panel done and the Tissue Transglutaminase  AB, IGA was normal but my total serum IGA was slightly elevated (abnormal).  My doctor wants me to go gluten free.  My two questions are:  have others experienced these symptoms?  And, does anyone understand these results?  My result said no serological of celiac disease.  

[trents]

You may have gluten sensitivity rather than celiac disease. Currently, there is no test available to diagnose gluten sensitivity. It is a differential diagnosis. That is to say, if serum antibody testing and endoscopy/biopsy (to check for damage to the small bowel lining which is characteristic of celiac disease) are negative but symptomatically you still react to gluten then it is gluten sensitivity. But beware. Don't make the mistake so many do by beginning a gluten free diet before all testing is complete.

[Wendy1994]

Thank you so much for your reply!  My physician states I am done with testing and has not ordered any other tests.  Am I missing a test?  I started gluten free today. Should I call and request further testing?  What have others done?

[trents]

You will not know for sure if you have celiac disease vs. gluten sensitivity unless you had an endoscopy with biopsy as I stated above. It is not uncommon for serum antibody tests to be negative but the biopsy of the small intestinal lining to show the characteristic damage of celiac disease. However, the antidote is the same for both and that is total avoidance of gluten for life. So, if you want to know which gluten disorder you have you would need to ask for an endoscopy with biopsy after going back on regular amounts of gluten daily for several weeks. If it doesn't matter to you, then just start the gluten free diet and educate yourself as to where and how gluten gets into the food supply, particularly with processed foods. You will need to be careful not only to avoid gluten (wheat, barley and rye and their derivatives, e.g., "malt flavoring") as an ingredient but through cross contamination. Learning how gluten is hidden in terminology is part of this education. Where gluten is found in processed foods will surprise you. For example, read the label on a bottle of soy sauce and you will see it has wheat. Some chocolate syrup products have wheat starch as a thickener. Almost all canned soups use wheat starch as a thickener. And if you eat out at a restaurant, even ordering from their gluten free menu, you can get cross contamination from the kitchen staff cooking gluten free food in the same pots and pans that they used for food containing gluten and cutting it with the same knife they used to slice bread. Stuff like that.