Q. In one of your previous responses you mention that polycystic ovarian syndrome (PCOS) and celiac are related. I was diagnosed with PCOS for over 20 years and treated with BCPs and then Metformin. Meanwhile I’d suffered terrible bloating, chronically, for years, encompassing both lower and upper abdomen. I began to learn gluten may cause the bloating and PCOS symptoms, so I went off gluten and the meds simultaneously (without any clinical testing). I have had periods like clockwork since, and the bloating is greatly improved.

My questions are:

1. Without the classic celiac symptoms and diagnosis, is this most likely celiac or gluten intolerance (or do you think they are always one and the same)?
2. Why do people suggest that celiac be considered for “unexplained infertility,” as opposed to for all women experiencing infertility and other symptoms of reproductive hormone imbalance? (Similarly, now UWisconsin health clinics test all women with osteoporosis for celiac, not just those with “unexplained” osteoporosis.) So many doctors will just say, “oh, that’s PCOS,” therefore “explaining” it without really understanding it as gluten for so many of us. They have their “explanation,” ergo, no need to test for gluten! Talk about a “tip of the iceberg”? One practitioner states that over 80% of her patients with PCOS test positive for gluten issues. Is this a percentage you would expect to find in a well-designed formal study? If so, wouldn’t that be roughly 5% of women having gluten issues just from that symptom complex alone?

Thank you for any time you may find to address my questions. Unfortunately there appears
to be scant clinically sound information or studies concerning this.

A. To answer your questions:

1. Textbook celiac disease only accounts for about half of all those who cannot tolerate gluten. There are a number of genes beside the HLA genes that are associated with gluten intolerance.  Unfortunately, we do not know precisely their contribution to gluten intolerance. Thus, they are not one in the same as we cannot trace all gluten intolerance to the consequences of untreated celiac disease.
2. The second question can be answered by understanding that CD4 cells activated at the gut level by gluten can travel through the bloodstream to the brain where they can influence the secretion of hypothalmic releasing factors that influence pituitary trophic hormones and lead to infertility.  In addition, these activated CD4 cells also home to the endometrium, and can create local inflammation that can interfere with the implantation of a fertilized ovum.

Hope this helps.

Health and happiness,
Dr. Aron

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