This was a comment left on my post Benign Congenital Hypotonia (Low Muscle Tone) and the Gluten Free Diet. Celiac is so often missed by doctors, as it was with this child.
Hi and thank you for writing your post about Low Muscle Tone. Our daughter too has grown up with low muscle tone and was diagnosed with something called Ehlers-Danlos Syndrome. Just before turning five, we read what you wrote here about Gluten allergies and thought that you were writing about our daughter. Now 3 months later, she has been diagnosed with Celiac disease, something that her doctors chuckled about when we said we wanted to test for it. We have started with a gluten free diet now and hopefully she will be running and jumping like her 5 year old friends soon. Thanks again your your post. It pointed us in an entirely new direction that none of my daughter’s doctors could foresee.
MelissaBee - I have Ehlers-Danlos syndrome also, and now a new doc (of dozens I've seen over the last two decades) thinks I may have Celiac Disease as well (apparently this is more common among EDS sufferers). Tests thus far are inconclusive, but given my many vitamin deficiencies and generally miserable health, it looks like a gluten-free diet is in my future. Unfortunately, I'm a vegetarian as well, so that will make for even more of a challenge. I try to restrict dairy and eggs, though I'm not totally vegan. I never thought about eliminating soy, though I have considered making my own tofu/soy milk, given the overly processed nature of most soy foods available.
If I ever recover from this severe exhaustion, I look forward to trying out some of your recipes. I used to love to cook, but now I'm just too $#@% tired! But just the thought that others have overcome this nightmare gives me hope. Thanks for publishing this site.
Melissa