I realize that telling people to go get tested privately with poop tests of saliva tests does not endear me to any gastroenterologists. I understand their concern about getting a person properly tested and biopsied.
The problem is that getting someone to order a test for you is not so simple.
I would love to tell you that when I marched my pot-bellied, skinny yet eating like a teen on swim team, greyish, moody, anemic, delayed toddler into the doctor’s office complaining of utterly bizarre bowel habits that they said, “Oh my goodness, he has every single symptom of a textbook pediatric celiac patient…we should get him tested for celiac disease”…but actually none of the first SEVEN doctors we saw suggested it. It was mostly about talking to me in that soft voice they use on “crazy people” who can’t accept their child’s “autism”.
He had every symptom and not one doctor suggested celiac.
The person who hinted at it was the nutritionist who I saw to figure out if a proper gluten and dairy free diet might help his “autism”. But then I had to get in to see the pediatric gastroenterologist which meant six more weeks of waiting and letting him stare into space. So I took him off gluten and dairy and ordered some off the reservation tests.
Which came back wildly positive for gluten and dairy intolerances.
And when we finally got in to see the gastroenterologist her test results were similar. But she would not biopsy him unless I fed him gluten every day for 8 weeks. He was a changed happy child. How could I cause a three year old pain like that? I already had my answer.
So I got to look at a binder of coping techniques and was promptly fired as a patient.
And he is not an isolated case. I was as textbook as he was. The pot belly that never went away. Numb hands and feet, poor visual motor coordination, unexplainable difficulty getting pregnant, the ability to eat three pounds of fried chicken with fries and Wonder Bread for dinner night after night with no exercise…and no weight gain. IBS.
No one suggested it for me either.
And my mom who has a first order relative with the gene (me), osteoporosis and Hashimoto’s was told by her endocrinologist that she “doesn’t need the test”.
So gastroenterologists, PLEASE talk to the endocrinologists and the psychiatrists who see most patients first. Talk to the family doctors and the pediatricians (we love the one we found eventually) and let them give you referrals so that we can be tested properly.
Until then, we are going to Enterolab and their competition. We can’t wait any longer.
If you want the business giving us biopsies, talk to all the other medical specialists, and please tell them that it is not all in our heads.