Sharing My Story Isn't Worth It Sometimes

[fran641]

I have been going through different testing for months to identify some of my gut problems. Not the celiac blood work. Long story short a pill camera showed my damaged villi. Doc says go on the gluten free and see how you feel before my next visit. Sounded ok by me.

I want to put this kindly but not sure I can. I asked to share a gluten free communion host from a lady at church (she has a box already) because mine won't be in for a few days....bad move. I know she means well but the lecture I recieved about going to her doctor for the blood work or I just would never know anything for sure drove me nuts. I have been on the gluten free for 5 days already and things are calming down some with my intestines. I have no desire to go back on gluten to be tested some more.

This may go on for a while with her, she insists my entire family be tested. I know it's inherited, my adult children are not in a financial position to go have tests right now and have no desire to.

I just want to continue with the gluten free research and get my environment as safe as possible.

[Fiddle-Faddle]

Fran, this is almost funny!

You already HAVE the gold standard diagnosis: damaged villi. With a positive dietary response, you don't need more tests.

Most people who go gluten-free as a result of bloodwork are hounded by others who say they need an endoscopy!

As far as your children are concerned, they don't need a doctor's permission to try a gluten-free diet, especially if they can't afford testing. If they have absolutely NO symptoms, there might not be an immediate need for changing their diets, anyway. But if they have autoimmune problems, diabetes, thyroid, fibromyalgia, rheumatoid arthritis, lupus, etc., or if they have otherwise inexplicable symptoms such as being either overweight or underweight, ANY neuro symptoms (including ADD, autism, depression, bipolar, dizziness, Meuniere's disease, ataxia, etc), they probably should try a gluten-free diet and see if their symptoms improve.

My endocrinologist says that she is seeing gluten intolerance so frequently in diabetic patients, she is now routinely testing ALL her diabetic patients for gluten intolerance.

[ravenwoodglass]

I would get the info from a recognized celiac information site that she would respect like PubMed or the NIH (National Institute of Health) and keep it to give to her the next time you see her. Highlight where it says that the endo is the gold standard for diagnosis and thank her for her concern. Tell her you are aware of the strong inheritence pattern and have talked to your children and other first degree relatives. One of two things may have occured here, she could have stopped listening when you said you hadn't had the blood test or she may not be as fully informed as she thinks she is. Either way she was most likely trying to be helpful. I do hope she shared her gluten free wafers and I also hope they were really gluten free not just gluten light.

[fran641]

Thank you so much for your great response to my problem. This illness takes such a change to lots of areas of a person's life that it can leave you feeling slightly less confident at first. I have really tried to look at this from the first day as "OK, what CAN I eat" and started from there.

My children do not have any of those autoimmune symptoms nor do they have any serious intestinal problems. Maybe not YET.........but I am explaining this diet to them gradually, so I'm not avoided like the plaque.....thanks again.

[fran641]

Thanks for the website info Ravenwoodglass. She was meaning to be helpful and I will have something in my head and an article for next time. She caught me off guard. I too hope the host was gluten free but mine should be here this week.