Years ago I wondered if I had celiac disease, and had doctors give me the basic panel which I was "negative" on. No one told me people can get false negatives. As I wrote here, I started going to a functional doctor. I told him, "Please find out why I have two different kinds of kidney stones and why so much else is wrong?"
He went deep into my records, even knew things about my abuse history, I think there was access to some counseling records and far more. He did very complete testing on me.
Another study tying HLDQ8 and Lipedema together.
He did some genetic tests on me. I wrote about MTHFR being a problem but I came out positive for HLA DQ8 which is a genetic marker for celiac disease. He told me he diagnosed me based on malabsorption, anemia, and other symptoms along with this genetic test. So it was the test and multiple other clinical signs. It is a bit more complicated for me to do the endoscopy and that. He said I had multiple signs of it.
I went on a gluten free diet, as of December 15, 2024. It is not easy but I have eaten gluten-free since then. I wanted to see if it would improve things. I probably will soon be getting some labs done to see what differences if any there has been, but some things have already changed!
For the first time since 2014, after one of my usual maintenance kidney scans, I have no kidney stones. There was always one or two hanging out in there. I don't get the usual number of small kidney stones like I did before either. Candidas went down by a lot. I can still get bouts of it, but they are far less in number. My blood pressure dropped to the point I had to go off a blood pressure med I have been on for years. My weight sadly has remained about the same. [491 a few weeks ago] I am a bit disturbed my weight is staying the same, we have had less food due to poverty and obviously a lot of foods have been cut out doing gluten free.
Other health problems have worsened, I am having some major muscle/mobility and pain problems probably related to my rheum disorders such as Dermatomyositis. This doctor diagnosed me with MCTD instead of UCTD too, which I think is a more accurate diagnosis. I had to see a PT for my neck, and they did neck X-rays that show degeneration in my bones and some narrowing of vertebrae, I still need to see my main doctor to explain this to me. I do wonder if celiac explains why I lost 4-5 inches of height by my 40s.
I will see where the gluten free diet takes me now. It is not easy to do with money problems but I have kept gluten free. There have been studies that there is more obesity in adult patients with celiac.
This gluten free eating sounds really good. I doubt I could do it because I can't stand now the gluten free stuff tastes. but yeah. Good Luck, I am glad you have a professional doctor.
ReplyDeleteThanks it is hard. He is still watching me. I did tell him there's been a lot less kidney stones, he explained that, it had a hormonal reason related to inflammation. Its not an easy diet at all. I guess we will see how I am doing a year in. [I can't get the biopsies done like some people do] I'm glad I have him to help. Thanks.
Deleteoh you have to toast all that gluten free bread to make it edible, LOL
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