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Ehlers danlos, POTS, Lipedema, and Celiac

JustAchronic

By JustAchronic
in Related Issues & Disorders

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JustAchronic Newbie
JustAchronic
Posted

Hello, I'm wondering if anyone else out there has any of these other conditions? I've been on a long road of feeling unwell off and on for much of life starting in my teen years. My celiac testing is pending. It was mentioned by my rheumatologist after learning my vitamin d has been very low for over 10yrs despite supplements and rx vitamin d. I'm obese so I never thought to think celiac. I always felt better giving up carbs but couldn't be consistent for very long. 

So I didn't like my rheumatologist until this last visit. Upon meeting him he talked over me, cut me off in mid sentence and the takeaway was that all my joint, connective tissue pain, inflammation was because I'm fat and need CPAP. I had a recent sleep study and was ready to embrace the CPAP.  I was also pending a neurologist consult for MS symptoms and a lesion in brain. I started Cpap and it created more problems and I felt more tired, coughing all night and removing it before morning then being unable to wake up. The neurologist ruled out MS. Thank GOD! The rheumatologist also snickered at me for mentioning EDS with my hyper mobile joints. Well, when I returned to him my 46 year old sister had just had a heart attack due to SCAD which is linked to vascular EDS. Now he was engaged on the topic. 

I'm racing down the rabbit hole, typical me. So I'm wondering if all things lead to celiac and if there is a connection with leaky gut syndrome and if those two things have an impact on EDS, lipedema, arthritis, POTS, Mast cell activation syndrome, MS symptoms ect? 

I have cut gluten out after getting my lab work. Interestingly its early, only 3 days off gluten but also adding in RAD diet and leaky gut diet to.  I've lost 5 lbs in 3 days and my fatigue is improved slightly, my pain is slightly improved as well. So I guess we'll see what test shows but I'll likely avoid gluten either way. 

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trents Grand Master
trents
Posted
(edited)

Some of your symptoms certainly could be tied to celiac disease. But a word of caution here. If you decide to have an endoscopy/biopsy to check for villi damage of the small bowel (the gold standard for dx celiac disease) you would need to go back to eating regular amounts of gluten for at least 2 weeks. And I hope you did not start eating gluten free prior to your antibody test. For that one, you should have been eating regular amounts of gluten for at least 6-8 weeks for the results to be valid.

Do you know what antibody tests were ordered. Many doctors will order only the tTG-IGA test instead of a full celiac panel.

And welcome to the forum. 

Edited by trents
JustAchronic Newbie
JustAchronic
Posted
  • Author

I did eat a regular diet before the blood draw and my tTG-IGA came back negative today but I feel better off the gluten and I'm not sure I would want to proceed with a biopsy. 

trents Grand Master
trents
Posted

You could have NCGS but I have a feeling you have other autoimmune problems going on that may be unrelated to gluten.

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