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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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    • trents
      What should I do with these test results?

      By trents · Posted

      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 
    • Itsabit
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      By Itsabit · Posted

      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 
    • Jacki Espo
      SkinSafe

      By Jacki Espo · Posted

      I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash.  Good luck. Wishing you the best. 
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      SkinSafe

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      Reply to Jackie, Thank you. I have not been eating any oats at all, but I am aware of a possible correlation. And I already rarely eat out, and not recently. So, whatever this is, I’m doing it to myself, somehow. 🤷‍♀️
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