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ccrew99

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ccrew99

  1. ccrew99
    How long have you been doing this? And what kind of creatine( capsules, brand)?
  2. ccrew99
    When I found out I had celiac I also got diagnosed with POTS and gastoparesis around the same time. I’m not sure which one started what but that’s what I got stuck with. If you have had celiac for a long time without knowing it can lead to a cascade of other heath issues. One point I need to make is that the gastroparesis actually causes the stomach mus...
  3. ccrew99
    I used to get that as well. Don’t seem to get it anymore being gluten free, so I could see a link for sure. It could be from vit. deficiencies from celiac or just be from celiac.
  4. ccrew99
    How long have you been off gluten?
  5. ccrew99
    The only thing that looks like that and itches is DH in my mind. You can still have breakouts even if your gluten free, I have read several others on the show forum saying that. I’m not sure anyone really knows why. You could have ingested gluten and iodine somehow. Remember I’m no expert, but that does resemble how mine comes up.
  6. ccrew99
    It does look like how mine presents. It also has a stinging itch- severe itch and takes about 2 weeks for it to finally heal. Sometimes turns purple in color and leaves a colored mark but eventually fades away. Mine also come back in the same place and on the adjacent side of the knee. I have been gluten free for about 3 years so it does not come up anymore...
  7. ccrew99
    I got diagnosed with POTS after celiac diagnosis. I get Raynaud's phenomenon, muscle cramps/spasms, and had hives for a year and half. I'm not sure if there is any correlation between the symptoms but a lot of celiacs have multiple issues
  8. ccrew99
    I ended up with gastroparesis which causes delayed gastric emptying. Look into this as well. I ended up severely sick with this , not sure if celiac caused this but I have both. Chronic nausea and vomiting. Can not take any medications/supplements bc they do not leave my stomach quickly enough and build up toxicity very quickly. There is a test that can...
  9. ccrew99
    I understand how you feel. I wasn't "officially diagnosed" celiac but had enough evidence that my docs and I put 2 and 2 together due to what we conconcluded to be DH, plus a gene test and positive blood work. I never did biopsy bc they said the ones with DH have a harder time getting diagnosed and I had enough proof for myself to never get back on gluten...
  10. ccrew99
    Yes. It's awful!!! It was when I was deficient in b-12 but what I found out was that its not actually a symptom of b-12 deficiency but more so it's that your immune system can't fight off the natural bacteria in and around your mouth. I'm a dental hygienist and that made perfect sense to me. So I actually put neosporin on the corners of my mouth (very little...
  11. ccrew99

    ARCHIVED POTS

    ccrew99 replied to Feeneyja's topic in Related Issues & Disorders

    But yes POTS can make you feel terrible!!! It's not just when you change positions, it's that your brain isn't sending the right signals to your heart(nervous system) at the right time so you aren't getting adequate blood supply to various parts of your body. If you are nauseated and have a hard time eating your stomach may not be getting the blood it needs...
  12. ccrew99

    ARCHIVED POTS

    ccrew99 replied to Feeneyja's topic in Related Issues & Disorders

    I think if the gluten challenge started these symptoms it's a safe bet to say you definitely need to stay away from it regardless if testing negative. I have the dermatitis herpetiformis part of celiac( if they are still saying it's related) so I never had a lot of stomach symptoms like the rest and have been told it's hard to get a positive test result....
  13. ccrew99

    ARCHIVED POTS

    ccrew99 replied to Feeneyja's topic in Related Issues & Disorders

    Open Original Shared Link this is a forum I used to navigate POTS and it has some really helpful info and lists of POTS Drs
  14. ccrew99

    ARCHIVED POTS

    ccrew99 replied to Feeneyja's topic in Related Issues & Disorders

    That definitely sounds like POTS. Same symptoms for me as well. I just happened to get lucky finally and was sent to a POTS dr here in Dallas. From what I have read they are hard to find . It took many Drs and misdiagnosis after misdiagnosis sadly. Salt definitely helps. Interesting though a lot of POTS symptoms and adrenal symptoms are alike, so it's hard...
  15. ccrew99

    ARCHIVED POTS

    ccrew99 replied to Feeneyja's topic in Related Issues & Disorders

    I got diagnosed with POTS back in November. I had already been gluten free for about a year and half prior the POTS diagnosis. It was POTS that made me so sick for about 3 years and went undiagnosed until this November. I also had adrenal problems so it is my speculation that I had undiagnosed Celiac for so long that it damaged my adrenal glands which led...
  16. ccrew99

    ARCHIVED Iodine test

    ccrew99 posted a topic in Dermatitis Herpetiformis

    I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
  17. ccrew99
    Thank you so much for responding, it's so hard to go on this journey of questions and Drs. I really appreciate the time you took to respond. God bless you ?
  18. ccrew99
    It starts as a piercing itch and the skin turns reddish with a few tiny red bumps. Then tiny watery vesicles appear and itch like crazy. The whole process from start to finish is about 3 weeks and the lesions leave a purplish skin tone and scab. I get them on the back side of both knees near the bend. Sometimes it's just a few scattered vesicles in the same...
  19. ccrew99
    Open Original Shared Link Open Original Shared Link
  20. ccrew99
    Open Original Shared Link Open Original Shared Link
  21. ccrew99
    You need to have your adrenal glands checked. I was diagnosed with celiac after my adrenal glands started to shut down. Since then I have met at least 3 others that had the same thing happen. It was missed 3 times in the hospital, for some reason the adrenals often get missed. It sounds like the latter stages of hypo adrenalism, not adrenal fatigue. Research...
  22. ccrew99
    It is very important that you test your cortisol levels 4 times a day bc it fluctuates significantly throughout the day. Also aldosterone levels need to be checked. But yes it definitely sounds like you are affected by gluten and untreated can cause other parts of your body to be effected. my sister in law had undiagnosed celiac as well and it started affecting...
  23. ccrew99
    This seems to sound like your adrenals have been affected. There is a significant correlatiom between gluten intolerance and adrenal burn out. I was sick the last 2 years and was diagnosed with adrenal exhaustion caused by untreated celiac disease. I had and still have the exact symptoms that you describe. I strongly urge you to research adrenal exhaustion...
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