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ccrew99 last won the day on November 15 2015

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About ccrew99

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  1. 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 muscles to paralyze or work less than they should which causes delayed gastric emptying. This caused chronic 24-7 nausea for years along with occasional/frequent vomiting. It’s miserable. So keep researching and talking with others here on the forum to see if anything matches up. There are a lot of good info and informative people on the site.
  2. ccrew99

    Celiac tongue?

    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.
  3. ccrew99

    Constant aches and anxiety

    How long have you been off gluten?
  4. ccrew99

    Please Respond To DH Question

    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.
  5. ccrew99

    Please Respond To DH Question

    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. Sorry for the late response.
  6. ccrew99

    Sensitive Extremities

    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
  7. ccrew99

    vomiting ALL foods with celiac??

    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 be done for this done by GI. You have to eat something while being x-rayed/scanned, takes about 4 hours.
  8. 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. That being said I was deathly ill for a few years even after going gluten free. I finally got diagnosed with POTS , which is what has made me the sickest. I had many of the symptoms you did and also started to believe I was getting MS. Scared the H out of me. I really don't have a lot of answers but I really believe that having "celiac" for so many years undiagnosed cascaded into this. I have severe problems with muscle cramps, pulling and not healing plus many many more symptoms like the ones you described. I would definitely stay off gluten bc staying on it could make things worse and you may end up with more problems. Check out POTS and see if you relate. I never had severe Celiac symptoms like other people but learned that some of us don't. So just bc you don't really feel any different off of gluten doesn't mean that it wasn't doing damage. I think you have enough evidence to prove that your body doesn't like gluten so I would stay off!!! Don't give up!!!
  9. ccrew99

    Angular Cheilitis

    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 amounts) until I got my b's up. Now I'm not a doctor and that may be really bad for you but it worked like a charm for me. At that point I was desperate for relief and it can take time to get your immune system going again. I had also read it can be yeast infection but anti fungal didn't work like the anti bacterials.
  10. ccrew99


    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 and that is called gastro paresis which is very common in POTS. That's part of what made me so sick. He determined I had it severely by having meat under an x-ray scanner for 4 hours. So it doesn't just affect your blood pressure and heart rate!!!! But the increased heart rate on standing is a great sign they look for when diagnosing POTS. Every part of my body has been severely impacted by POTS and I know many many people aren't getting this diagnosed. I'm so so sorry for you having to go through this but hang in there!!!!! It took 3 trips to the ER and countless Drs and no one had a clue. I felt like they were just sending me home to die ? I go to the HeartBeat clinic in Dallas but I know that link I posted has a list of POTS docs as well.
  11. ccrew99


    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. With all that said I don't care about test results if you know how gluten makes you feel, so just stay off of it if it makes you feel bad ? My POTS still hasn't fully resolved yet and I've been off gluten for about 2 years now so I'm really not sure if they are connected. I just know I have both. The dr I see is a POTS specialist and has explained to me that POTS isn't its own illness but is caused by something. I did a month long of testing and he could never identify where mine was actually coming from. So needless to say I was never really able to treat it. I just learned what my triggers were and stayed away from them . That link I posted has good info in it and discusses the main culprits of POTS . You may need to research that link and you may be able to identify with one of the causes.
  12. ccrew99


    http://www.dysautonomiainternational.org/page.php?ID=30 this is a forum I used to navigate POTS and it has some really helpful info and lists of POTS Drs
  13. ccrew99


    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 to determine if one is causing the other. I really think you should have your adrenal glands checked as well. I have researched over the last few years trying to figure out what happened to me and I have read numerous things about co morbidity illnesses with celiac such as adrenal problems and POTS and several other issues. I'm not ? on what actually happened to me but what I believed happened was having Celiac untreated for 30 something years started damaging my adrenals and POTS symptoms came from that. Anyway there is a lot of digging you need to do but yes it sounds like you're experiencing the same stuff I did and the common denominator for both of us is Celiac. Oh! Be super super careful with exercising right now if you truly feel it's POTS, it can make things a lot worse. My POTS doc gave me strict regimen to follow so I would advise you to research it before you do anything. If I even mildly did too much I would be bed ridden for 2 days. I will try to send you some links and my dr info ?
  14. ccrew99


    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 to the POTS. But to answer your question I did not just get POTS while the gluten challenge. At the time I was so sick I didn't even know I had Celiac yet. So I think it can happen anytime.
  15. ccrew99

    Iodine test

    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??