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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

ccrew99

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ccrew99 last won the day on November 15 2015

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  1. 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!!!
  2. 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.
  3. POTS

    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.
  4. POTS

    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.
  5. POTS

    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
  6. POTS

    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 😊
  7. POTS

    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.
  8. 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??
  9. Does anyone's dh look like this?

    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 💖
  10. Does anyone's dh look like this?

    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 area. I've had Drs say eczema or herpes. My next step is to find a dermatologist familiar with dh. Thanks for the input.
  11. In Dire Need Of Help

    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 it to see if that seems like what you are going through and make sure you find a dr that knows how to diagnose and treat it
  12. 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 her immune system. So you really need to find a good dr that can properly diaganose gluten intolerance so that further testing can be done to see if any other systems are being targeted. Look up correlations btwn gluten intolerance and other autoimmune diseases. You will be surprised.
  13. 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 and have your adrenals tested.