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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

thleensd

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thleensd last won the day on October 21 2013

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  1. Pikakegirl - good luck with your cardiologist appointment. It's really amazing that we have to push so hard to get answers, but I hope you can find some more! SVT isn't uncommon for people with POTS...they can certainly co-exist, but that often makes diagnosis challenging. Please make sure that you ask them to take your pulse and BP lying down and standing. I'm not sure how much you've looked into POTS, but in case it helps, the diagnostic criteria is a heart rate increase of 30 BPM when going from supine to standing (in absence of a large drop in BP). If BP drops, it might be orthostatic hypotension instead. Also, the nerve pain and joint problems - have you looked in to Ehlers-Danlos Syndrome? Obviously there are many, many things that it could be, but EDS does tend to cluster with POTS (and often falls in to the "I was diagnosed with chronic fatigue which ALL of my symptoms are now attributed to" category). I was also diagnosed with that at the same time (hypermobile type)
  2. I do appreciate your clarification, although I will say that if your POTS can be fixed by a tablespoon of soy sauce, it was not true POTS in the first place. Dysautonomia is a big deal. Sodium can help some with low blood volume or low blood pressure in some people, but let's not recklessly throw around advice. It's like saying a mild case of celiac can be cured by cutting back on gluten.
  3. Not asking for advice. I've done thousands of hours of research on health in general - hundreds and hundreds in dysautonomia and POTS, I have a leading doctor, and am taking in 10 grams of salt per day (as recommended), and am not yet well enough to take care of myself, so I'll be starting medication soon. It is frankly insultingly naive to suggest that a tablespoon of soy sauce could make me feel better.
  4. Looks like I haven't been on here for about 4 years...hoping the next chapter in my story will help someone along the way. I was diagnosed with celiac disease by biopsy in 2009 after a number of years of trouble. I carefully nixed gluten, then went paleo, then went on the Wahls Protocol - each with some improvement, but never enough to return to "normal". I was diagnosed with Chronic Fatigue Syndrome/ME and stopped looking for answers (other than continued reading, refinement and dietary adjustments). I was starting to do pretty well - traveled internationally, was starting to hike regularly when I became increasingly fatigued, dizzy, light-headed again...but mostly only in the morning. Symptoms crept later and later in the day until finally over the summer I really crashed. I felt like I was going to faint every time I stood up for more than a few minutes - it was scary, but familiar to pre-Celiac-diagnosis. Interestingly enough, early on, most of my symptoms were neurological: ataxia, brain fog, memory problems, nerve pain, etc as well as debilitating fatigue. I had a few near-fainting experiences here and there, but it was attributed to malnourishment, low blood pressure, CFS, and yes..."anxiety". I found a new functional medicine doctor who led me down another research path...thyroid...no...adrenal fatigue... maybe, but no clinical markers. Then I found it - thanks to the internet (which I also attribute to finding celiac disease). In addition to Celiac Disease, I have POTS. Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. In essence, for some reason (autoimmunity? low blood volume? general dysautonomia?) not enough blood pumps to our vital organs, so our hearts race to try to compensate when we stand up (sometimes when we sit up). Those are the main features, but, much like Celiac Disease, there are lists and lists of additional signs and symptoms. I found an expert (such as there are, there is no cure, only treatments - and it was only a named syndrome starting in 1993, so it's a young syndrome) and finally got an appointment last week. Now to start the long road of pharmaceuticals (ugh), lifestyle interventions, and anything else we can find so I can feel better. Here are the most troubling symptoms I went through that my doctors dismissed as "just CFS" or "Celiac complications": Dizziness, lightheadedness, light and sound sensitivity, fatigue, cognitive dysfunction (brain fog) digestive disturbances, too much adrenaline (and not at appropriate times), and of course, an inappropriately high heart rate upon standing. I also had related issues (which are explained by the related diagnoses of Ehlers-Danlos Syndrome (hypermobile) and MCAD/MCAS (mast cell activation disorder/syndrome). Those included: joint and nerve pain, loose joints, chemical sensitivity, a history of chronic idiopathic urticaria (hives) and angioedema (swelling). Turns out that POTS has it's own little constellation cluster of illnesses that like to coexist with it: celiac disease, lupus, MS, sjogrens, EDS, Lyme Disease are some of the most common) It turns out that Celiac Disease can trigger POTS! If you're having unexplained orthostatic intolerance in spite of not much change in blood pressure upon standing, check your heart rate. None of my doctors ever thought to check my standing heart rate, and the only irregularities were attributed to anxiety. Dysautonomia isn't fun. But, having a diagnosis can hopefully lead to some treatment options. Here's a great short video about POTS.
  5. This made me SO irritated!! The doctor asked her how often she poops (1/day), how much it hurts (3/10) and palated her belly. Then he said celiac disease is currently a fad and told her she was fine. Seriously?!?! Wtf?! No blood test, no referral... Not even "try it and see..." I hope they get flooded with complaints.
  6. So, I stopped all of the supplements and remedies after having severe numbness in the right side of my body for days. It took about 5 days off of everything for it to go away. I will continue to see her for body adjustments since I've had FANTASTIC results from that. I'll need to do some more personal research to decide which supplements I'd like to try again. Meanwhile, I'm looking into expanding my nutrient rich diet. (I just posted about the Wahls Protocol - check it out!)
  7. Are any of you familiar with and/or trying the Wahls protocol? Dr. Wahls is an MD with MS that is treating herself through diet. Her story is incredible, and I think has great implications for Celiac Disease and other autoimmune disorders. Her TED talk is here: After limited recovery going gluten free, I went Paleo and started improving. I started the GAPS diet, and got even better, but not yet 100% Maybe 60% (fatigue, pain, brain fog). I started seeing a great D.O. and have added in limited potatoes and raw milk. I'm doing better... but I noticed when I don't eat enough greens, I don't feel as well. My DO has also greatly limited my daily sugars (no sweeteners, and only some fruits - mostly berries) Enter Wahls protocol: Grain free (she's also dairy-free), mostly legume free (very similar to gaps), but her focus is on getting nutrients through diet. Each day, she advocates three cups of leafy greens, three cups of sulfur-rich vegetables, three cups of bright colored foods. In addition to that, grass fed meats, wild fish and healthy fats. She also advocates eating organ meats once per week and seaweed once per week. Of course, probiotics and ferments as well. She's on-board with many of the GAPS/Weston Price ideas. I'm experimenting with tweaking my diet to bring it to this level. I'm doing pretty well with the veggies and greens (although my low energy days are made worse when I don't have energy to make more!). When I eat this way for a few days in a row, I feel great. One thing I'm having trouble with is the organ meats. Grass-fed, organic is pricey and hard to find. Considering mail-order. I'm admittedly a bit scared by organ meats. Simply fear of the unknown, I know. I need to work that out. Also, I have trouble finding good fish that isn't $$$$. Fish in the store is notoriously mislabeled. Not going down that conversational road right now! One thing she doesn't talk about is nuts. I'm currently cooking with (soaked, dehydrated) nuts... and some raw ones too - almonds and walnuts only, as well as sunflower and pumpkin. She also doesn't talk about eggs, but my DO wants me eating plenty of those, which I'm happy to do. I'll return and report as I can... meanwhile, have any of you tried this? Anyone interested in trying this? For those of you that are super food science nerds like me (like I've become because of Celiac!), here is an expanded lecture by Dr. Wahls (complied on a paleo blog - scroll down) : http://paleozonenutrition.com/2012/02/08/a-new-experiment-dr-wahls-super-nutrient-paleo-diet-9-cups-veggies-a-day/
  8. Why did your doc say to go gluten free? "doctor, it hurts when I do this!" "don't do that."
  9. I don't trust anything at an event like that. Eat before you go. Being food. Ask if you can have a clean plate and eat your own food. People may ask, but give them a quick explanation and move on!
  10. It's pretty common for your hormones to get messed up. How old are you?
  11. I've enjoyed reading all of your thoughts. Some really weird shifts happening in my body now... Some good, some not so good. Cutting doses in half. People have been telling me I look really good, so that's a nice change. The numbness/neuropathy I've been dealing with lately has been the most disconcerting. MD's just want to run another MRI. The body is a pretty crazy "machine". I do enjoy learning how it all works. Too bad I'm not getting paid for that. ;-)
  12. Hey Irish! Nice to hear from you. Glad to hear you're doing a bit better. Yeah, I've read all of that about the live blood tests, etc. It's frustrating, because I really like the other stuff this lady is doing (body work, supplements, nutrition, appropriate exercise program). I told her up front I didn't believe in the stuff. Ha. I wonder if she'll work with me on my terms... Like let me pick and choose the part of treatment I want. It's just hard to know which parts to trust when she's done such a good job with half of the treatment, but lives in looney land part of the time. I still think she's more sane than at least 90% of the MDs I've seen. o.O There are some AMAZING controversies in the chronic fatigue community. But, so many people have been through similar journeys (Many doctors, "it's all in your head"). By the way, while I'm obviously far from better, I am now working 2-3 hrs most days and prepping 80% of my own food, driving, AND from time to time am able to put in full long day of activity (as long as I can prepare/recover). Trying to have balance and not over-do (too often!).
  13. SO sorry to hear this. He has NO IDEA how horrible he is being. ...look into separate kitchens (whatever that means to you) if he won't get gluten out of the house......
  14. Some hairsprays DO contain gluten. As do other styling products. I've been going to the same stylist for years...and he knows to not use any unapproved products around me! Bring your own if you have to!
  15. Pressure urticaria is a real thing! But.... as your body heals, it may lessen as well. Inappropriate histamine responses = hives. This may be a long shot, but you may want to look up histamine intolerance - cutting back (not necessarily eliminating) certain foods may help. Or your immune system is still just freaking out a bit. Hang in there, and keep the heavy bags off of your wrists. Take the offer of "need some help to your car?"... the bagger kid could probably use a walk anyway.