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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About thleensd

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    1. thleensd added a post in a topic Long Island Medium Episode Tonight: She And Her Daughter's Pediatrician Are Ignorant!   

      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.
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    2. thleensd added a post in a topic Homeopathic Remedies.... Having Big Time Cognitive Dissonance   

      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!)
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    3. thleensd added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Dr. Terry Wahls Protocol
      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) :
      • 1 reply
    4. thleensd added a post in a topic Feet Hurt And Twitch When Eating Wheat ,but Not All The Time   

      Why did your doc say to go gluten free?

      "doctor, it hurts when I do this!"
      "don't do that."
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    5. thleensd added a post in a topic What Do You Do At A Wedding?   

      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!
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    6. thleensd added a post in a topic Hormones, Specifically Menstruation   

      It's pretty common for your hormones to get messed up. How old are you?
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    7. thleensd added a post in a topic Homeopathic Remedies.... Having Big Time Cognitive Dissonance   

      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. ;-)
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    8. thleensd added a post in a topic Homeopathic Remedies.... Having Big Time Cognitive Dissonance   

      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!).
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    9. thleensd added a post in a topic Gluten Dinner Party   

      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......
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    10. thleensd added a post in a topic Hairdressers Anyone?   

      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!
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    11. thleensd added a post in a topic Pressure Hives Now? Can't Take Much More   

      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.
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    12. thleensd added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Homeopathic Remedies.... Having Big Time Cognitive Dissonance
      I haven't been on for a while, but I wanted to throw a topic out and hear your thoughts.
      I am, in general, a rationalist. I believe in science and evidence - but I also know there are things we don't understand yet and I'm open to that. For example, I feel better after acupuncture. I don't know that it's for the same reasons my acupuncturist says it is... but it seems to work, so I go sometimes. I don't want to bring religion or politics in to the discussion, but lets just say I require supporting evidence. 
      I have come to distrust most MDs. I've had terrible experience upon terrible experience with doctors who know less about my conditions (Celiac, complex migraine, others) than I do. I have been in the driver's seat with my doc, doing the research myself and asking for tests. It's been working, but I've hit a health plateau. 
      After a year on the GAPS diet, I'm much better... but still no where near 100%. My condition has now been dubbed Chronic Fatigue Syndrome. I have debilitating fatigue, and neuro symptoms have increased. It does not appear to be MS or Lupus or Fibro (but lots of overlapping symptoms at this point). I've had MRIs, blood work, thyroid...all the tests that are recommended. Only abnormalities: low iron/ferratin (old problem) and *slightly* low on one of the white blood cell types. Vit D is "normal", but low for where I want it. 
      One of my friends had an amazing experience healing with a Doctor of Osteopathy about an hour away. I got on the waiting list, and have now seen her 3 times. 
      The good things: 
      -She has re-aligned by body and cured 85% of the physical issues (pain, mobility) that I've been working with physical therapists and chiropractors for years
      -She seems to really "get" the gut thing and has me on a slightly modified version of GAPS. Still grain-free, big on probiotics. I trust her nutrition and diet advice. It is aligned with what I've read and experienced. Although I get to eat a potato once in a while now. YAY.
      -She has me on some natural supplements that have increased my energy slightly. 
      -She seems very optimistic that I can recover 100%
      The sketchy things that really make my eyes cross (and the reason for my post):
      -She did live blood testing - which I found truly fascinating. I loved being able to see my cells and other *stuff* in my blood. However - quack watch and other sites say it's BS. She pointed to some groupings of cells that did NOT look like the lovely red blood cells or goofy white cells you see in pictures and told me I have "mycoplasma". I've spent some time researching that and have mixed feelings. 
      -She used this other crazy machine (even she admitted it was crazy sounding)  - EAV testing. Also huge red flags/quackery on quack watch. BUT - the machine flipped out in two specific places and I don't have an answer for that. She let me play with it a little and answered the questions I hurled at her.
      -She uses homeopathic remedies - I just started taking them. I DON'T BELIEVE they will work. But I'm taking them anyway (!!!) because: 1)  my friend got better under the care of this doc 2) no negative side effects that I know of (unlike most pharmaceuticals - I've had awful experiences) 3) I have no idea what the #*!! else to try. At this point, I'm ready to hike a volcano, burn effigies, witchcraft, voodoo, medicine man, pray to every god created...because I don't know what else to do! I've spent THOUSANDS of hours researching and trying to get healthy. I will not give up.
      A note about these specific homeopathic remedies. They are low (?) dilutions - some have been diluted to only 1:100 or 1:1000 .... so it's not like the grain of salt in a swimming pool that some are.
      -She also said she thinks I have Coxsackie virus (that is chronic/never cleared). When I first got sick pre-diagnosis, I had a nasty illness that hit me hard. I missed a month of work. It wouldn't surprise me if there was SOMETHING like that wrong with me (the way Lyme Disease or Epstein-Barr hits some). No one has been able to figure it out.
      Thoughts? Anyone have any GOOD experiences with alternative/complementary medicine/doctors? I'm sure some of you will want to wave your BS flag - and that's fine, too... but I would love to hear if anyone has positive stories. 
      Thanks for reading this far! =)
      • 12 replies
    13. thleensd added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Going To A New Doctor Thursday
      *Eh. I put this in the wrong place. Guess I forgot how to use the board. Should probably be in the "coping" section.*
      I haven't been on the board for a long time...maybe a year. Looking for some support, I guess.
      It's been four years since I was diagnosed, and I'm still not doing all that well. I've pretty much given up on my mainstream's just frustrating every time I go. I've been on the GAPS diet for one year. It has helped, I've been able to do more, but I can still only work a few hours each day, and my body is still doing some whacky things. Mostly, it's the fatigue that gets me down. That, and I have some chronic pains that haven't gone away yet. Lots of other typical things you read about from us non-standard symptoms people. 
      Anyway, I've made an appointment to see a D.O. ...out of pocket - she doesn't take insurance, and she's not cheap. They booked me SIX MONTHS ago. She really helped out a friend of mine, so I'm hoping for a similar experience. She's an hour away - not terrible, but will definitely take a chunk out of my day and energy to get there.
      ...I'm trying not to put all of my eggs in one basket, but in all honesty, I'm going to be distraught if she doesn't have any new ideas for me. 
      I'm nervous, excited and my usual insomnia is even worse. I've had a support system here to help me, but circumstances have changed, and I'm feeling quite alone. There are people around... but you know how it is - you can only talk about your health so much. I am already the first to leave at social events, and I don't want to be Debbie Downer or be getting *that* kind of attention.
      So, yeah. Wish me luck. Trying to keep my chin up no matter what.
      • 1 reply
    14. thleensd added a post in a topic Dh, Histamine And Skin Pressure   

      I know this is a few months old, but I'm looking through to see other people's histamine comments.

      Years ago I was diagnosed with "chronic idiopathic urticaria and angioedema" (hives and swelling - unknown reason). I also had dermagraphia... The swelling was actually a delayed pressure reaction. Look up pressure urticaria. It is well-known.

      From what I can tell, if your body is in a place where histamine is overactive, this is one of the possible reactions. Not in your head at all! =)

      I'm trying to find info on healthy gut bacteria and histamine... that's the research road I'm going down. It seems a healthy, balanced gut will fix so many things! Now...... how to get there!?!

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    15. thleensd added a post in a topic Balance And Falling   

      What a great conversation. It's nice to have people to relate to! So many "atypical" issues here that are simply "just" Celiac. I feel like I'm always looking for more answers to fix my fatigue, aches, brain fog... I will continue to do so, but more than likely what I need is time-time to eat good, nutrious food. Time to rest. Time to understand my body and know that "more exercise to get in shape" isn't always the right answer! Some days I can only walk a few minutes at a time. Others more than an hour!

      Last night I was teaching/directing my Tuesday night music group (adults)... There was a point in time (happens periodically!) when I just couldn't make my mouth say what my brain wanted it to! Fortunately, they've seen it before and we can generally just laugh about it. It's like oral tongue and lips just can't quite get their balance. (yes, I just made that up!) It's funny because most of them are at least twice my age, yet we have many of the same body-is-betraying-me type of experiences. In my case, however, I'm VERY hopeful that it is a temporary condition. What a painstakingly slow process recovery is for some of us!

      And on that thought... Never ask the universe for patience. It just may give you the "opportunity" to develop it.

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