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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 KnightRobby

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    • Birthday July 23

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    • Gender Male
    • Location AZ

    KnightRobby's Activity

    1. KnightRobby added a post in a topic Celiacs Need Their Own Ice Bucket Challenge   

      Anyone have any thoughts on this?  Because you would want everyday normal items to be used.  The big thing that helped the ALS ice bucket challenge was the fact it started with celebrities for exposure.  
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    2. KnightRobby added a topic in Celiac Disease - Publications & Publicity   

      Celiacs Need Their Own Ice Bucket Challenge
      I am sure by now you have heard of the ALS Ice Bucket Challenge.  It was created by a social media mastermind and has raised billions and billions of dollars for the disease.  So I would think ALS could see major improvement in diagnoses and treatment in the next decade.  So I was nominated by my communities to do the ice bucket challenge and took the time to mention Celiac (video below and it gets weird - I sure hope you know something about HowToBasic  ).  I may revisit the topic later with my community as well.  Here's the vid:

      Once the ice bucket challenge wears off, in about a year I would love to see Celiac get something like this.  Diagnosing Celiac here in the US is terrible (at least from my personal experience).  From what I understand places like Italy have it in place to test before age 7.  We need something like this badly.  I was diagnosed very late.
      It seems like everyone and their neighbor knows what ALS is now.  I want that for Celiac!
      • 2 replies
    3. KnightRobby added a post in a topic Flying And Travelling With Celiac And Hotels, Etc   

      Okay great.  Thank you all for the info.  I'll have to look up those GoPicnic lunches.  I've never heard of them until now.  Too bad options are limited when taking stuff on the plane.  That's the real pain in the butt to be honest, but it is what it is.
      And yeah, I have a friend in Sweden and did some homework on Celiac in that area.  I guess they had a major epidemic in the 70's.  They managed to reduce the amount of children getting Celiac by changing the formula they were fed when babies and reducing Gluten foods.  Anyway, definitely worth reading up on imo.  Seems like scientists can learn a lot from Sweden and their outbreak.
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    4. KnightRobby added a topic in Gluten-Free Travel   

      Flying And Travelling With Celiac And Hotels, Etc
      Hey everyone.  Hope you all are doing well.  I run 2 networks that are becoming quite successful and have been doing them from home.  I have been told it is highly likely I will be flown out to San Francisco and Sweden in 2015.  To be honest, I hardly have traveled, which is something I regret but it has been primarily because of my crappy health.
      I would of course have to stay in a hotel.  Anyone familiar with traveling inside and outside of the US or even Sweden when dealing with Celiac?
      • 13 replies
    5. KnightRobby added a post in a topic At A Loss; Constant Stomach Pain Continues   

      It might actually be the milk that could be making everything worse.  I will try without it for a few weeks and see how I do.  I am thinking that is just it.  But yeah, I also experience problems with Apples and pears as well.  I am suddenly unable to eat peanut butter or anything from tree nuts, which is a bummer.  I'd like to be able to buy some prepackaged gluten free foods once and awhile and eat those but it just isn't happening.  I get such a bad reaction from anything at Wal-Mart, etc.
      And I don't believe it is the one food at a time thing for me.  I know what you are referring to, but I looked into that.  I'm sure a good Celiac doc would've recommended to lose the cheese and milk.  But...but...I love my cheese. lol  Alright, I give in.  I really, really want this stomach to heal.  The pain is constant.  
      Appreciate the advice.
      • 0
    6. KnightRobby added a post in a topic At A Loss; Constant Stomach Pain Continues   

      I have an official Celiac Diagnosis through blood work. The biopsies came out to be negative though.  I also have had an endoscopy and I got the hayfever diagnosis from an Allergist.
      I am also anemic, as diagnosed by my Gastro.  I really don't know if the anemia could be causing a lot of these problems or not...?  Perhaps I should see a hematologist eventually?  
      The biggest problem I have at the moment is I am surrounded by worthless doctors.  I told my Celiac doctor I was anemic.  He did not believe me, so I ended up in the ER and they diagnosed me.  Every single doctor I have been to has been this way.  
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    7. KnightRobby added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      At A Loss; Constant Stomach Pain Continues
      I have been Gluten free for about a year and a half now.  I went Gluten free, I did not get better, and went down to 108ibs.  Then I got a diagnosis of severe hayfever and now every time I eat I end up in major stomach pain.  The bloating is out of control.  I am also allergic to everything, including nearly all fruits and veggies.  It has gotten worse since I moved to AZ.
      I managed to get my weight back up to 160ibs by drinking goat's milk and cranberry juice (yuck), the only 2 things that seem to help a little.  I am also suddenly anemic.  I don't feel like going back to a Celiac Doctor as every Celiac Doctor I have seen is an absolute joke.  It is a money making tagline now.  Anyone who is a doctor is also a Celiac Doctor, which makes it very difficult to find the real Celiac Doctors.
      I can't eat any prepackaged foods at all, even if they are completely gluten free. They either cause SEVERE stomach pain or some other allergic reaction.  I am avoiding all allergens too but the stomach pain is so persistent.  
      I have no clue how this happened.  I used to have no problems with gluten until I moved to AZ from IN.
      • 6 replies
    8. KnightRobby added a post in a topic Eating Out...recommendations?   

      Alright, stay at home it is.  Thanks.
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    9. KnightRobby added a topic in Celiac Disease - Coping With   

      Eating Out...recommendations?
      Hey everyone.
      I was wondering what everyone does for eating out?  I have Celiac Disease but I also have hayfever and it is hard to explain.  I usually have problems with the simplest of seasonings.  I don't even know at this point if it is possible to risk eating out.  I am still recovering from weighing 108ibs (now up to 160ibs thank goodness).
      Any suggestions?  How do you handle this?
      I am wondering if I should call around and speak to managers from various restaurants tomorrow.  I don't know how to explain this to them.  I have an incredibly specific diet at this time...And I don't know if I trust people with my food. 
      Actually, I don't - lol
      • 5 replies
    10. KnightRobby added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Chronic Gastritis...
      My endosocopy revealed that I have a case of chronic gastritis.  Of course, the doctor that did this test ignored this, and really didn't inform me about it until later and I asked and did more homework about it.
      I am noticing more stomach pain from this Gastritis and was wondering if anyone has dealt with it, or is dealing with it at this time?  I have seen gastritis diets and I've tried them all - and for extended periods of time - with absolutely no relief.
      I also made a post about Tylenol and I am thinking about just trying it for the stomach pain and inflammation.  Any thoughts about Gastritis and treatments?
      I am currently using L-Glutamine (amino acid) in powder form to encourage healing.  I am thinking about adding Green Tea, etc...
      • 2 replies
    11. KnightRobby added a post in a topic Cold Snowy Winter Comin'............ Git Ready   

      I used to live in Indiana.  I moved to Arizona to get away from the snow.  Now all I have is dust and a severe case of chronic hayfever.  So much fun.  I wasn't expecting that.  Still, I really hated the snow and truly understand what a pain it can be!
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    12. KnightRobby added a post in a topic Arsenic In Rice   

      I'm actually questioning rice at the moment.  Chex cereals cause me more stomach pain but I don't know if this is from Celiac or Gastritis.  And I have chronic case of Gastritis.  It seems to be more about some of the textures of foods as well.  Anything rough feels rough as well!
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    13. KnightRobby added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Any Opinions On Tylenol?
      I've heard Tylenol is gluten-free but I'm having such problems beyond Celiac that I am a bit worried about taking it.  I have severe, chronic head pain from TMJ (dislocated jaw which is very difficult to fix).  I'm also having stomach pain from Gastritis as well.  I'm honestly thinking about just breaking down and taking it.  I am thankfully on no other medications as I have had very bad experiences with them.
      Has Tylenol helped anyone with stomach pain or pain in general?  If not, what has?
      • 2 replies
    14. KnightRobby added a post in a topic Anemic, Chronic Pain, Tmj, Celiac Disease, And Severe Hayfever. Difficult Times...   

      I'm going to try to reply to everyone, as I really appreciate everyone's replies.  Bear with me...
      Actually, it's not crazy.  I really have learned not to give a care about what people think anymore (honestly).  I'm so sick that, yeah, I find enjoyment going online, talking to a group of friends, and just distracted myself with a good night of gaming.  Eating out is just not possible.  Going to movies is painful.  And talking with multiple people at once can be too much on me at times.  I think it is just the amount of pain from the jaw.  It's incredibly distracting.  But for some reason, online gaming is the easiest thing to do!
      I think Vitamin testing is so important.  Thankfully, B12 is fine right now (it's actually a little high)  I might also consider doing the iron infusions.  I'll have to call my doctor and ask him more about it.  Vitamin C with iron is something I am currently doing as well.  Good idea.
      I'll look into the Alpha Stim.  It was mentioned to me at my Chronic Pain doctor's office, but I never had the time to look into it as I was trying the TENS Unit (which is a joke for me).
      I could use the good vibes!  I need to get back to the Oral Surgeon and find a GOOD one.  At the moment, they all don't know what to do with my jaw.  It's incredibly frustrating.  I am hearing the mouth guard is important though.  What was your jaw problem exactly?  My left jaw dislocates in the closed mouth position with recapture in the open mouth position.
      Okay, yeah I will definitely look into furrous glucanate.  I didn't know about it.  I don't know why these doctors don't mention stuff like this.
      I have had Vitamin D defiencies in the past actually.  Right now, I am drinking Goat Milk, which is actually healthier than Cow's milk.  And it does seem to help my stomach from time to time.  But wow, it is expensive!
      Thank you for the info!
      Yep, I am currently taking Vitamin C (500mg) with my Iron.  I hope it is working.  It's a bit frustrating not knowing in the short term.  I have Terry's Nails and my pain has increased.  We'll see what happens as that is really all I can do right now.  I feel like I am doing everything right in terms of vitamins and nutrition at this point.  I can't believe you were down to 4.
      • 0
    15. KnightRobby added a post in a topic Anyone Have Tmj Problems?   

      I have severe TMJ also.  My TMJ is 24/7 pain.  I'm part of several Facebook groups related to TMJ and really don't hear about the pain being this constant.  I have an official diagnoses but treatments are expensive and knowledge about it is limited.  I can't even lay on a pillow without being sent in severe pain.  It's crazy.
      Anyone have any luck with treatments?
      • 0

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