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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 idonteatwheat

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    • Gender Female
    • Interests cooking, crafting, traveling, reading, volunteering
    • Location florida

    idonteatwheat's Activity

    1. idonteatwheat added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Glade Carpet Powders
      I had the oddest thing happen this week and the only thing I can think that is in common is the Glade scented carpet powder.

      A little background, I'm pretty sensitive to things, if there is flour in the air it can trigger a reaction for me. Then I have my buddy Jack, who has 4 legs and came to me thru a rescue organization. He had been through several homes because of his chronic diarrhea and they had tried about every medicine on him. He was all ears and feet and pretty skinny. I think it was fate that we got him, I put him on a grain free diet and after a while he filled out and the diarrhea went away. I know once I bought wheat free dog food and it had barley in it and he broke out in hot spots and scabs. Anyhow on to this week.

      I put down a whole bottle of their clean cotton scent carpet powder (I have a lot of carpet) to just freshen things a bit, typically I don't use this stuff. So I put it down, had the dogs (I have another one who can eat anything) in the kitchen and then I vacuumed it up. When you put it down it is really strong in the air and I did start to tear up at that point but didn't think much about it. Well ysterday both the Jack and I showed signs of glutening, he had an accident that morning and he never has that and had to go out repeatedly throughout the day and let's just say I was much lighter by this morning. The other dog is fine, and no one else in the house except Jack and I are dealing with the diarrhea. Since he had nothing besides his dog food and I didn't eat that the only thing in common is the carpet stuff so I called them.

      They referred me to a website and I looked it up and the only thing that could have it would be the fragrance component and of course they won't tell you what they use for that but they do have a comprehensive list of possible ingredients, one of them is wheatgerm extract. Now I know wheatgerm oil even in conditioners makes my skin go nuts so if that was part of the fragrance (which it could be given it was clean cotton scent or something like that) I might have breathed it in and the dog might have done the same since he sleeps on the floor at night (or licked it off his paws). Anyhow I'm just bringing this up in case anyone is super sensitive you might want to read labels for stuff like this too since it does get into the air. According to the website it is 2% of the product that is fragrance so it could account for a very small portion but if you are doing a large area you might want to wear a mask or maybe just use baking soda :-)

      I'm going to have to vacuum my daughter's room again more thoroughly since that is where he sleeps and I don't want to be up again tonight at 3:30am if I can help it, I suspect he doesn't either.
      • 0 replies
    2. idonteatwheat added a post in a topic Can I Eat Sushi?   

      As far as the rice is concerned you have to know the type of vinegar they use with it. I've been glutened with just a rice bowl and sashimi, turns out they were using a vinegar made for sushi rice and it had some barley syrup as a sweetner.
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    3. idonteatwheat added a topic in Gluten-Free Restaurants   

      Nightmare At Charthouse
      We went to Chart house last night, specifically chose them because they had a gluten free menu.

      So when we arrived I asked for the gluten free menu and was given it and it was obviously different from the regular one (different size and style so the server should have seen based on that alone). I ordered and explained that I needed gluten free so not only did she see the menu but I told her, even had a discussion about the salad bar at that point. I thought things were under control.

      I ordered this appetizer: Crab, Avocado, Mango Stack 14.99 jumbo lump crabmeat tossed in remoulade, layered
      with avocado & mango, and for an entree I ordered Bronzed Fresh Fish 29.99 pan seared, savory balance of sweet & spicy, topped with jumbo lump crab, diced fresh tomatoes & lemon shallot butter, served with steamed vegetables both from their gluten free menu.

      So the appetizer comes and on top it appears to be either ginger or carrot shavings so I don't think twice since it was on the gluten free menu. Well it turns out to be fried sweet potato that was not supposed to be on there and of course I found this out after eating some of it. It was fried in the same oil as their breaded items so there was going to be cross contamination. I asked the waitress and then waited for a response which took a bit only to find out it wasn't suppose to be on there at which point I asked to speak to the manager (who was the one who gave me the gluten free menu). At that point our waitress began to ignore us, most likely because she knew she didn't follow procedure and was at fault.

      Everyone got their meals and mine came out too and the manager sent it back because the kitchen was never made aware it should be gluten free and it wasn't. So there I was sitting waiting on my meal while they were eating, not great but not a big deal as it has happened before. Well here is my "pan seared" fish, notice how burned it is well I took a bite and it was lukewarm inside.
      There's the picture of it, I couldn't bring myself to eat it.

      So I took it to the manager and told her I didn't want it and they didn't have to try a third time, god only knows what they would do since apparently serving something that charred was "OK", the "chef" said that was how the dish was supposed to be cooked. I was upset but not raising my voice, and none of this went on near where we were seated.

      Anyhow I went back to the table and was going to just wait until my family was done with their meals and the manager came over. This and the conversation I had with my husband apparently angered the person seated at the next table to the point he interrupted and told us we were ruining his meal and we should take our conversation someplace else, we was quite arrogant about it. At that point I was just done, not only had I eaten something that was cross contaminated and then I was served something charred but this guy made me feel like I was some sort of leper.

      I need to add at no point was my voice raised above a speaking voice. I just got to the point where I realize that if I say nothing then this paves the way for the next person to be sicked and so on and so on.

      After he said that I got up and was going to go sit in the car since I could feel the tears welling up. I ended up in the bathroom talking to the manager and crying. What a horrible experience last night.
      • 2 replies
    4. idonteatwheat added a topic in Celiac Disease - Related Disorders & Research   

      Serotonin & Celiac & Depression
      I had am ah-ha moment this week and want to share & maybe learn more from others.

      Do I have low serotonin levels?

      In May I had a huge reaction to Synthroid that put me in bed for days and I haven't bounced back completely. I suspect it set off a reaction of some sort that totally messed with my absorption and hormone levels. Besides all the physical things, it also has effected my moods, sleep and energy levels and I started to think maybe I am "depressed". I took zoloft about a decade ago and it did nothing for me besides upsetting my stomach and making me have no zest for life so I didn't want to go back on medicine. So I started digging into things thinking maybe I had become deficient in something again (I have a past history of vitamin deficiencies and anemia).

      I hadn't been sleeping and tried various things to help over the last few months and nothing really worked consistently to get me to sleep and keep me asleep. I think I have my answer, I suspect I am not absorbing the B group well and perhaps not tryptophan. I started taking sub-lingual B-complex and at night a low dose of tryptophan or 5-htp and I have been sleeping and feeling so much better. I also have to avoid carbs/sugars for a few hours before bedtime or it disrupts my sleep (think it is an insulin issue there) but I am sleeping.

      So here's my theory, 80% of our serotonin is in our GI tract (in enterochromaffin cells) and the rest is in our platelets and central nervous system. Our GI serotonin is used to regulate the movement of our intestines, now I know when I have been glutened my intestines do a marathon of movements so perhaps that simple act depletes a significant store of serotonin. Then it is followed up by inflammation which may impede the absorption of the nutrients necessary to replenish it. The enterochromaffin cells also release it to platelets which use it to help with clotting (which explains some of my issues with wounds taking longer to stop bleeding maybe). Stress also will deplete serotonin levels so I wonder if this "stress" of being glutened triggers a depletion and we just don't bounce back quickly. Serotonin also plays a role in the communication of the nervous systems with the immune system. Since we are suffering from an autoimmune disease it makes me wonder if there is more of a key here to the causes of gluten ataxia and other neurological issues we experience after being glutened.

      Serotonin is made from Vitamin B6 and Tryptophan (well really 5-Hydroxytryptophan, 5-htp). You cannot take Serotonin as it will not cross the brain barrier but the metabolites will, but I wonder if your GI system is deficient if it uses up most of it and less is available for the brain. I know after I am glutened and get over the initial misery I tend to have a sweet tooth and crave carbs and this is a good sign of being low in Serotonin and my body trying to replenish it (which is not good, I've gained 10lbs since May, ughh).

      Antidepressants in the SSRI class (zoloft, prozac...etc) do not make more serotonin, they just try to use it more efficiently. I wonder if those who have tried SSRI's and had a bad experience if it was because there wasn't a sufficient amount of serotonin.

      Here are some links to foods with higher levels of tryptophan and B6 (just get past the first page on the tryptophan link, some of it made me go ewwwww and I suspect I won't be alone with that.)

      I've been taking supplements but I would like to get to the point where I can consume what I need in my diet and maybe only occasionally need a supplement for say when I've been glutened.

      I wish I knew what all I needed to take to counteract the effects of an accidental glutening. I know there is no way to prevent it totally but I would love to be prepared to do what I can so I can bounce back as quick as possible. I just want to feel normal again, whatever that might be these days.
      • 1 reply
    5. idonteatwheat added a topic in Celiac Disease - Related Disorders & Research   

      Thyroid & Misery Of Switching Meds
      I've been on Armour since last September and was doing wonderfully on it (my other hormone levels had increased too just like my primary said). I stupidly decided because I was having all these hormone issues to go see an endocrinologist, which I did toward the end of last year.

      The endo did more testing and decided in April that I needed to be on synthetic thyroid medicine, she didn't trust the dosage of the Armour. We went away on vacation and I put off taking the new meds (Synthroid and generic liothyronine)until we got home (thank God I did).

      To say I got glutened is an understatement, by the third day I couldn't get out of bed, every bit of me hurt (but no fever, a sign). I took the first pill on a Friday and ended up with the usual complement of GI complaints by mid day. It went downhill from there, I totally was congested and my throat was swollen. Honestly I thought it was a cold at first until the neurological symptoms started and I got the mouth ulcers, that was the clincher that it was gluten. I didn't really put it all together until Sunday, I got up and took the Synthroid and liothronine and crawled back in bed and in minutes I was all wheezy and my throat got tight. That's was my ah-ha moment and when I googled the Synthroid. Now if I had told the endo once I said it two dozen times about celiac so I naively assumed she wouldn't give me something with gluten (I mean autoimmune diseases typically are not isolated things so she has to have other celiac patients I thought).

      So I took Alpha Lipoic acid at that point (it is an antioxidant and I was having issues with blood sugars and the neurological symptoms so I was desperate to try and get the poison out of me). Typically I avoided ALA in the mornings when I took my Armour because it can cancel out the effects of it. I also took some glutathione and vitamin D (probably just to feel like I was doing something to help myself more than anything). I started to feel better on Monday and needless to say went back on the Armour.

      Either Tuesday or Wednesday I called the endo and left a message with her nurse describing what happened. The nurse got back later in the week and basically told me she wasn't changing my medicine and they switched me to another endo in the practice who prescribes Armour. I got a letter a day later with an appointment to the new doctor. I'm beyond aggravated, 10 days later the ulcers are finally healing and I still cannot eat without having GI issues. I feel like I ate shards of glass, after eating I can tell when things are going through my GI tract. I just had an iron infusion this week for the anemia, now I am afraid I've triggered more damage and GI bleeding which will just compound things.

      I just had to get this all off my chest, I swear it is beyond aggravating to deal with doctors. I think I am going to cancel the appointment with the other endo and just let my primary care doctor manage things.
      • 8 replies
    6. idonteatwheat added a post in a topic Controversial Facebook Post By Chef 

      There was an article in the Colorado paper painting the restaurant as a victim in all of this, and perhaps to some extent they are, but on a blog someone mentioned two photos on the chef's FB page that showed a kitchen with a group of people and I believe one of the captions mentioned the restaurant or a timeline that led to that and the other one is all over the news showing him in a Chef's coat. It would be nice to clear that up and know which kitchen that photo was taken in as I would find it hard to imagine a chef with such training who was only waiting tables happily posing as a chef. I guess I am just saying it would be easy to say he was a waiter after the fact to limit liability and negative press so seeing the kitchen in the restaurant would help clear that up.

      I would hate for this to be twisted into something that puts us all in a negative light since the chef already had that vehement opinion. This really becomes an ethical dilemma, as a person with food issues I want to avoid anyone else becoming ill at a restaurant but where is the line where you stop with negative reviews to travel/restaurant sites (yelp, urban spoon, etc)? It is a different situation from a health inspector finding obvious problems. It is a hard call, what do you all think?
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    7. idonteatwheat added a post in a topic Controversial Facebook Post By Chef   

      In contrast you have Ming Tsai, a chef with a child with food allergies who is active with education for food service in this area. I wonder how he feels about this debacle. He should be encouraged to speak out for better training and education.
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    8. idonteatwheat added a post in a topic Controversial Facebook Post By Chef 

      Well it looks like they got the message.
      • 2
    9. idonteatwheat added a post in a topic Controversial Facebook Post By Chef   

      Thank you all, as a group we all have the power to help change this sort of behavior. Yesterday when I posted I was so upset and angry and felt like there was so little I could do to stop this guy from hurting anyone else.

      I haven't posted or blogged much in the last year, it has been a rough one for me. A string of gluten exposures triggered an awful bout of ataxia, thyroid issues and total lack of blood sugar control. It took months and countless tests to get me to a point where I was back to feeling somewhat normal. Then this past weekend I had a glutening and well you all can pretty much guess how I'm feeling. So hearing about this jerk from a friend just was the icing on the cake for me.

      I think most people do not get it because typically we do not show outward signs immediately. That doesn't make it right and doesn't give anyone the power to damage our health. I cannot tell you the number of times I have put down my fork thinking OK what is it that is tying my stomach in knots, MSG or gluten and not eaten another bite.

      I need to probably share this just to get it out there too, it was another chef with an attitude that I encountered not very long ago. We went to Carabba's (which is hit or miss it seems) and even after asking for my steak to be cooked in a pan or on foil they still grilled it. It came out and I was told oh it was a clean area of the grill (their grill baste contains gluten and how can you tell if it is on an item or the grill, uughh). I asked again for it to be made on foil or a pan and got back a dish with cold veggies and a steak in a pool of juices because it wasn't cooked but a few seconds. Everyone else was long done eating by this time too. The server apologized repeatedly and told me the chef was angry he had to remake it and that he didn't want to make it in a pan. I can't remember the exact words but it was basically how dare I tell him how to cook something and passing judgment that I had no idea what was the right way to cook it. I promptly tweeted and direct messaged corporate as they follow me on twitter (thank goodness for smartphones) thinking I would hear something and of course I didn't :-( I won't go back to this location anymore, honestly our Maggiano's has them beat hands down, the chef comes and speaks with you to make certain what you can eat so that is my go to for Italian here.

      It is just so upsetting because I know there are chef's and restaurants that really do care that they give us safe food. It is just so hard to know for sure that you have found one.
      • 1
    10. idonteatwheat added a post in a topic Controversial Facebook Post By Chef   

      From their website they make reference to the Glenwood Springs restaurant still being open in 2008. I only looked because I didn't want to implicate them if I was wrong. I'm just hoping if he is still working there that they will address it with him (I did contact them).

      Honestly I just posted because I was appalled that what I had suspected for a bit actually is true for some chefs. If you all want me to edit out his name or delete posts just let me know. I've just had a hard road this past year with repeated glutening causing some horrible ataxia and me to be incapacitated for a bit.
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    11. idonteatwheat added a post in a topic Controversial Facebook Post By Chef   

      Opps your right, I missed that, but it probably would not hurt to let them know just so they can address it since who knows what sort of influence he had on what is done in that location now if he no longer works there.

      I'm probably a tad bit oversensitive since I was glutened on Saturday and am still suffering from the effects of it.
      • 0
    12. idonteatwheat added a post in a topic Controversial Facebook Post By Chef   

      I had to do a few things this morning but came back and did a bit more googling. He appears to work for a restaurant called Beau Jo's in Glenwood Springs Colorado. If you look he is mentioned on this page,
      They have a bunch of gluten-free items on their menu... Looks like a chain. I imagine they would love to know about this fabulous chef who is a part time doctor/psychiatrist since apparently he knows better than his customers if they do have in fact celiac disease. I wonder how many people have left there and been sick for days or had vacations ruined because of him.

      Here is a quote from their site..."Our commitment to you, our customers, neighbors, friends and employees is that we will operate in a socially responsible manner. Creating the highest quality food along with healthy options and choices for those with dietary challenges."

      I am just appalled, I've never eaten there, don't even know this guy other than the comment a friend made and it still has me incensed over it. I know only too well how it is to be glutened when eating out. It isn't a trivial thing in the least.
      • 1
    13. idonteatwheat added a topic in Gluten-Free Restaurants   

      Controversial Facebook Post By Chef
      I always wondered how much some chef's cared about making something safe for a celiac. I was talking to a friend this morning and she mentioned a facebook post from someone she knew and how he would give people asking for gluten free food regular pasta. I'm not normally so quick to post this but if you look at where he has worked you can see he has has some serious training. Here's the link to his post:!/profile.php?id=100001260439226&sk=wall

      and here is his post....

      Damian Cardone
      Gluten free is bullXXX!! Flour and bread have been a staple of life for thousands, THOUSANDS of years. People who claim to be gluten intolorent dont realize that its all in there disturbed liitle heads. People ask me for gluten free pasta in my restaurant all the time, I tell em sure, Then I serve serve em our pasta, Which I make from scratch with high gluten flour. And you know what? nothing, NOTHING! ever happens! People leave talking about how good they feel gluten free and guess what, They just had a full dose! Idiots!

      Here's his info on his profile...
      Damian J. Cardone has apprienticed under Swiss, Master Chef Kurt Wigger. Damian was the Executive Chef at the Sopris Chalet, Restaurant, Aspen, Co. Executive Banquet Chef at the Tavern on the Green N.Y.C.
      After apprienticing under Master Chef Kurt Wigger, Switzerland. Whom, was the last person to study under Du Franze, who was the last person on earth to study under Georges Agustus Esscoffier.
      Spending time between Aspen and NYC. In 05 and 06, Damian upheld the position as the wedding/banquet Chef at the Tavern on the Green. Has apeared on Regis and Kelli, Project Runway, numerous P.B.S. segments. Personally cooked for Billy Crystal, Martin Short, Tom Hanks, Segourney Weaver, and George Clooney. Currently resides in Glenwood Springs Colorado as a private chef for hire, and learning how to make tacos.

      I am not a friend of his, it is all out there for the world to see, for now anyhow. I have to say I am amazed at the anger and the stupidity of his post. I would love to know where he is working right now and let them know about it. And we wonder why we react sometimes when we eat out....
      • 124 replies
    14. idonteatwheat added a post in a topic Hershey's Kisses   

      I used to live near Hershey Pa and some of my friends had summer jobs at the factory and also at the Reese plant(OK this was a while ago). I can remember them saying how the company reclaimed chocolate if it didn't form correctly or when they cleaned machines, that the chocolate was too valuable to just trash. Now I don't know if they are still doing that but given how companies pinch pennies these days I wouldn't be shocked if they did. So this could be the source of cross contamination. Husband gave me a valentine heart with kisses in it and I am pretty sure I am reacting to them. Also weren't they moving their manufacturing to Mexico or someplace else? That would open up a whole host of other issues with ingredients. I don't know if I am reacting from cross contamination or the artificial flavoring but I am swearing off them for now until they clearly have the words gluten free on the packaging.
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    15. idonteatwheat added a post in a topic So Frustrated With Family Member   

      Thanks, it's just hard. If she was hooked on narcotics no one would give me one iota of flack about trying to help her. I'm just going to go with an open mind and heart and try to make a difference, and well if it makes me nuts someone can just bail me out of the psych ward.
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