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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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A young friend of mine invited me to her HS graduation Open House brunch in June. I wouldn't want to miss it. She is a sweet girl, a 3rd degree black belt from my Tae Kwon Do school, and a Diabetic to boot - I also told her about my celiac disease a few weeks ago, so she is very sympathetic, having an autoimmune life-altering problem herself. She was telling me about all the great brunch food they are going to serve, then she stopped and frowned, realizing that I would not be able to eat it.... I know she is now going to try to change things around and make something gluten-free, and I told her 'please do not do that.' I really don't want them going to the trouble, and honestly, what I cannot tell them is, although I know they would try their best, they could still easily gluten me. They have no idea about cc and how insidious it is. I just don't want to eat their food. So we will see what happens.

Last night I had my first celiac disease nightmare. I dreamed I was in a college cafeteria (but not one of the schools I attended) and just grabbed a plate of chicken with gravy and mashed potatoes. I took a big bite, then realized the gravy might be tainted, so I ran to the bathroom and went in the stall and stuck my finger down my throat but could only get dry heaves. :(

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Oh yeah, I love those dreams! I have had them where I am eating a big slice of cake with chocolate frosting, etc, and then I realize it's got sugar in it, then I realize it has wheat in it, etc. Freaks me out! I also used to dream about eating Taco Bell or pizza, after I had to stop eating peppers and tomatoes. :D

About your friend's graduation - I hate that feeling - it's almost like I get paralyzed because someone asks me what they can make for me and I think of the basic foods I can eat, then the contamination issues, then what will likely happen, and then how could I put them out and still probably reject what they make for me... and I can't come up with an answer. I feel that the most about my MIL. But my best friend always says that I don't ever tell her what I can eat so she never has anything on hand that I can eat at her house. It's just so complicated! I always tell her I'll just bring my own snacks. For an event, I just wouldn't trust people to make something for me for the most part. It's just too sketchy. Especially after the last time I got glutened and was sick for what seemed like forever! (one week of feeling horrible, one week in addition of feeling like my stomach wasn't recovered).

If it's a buffet, you can probably get away without eating anything and without being obvious about it. But maybe you can just bring something, enough to share, if it's a small group, and eat mostly that. Tricky, I know...

Good luck!

Stephanie

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PS I saw Rush about a year ago - we were right in front of the sound board, in the 10th row of an arena, and I could see every facial wrinkle. It was such an amazing experience! We finally got up and sat up in the lawn area for a bit of fresh air and it was like they were a million miles away. Really cool laser show! My husband is a drummer so he was very impressed by Neil's kit...

Stephanie

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Yes--I wouldn't want to put my trust in someone who doesn't know too much about celiac disease unless I had to.

I've had those types of celiac disease nightmares.....one about eating in a dark, dreary restaurant I had never been to. They told me a chocolate cake was gluten-free and, knowing it wasn't, I ate it--I couldn't stop myself. Then I got scared and wondered if I should try to throw it up or not. :unsure:

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PS I saw Rush about a year ago - we were right in front of the sound board, in the 10th row of an arena, and I could see every facial wrinkle. It was such an amazing experience! We finally got up and sat up in the lawn area for a bit of fresh air and it was like they were a million miles away. Really cool laser show! My husband is a drummer so he was very impressed by Neil's kit...

Stephanie

Cool - last summer I saw them 2 times with my 10 year old son. We drove from Minnesota to Buffalo for the 1st concert and then drove to Montreal for the 2nd show a week later. I first saw them about 23 years ago...

Getting back on topic here.....

Thanks for the feedback. These are the kinds of events I am dreading, and it pisses me off, because I would normally look forward to them, not dread them. The one thing that will probably get me through this is that she understands and sympathizes, being a diabetic, so I don't think it will hurt her feelings if I don't eat. Also, I see her about 5 days/week and the event is over a month away, so I will have a good chance to make sure she understands.

Later this summer I have a wedding (that'll be tough, too) and a Blackbelt camp where they will be serving meals similar to school lunches. That will pretty much require me bringing my own (cold) food to eat and explaining to everyone why. Sigh. I HATE having to share stuff like this with people - I'm very private and reserved and I'd just as soon not have to explain it a million times.

I can see how it is going to be so much easier to just not do stuff. I'm already a bit shy and not very sociable, this is not going to help me come out of my shell AT ALL.

Thank you all for letting me vent! It is so nice to have a place where I know I will be understood. And it helps me to hear you all vent your problems too!

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I have a baby shower this sunday and in light of how I have been feeling with accidental gluten ingestion I was thinking of not going. then I got a call from one of my best friends and after much conversation i gave into going with her.

She suggested eating a plain grilled chicken or something of that nature.....they just don't get it! we were all together about 2 weeks ago when my hubby threw me a surprise party and even with checking everything and speaking with my waitress..i got sick! I was sick for days. now i am so afraid to eat out because i haven't gotten really good yet at decoding all that they serve at restaraunts...also...i don't trust them. But......you can't hide from living your life.....there is so much that i've missed out on already.

my friend suggested having something right before and then eating a plain salad.... no dressing while there.

let's see how that goes. it's an early shower (12:00pm) and I have about a 2 hour ride before me.

Maybe I'll sneak something in my bag and just happen to go to the bathroom when they are serving the main course! :P

I guess the most important thing is being together and having a few laughs!

good luck and let us know how you make out!

;)

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I think you're doing the right thing - not eating the uncertain food. But I also think that the harder it is to discuss that you have a dietary restriction, the harder it's going to be to keep to it. Of course, how we feel about sharing these issues in an intensely personal thing, but I would encourage those who feel great anxiety over discussing that they can't have something to think about whether or not it's possible to change that feeling. It might be. It might not be. But it's something that might make sticking to the diet easier if it's something that can be done. (I really mean no judgement here, I just know that there are things about how we react to situations and how we feel about certain things that we CAN change, so I bring it up as a possible course of investigation.)

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I agree with you about dicussing it and it's something that we shouldn't be ashamed of. The point that I was making is that even though I discussed it with the waitress and my hubby discussed it with them before throwing the party I still got glutenized. I don't think most servers or chefs really know about gluten and all the precautions needed to take when dealing with someone who is intolerant to it. they also don't see how sick we can get. Unless of course you get a restaruant that caters to people with special dietary needs.

I always tell my server of my needs. There have been times that after they brought me the food I knew something was wrong so I wouldn't eat it. Not wanting to upset the eveneing I would make sure that I ate the plain salad. All in all, it still seems like such gamble to me. Unless I actually see the food, how it is prepared and handled I won't really know until hours later.

A few months ago I ordered grilled chicken in a restaruant. I had discussions with the waiter about my dietary needs. I had the waiter talk with the chef. They assured me everything would be ok. The chicken came back grilled with all types of spices on it. It was also not fresh as they assured me it was. It was one that was previously frozen (with all those preservatives!). i won't go to that retaraunt again!

I guess if you find a restaraunt that you know is safe...it's another story.

I've also had experience with friends that know about my needs. I've gone to dinner at their houses after discussing my restrictions. You won't believe the dinners that were prepared! I got so upset and nervous about one particular dinner that I finally just came out and told my friend that I could not eat her food. I ran home....a few doors away and was able to quickly get some chicken. the evening was saved and we had fun anyway. In the end she apologized for not understanding enough. Although we had discussed making PLAIN porkchops she thought that she would marinate them in bottled dressing for flavor. Not knowing that that ingredients in the bottle were like poison to me. when I told her that I couldn't have the marinate she proceeded to wash it off! she proudly told me that it had been marinating ALL day! And this is someone who knew all about my dietary challenges as I had been reporting back to her almost daily.

In the end we have to be our own detectives.......and are responsible for ourselves.

Again, it's not something that we should be ashamed of though. we just have to scrutinze everything we eat and make sure we know where it comes from.Taking something along with me in my bag is something that I'll do....just in case there is nothing there that I am comfortable eating...especially since it is hours from home!

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I know exactly how all of ya'll feel. A friend of mine invited me to his prom recently, and the group of people we were going with were really good about going to a place for dinner where I felt comfortable. Outback Steakhouse was what I suggested because it's where I've always felt the most comfortable, and most of the group seemed to agree that it would be a good place to go to. However, a few weeks later two girls in the prom group heard about where we were going, and decided that they didn't like Outback and wanted to go somewhere Italian, which basically means a Celiac will be eating a plain salad without croutons. A couple of my friends got really mad about them changing the restaurant plans without asking me or considering where I could go. It was really disappointing because I thought that the group was going to be great, considering how understanding they were originally being. It was so frustrating when I heard some of the stuff they said about Celiac. One guy said, "My friend has Celiac- and he can eat whereever he wants." Another girl said, "Can't she just drink water and eat a salad?" Another guy said, "We can't just go to where one person wants to go if more people in the group don't want to go there." I have a disease! Do they think that I'm using this as an excuse to get my way on where to eat? Trust me, if I could eat pasta and all that great Italian food- I would!! I can't believe some of them would be so insensitive. One of them suggested that he'd bring me Outback take-out while they went to some fancy Italian place. I don't want to make my date go through the drive-thru and lug in my food at whatever restaurant they want while I'm all dressed up and supposed to be enjoying myself. Maybe I'm overreacting a bit, but it just really offended me that they would be so inconsiderate. I've had Celiac for over a year, and they were acting like they knew more about where I could eat and how it affected me than I do. Even if the one guy's friend does have Celiac, it affects people in different ways. I tried to explain to them that even if a restaurant says they have some gluten free things on the menu, that doesn't mean that there won't be cross-contamination. I tried explaining to them that I already wasn't completely comfortable eating out anywhere, considering cross-contamination and the fast reactions I get, and that Outback is a place where I eat out a lot at, and a place that I'm really comfortable at, but they just said I was being difficult. It's so frustrating to have to worry about this when the social event is supposed to be for enjoyment. My prom group ended up splitting up. The only positive spin on all of the annoyance some of the persons caused, is that it really showed me who my true friends were- the people who stood up for me and were totally understanding of my worries about eating out and my disease. People just don't understand sometimes. My whole point of my rambling was just to say that I totally sympathize with everyone about social events and food being such an issue. It's nice to have people who are dealing with the same thing I am. :)

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You find out real quick who your REAL friends are with this disease. Mel, my ex would make marinated or breaded pork chops and chicken and then say "You can just scrape it off or wash it off." :angry::angry: And she still wonders why she's an ex and not a Mrs. anymore. :lol: A lot of people just don't get it but I have met some that really go out of their way to accomodate my needs. Sometimes they don't quite get it right but at least they made the effort and that's what really matters.

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Yes, you do find out real fast who cares about you and who doesn't. Last Friday, our car was broke down, and my son's truck broke down, so his girlfriend's grandma came and rescued us and took me so I could get groceries. She is a wonderful lady, I enjoyed being with her, but when her and my son's girlfriend decided, without asking anyone else, that we would all have lunch at Pizza Hut, I don't mind telling you how my stomach just clenched! For one thing, with car repairs on the agenda, I had no money for eatouts, for another, Pizza Hut is not a safe place for a celiac! My daughter was with me when the decision was made, and she invaded my privacy in the bathroom to ask me what was I going to do, did I want her to say something to the girlfriend, she was quite worried about me! I asked her if she had ever been in the one they were talking about, since I had not been, did they have a salad bar, if so I would check that out or just get a drink only. "Grandma" paid for it all, turned out she had a half-price coupon, and I had a small salad, and everything was all right. I was scared, though, and I really appreceiated that my daughter was concerned for me. I have found lately that if I just stay calm, things will work out. Even if I had to skip a meal, it was not the end of the world.

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Its really upsetting when people are insensitive to your health problems. I went to a birthday party recently where the hostess knew about my dietary needs. Its a good thing that I ate before I went there though and brought some nuts with me.

The only thing I could eat there were some cooked carrots that they put aside and some plain rice. I acted like I didn't care but inside I was a little upset.

Now whenever I go to someone's house I bring my own food and eat before I go there as well.

June

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this really is a tricky thing...

with my in laws, my mother in law has a list of exact brands and makes special shopping trips just for me (while on the phone with me :) before dh and I come visit. she really has adjusted well.

dinner out is tricky but after a couple of times of me getting sick on what should have been safe food at "regular" restraunts, dh has been supportive of now going only to places with gluten-free menus or small independent places where they actually know what is in their food.

as for friends, the ones that listen very well to what I can and can't eat, and don't get offended by me asking ridiculous questions about how they prepared their food (of which there are really only 2-3) and my gluten-free friends (love going to their house for dinner!!!) are the only ones that I will eat their cooking. everyone else, unless I've spent time with them explaining, I will not eat what they made. In that case, I'll try to take a dish with me after explaining that I know that they are busy preparing for a party and I dont want to "put them out" having to do extra accomodate me. If not, I'll go and say I just ate (my least favorite option, b/c I hate the stares and the "you're so skinny eat something" comments, as though it is ok to say this where it would never be ok to make the opposite comment to someone who happened to be overweight). My mom (gluten-free for 25 years) has been really supportive in this one (with an occasional kick in the butt) in making me go to things and still have fun regardless of food.

it is tricky and I'm still learning... but these things have helped so far!

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To all of you that have good friends that are accomodating and helpful....that's great! I went to my best friends sister's baby shower today. It was a 2 hour drive and I picked another friend up along the way. they both know about my food intolerances and are always so helpful. This party was at a catering hall so I called the place ahead of time and my friend discussed my dietary needs with the banquet manager. They assured me they were making everything according to what my friend explained my restrictions were.

I left early this morning for the party so I took a bagful of raw nuts and a banana in my bag. In light of all the mishaps I have been having I wanted to be real careful. I can't afford to keep getting sick the way I have been. I takes days out of me and gets me totally depressed!

anway, the brunch looked great but of course I did not have anything. I had water when they made the toast as I did not want to even sip the champagne. The waiter knew of my needs and brought out a beautiful salad of baby greens with tomatoes...no dressing but a fresh bottle of olive oil on the side.I was so excited because that's exactly what I do at home! He thten told me they were grilling my plain chicken breast (naked) and grilling some plain eggplant. Great! when it arrived it looked good. I was finally able to relax and enjoy my meal. I knew it was fresh...no preservatives......they assured me and it looked like a fresh piece. I ate every last piece and was enjoying a girls afternoon. My friend came over and saw that I was eating....she was so nervous about the food for me but felt better once she saw that they had gone the extra mile. She then told me that she had a bad of fresh salad in her mother's purse just in case they had dressing on my salad. I thought that was so sweet.

then it hit........2o minutes after I finished eating I started to feel light head, disoriented and racy. My heart was beating fast and then the muscles in my legs started to feel such pain. I couldn't even stand up. I felt that I had swallowed poison. The typical gluten feeling! then the stomach pain started. Of course I got upset but didn't want them to see. My other friend who was sitting next to me saw that I didn't look good and asked what was going on. She even offered to go home right away. I hung in there and stayed another half hour....

while we were driving home the friend that threw the party called me on my cell to check on us and make sure we had a nice time. Seeing all that she went through I didn't want her to feel bad so I didn't say anything. I told her the party was fun and it was nice being all together.

What happened?

I'm sure I must have gotten cross contaminated.......They had so many dishes....all of which had some sort of flour. It's possible that the chicken breast was cut or pounded on the same table as the chicken rollatini, or eggplant parmigiana, or chicken francese, etc.....

My gut is now bloated and sore and I still feel weird.the muscle pain is better but still achy.........Maybe becasue it was just a little bit this won't be as bad as a full blown "glutenization"....I'm just so tired.............

I have 2 communions....one graduation, one 70th birthday...all within a month.

I am so happy that I finally know what is going on.....but it is so hard to get it right. I think that the only smart thing to do at the next party is not eat! I think it's different eating at someones house that you know....but with a catering hall....it is so hard to make sure that they don't cross contaminate. what a nightmare. :(

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Man! I just walked in those shoes. Only I wasn't smart enough to not eat what my family had so thoughtfully prepaired for me. They told me they made one of my favorite desserts with rice, mandrine oranges, cherries, whip cream. yummy, NOT!

The rice turned out to be pasta!!! Luckily I discovered this after about 4 bites. I freaked out. Went to the cook and asked if she was sure it was rice and she said "Oh, rice or pasta, something like that." I made a beline to the bathroom for a session of purging. (Gross, I know) I was in there a long time. Then I bolused water the rest of the day and most of the next day. My reaction wasn't the worst ever. Tired w/body aches and constipation followed by the loosening of the stool. No DH noted yet, it has been a week.

I have decided not to eat anywhere I don't participate in the preparation of the food.

My mom was even trying to help me out by making home made potato salad. One of my favorites and she doesn't do it anymore. She put the boiled potatoes on a tray she had made chocolate chip cookies on and she had not washed it. So now the potatoes are contaminated. Then I started looking around her kitchen and I ealized for the first time in my 40 some years, my mom is a serface cleaner, there was flour all over the lid to the sugar container. Needless to say I probably will not eat at mom's again. No matter what.

I am going to a wedding this summer and have decided to tell the bride not to include me in the count for the dinner. I will eat before I go to the reception and arrive after everyone else has eaten and just enjoy the family and music.

If you go to the brunch I would just eat before you go and realize you are going for friendship not food. Maybe you could put something that looks safe on your plate and just play with it, women do that all the time and never really eat anything. Good luck. I hope you can come to terms with what you need to do. This is a tough disease to work around but it sure is nice knowing why we felt so awful before diagnosis.

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Hi Casnco,

boy is it tough. thanks for sharing your experiences. It just makes me realize how serious and how much harder I need to work at this. Not that I want anybody to be sick from this....but knowing I am not alone and have a place to come to talk....makes me feel a little less desparate.

last night was bad....as I woke up at 3:00am with muscle pain and vertigo....One of my telltale gluten signs!

This way of life is new to me ...I'm sure I will keep learning as I go.

take care of yourself. good luck with the wedding!

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Wow... I am getting really scared. I am wheat allergic and being tested for celiac disease. This is going to change everything about my life.

I was one of those who probably would have said something to the effect of "you are over-reacting."

That was the way I was with a friend of mine with reflux for a while. How dumb is that. Now that I have experienced it first hand... All I can think of is apologising.

I am not even sure I am cooking correctly at home. I am single so it will make things easier. But now, I really wish I had a "keeper."

I don't want to cry, but I just can't get rid of this pain and this panic that my life is over in some way. I am too young to be this debilitated.

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Your life is far from being over...it has just changed. eventually, things will fall into place and you will get the diet worked out...just as I am trying to but you will e feeling better.

just hang in there and give it time. we are all here to help one another.

you can do it! :D

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All I can say is it gets easier. I have been gluten-free for a year and a half now, and it is pretty brainless now. I am very conservative going over to peoples houses for dinner, and usually stuff myself first, and I like going to the same restraunts over and over again. but once you get a rythm, and the people around you get used to your habits, it all becomes normal.

My big concern was dating. How was I going to approach the whole first kiss issue? :P It has turned out pretty well so far, especialy since the guy i have started seeing is mildly allergic to peanuts. We are a pretty silly pair, going through the grocery store. But I guess that is the point, is that we are silly, and not tragic, or stuck alone, or relegated to plain salad.

gluten-free is a little complex, and I get nervous sitting too close to a bowl of cracker,s just in case my arm snakes out andi start to snack mindlessly, but on the whole, it is just life now.

good luck, and have faith that it only gets easier.

Lib

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gluten-free is a little complex, and I get nervous sitting too close to a bowl of cracker,s just in case my arm snakes out

That's what happened to me at the beginning. At our house we had only glutenfree stuff anyway. But when I was at my parents in law I found myself grabbing some crackers like all the time at the beginning, when we had lunch or dinner. And then I always had to put them back down on the plate and go wash my hands... :lol: After a while I got sick of walking back and forth to the sink, so I quit grabbing these crackers... :lol:

Oh, and tomorrow I'm also invited at a baby shower. The stupid thing. This one is a surprise shower for the mother. She doesn't know, that there will be a party for her and the baby. And so I didn't know who to ask. Thankfully I'm never afraid to take my own food and tap the people on the fingers, if they sneak my stuff. :angry:

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    • My own bugbear is that in dismissing the fad diet journalists will typically reference Celiac but will often say that only Celiac patients should be following the gluten free diet. Whatever the consensus medical opinion of NCGS, it's a fact that there are many people who are not diagnosed Celiac but who have been advised by their doctors to follow a gluten free diet. That distinction is typically too subtle for such articles and they therefore help to support the idea amongst the wider populace that if you're not celiac you can eat gluten and if you're avoiding it your either deluded, a chronic attention seeker or jumping on a bandwagon. A reductive and potentially harmful generalisation. 
    • Hello,  Celiac Disease and alcohol consumption cause malabsorption that can lead to vitamin deficiencies. Nutrition has a part to play in connective tissue disorders like arthritis, Sjorgren's, Ehlers-Danlos, and polychondritis.  Here's an article about EDS and nutritional therapy. http://www.chronicpainpartners.com/nutritional-therapeutic-strategy-for-ehlers-danlos-syndrome/  Vitamin D is really important in controlling inflammation.   https://www.ncbi.nlm.nih.gov/pubmed/23830380 You might consider checking for vitamin deficiencies at your next doctor's appointment.   You might want to look into a low histamine diet and mast cell activation syndrome.  I found going on the Autoimmune Immune Paleo diet, a low histamine diet, and a low sulfite diet simultaneously helpful.   The low histamine diet doesn't allow anything fermented. If your reaction to the fermented cabbage is "ugh," it's your body telling you not to eat it.   Cabbage, fish oil, and wine are high in Sulfites.  Metformin is a sulfa drug.  Your body might be inflamed because of a Sulfites hypersensitivity that may occur with Celiac Disease.   These are things I found helpful.  It took several months to figure out what works for me.  I'm doing much better now.  Like CyclingLady, I "eat to my meter" and don't take medication.  I hope this helps us on our journey to wellness.
    • Well first things first, I always read your posts with interest, you have gone the extra mile for answers, put the intellectual work in and crucially kept a rational and grounded perspective throughout and if anyone deserves them you do.  Sadly of course I don't have any,  so I'll simply send my sincere best wishes across the Atlantic.  I really do hope you find your answer.  On this: I tested negative for celiac and my endoscopy didn't show villi blunting. I do however definitely react to gluten in all sorts of ways. So I'm in the nebulous NCGS group, a condition that most of the world seems uncertain even exists or if so questions its relation to gluten.  I wanted certainty and answers and I never really got them. I've come to accept that it's an imperfect world and this is still in medical terms an imperfectly understood area. I've had to park the question of whether I had celiac but it wasn't picked up (there were some flaws in the diagnostic process) or early onset celiac or NCGS or its really fodmaps and I'm working on a false correlation or it's NCIS, no, CSI New York, etc etc. In the end I was exhausted, sick of feeling ill and had proved to my own satisfaction that gluten was a problem and I decided to leave it at that. It's not ideal by any means, but, hey, whaddya gonna do?  There are things I know about my own condition that I can't necessarily demonstrate or have validated by a test. It is, by definition, anecdotal at best, but I'll offer it in any case. One of them would be the recovery on the gluten free diet. This was very much a matter of time. I did have some very quick responses, within a few days for instance for an improvement in brain fog, anxiety etc. Some of the weirder neuro symptoms seemed to take much longer and although the endoscopy was negative for villi damage I can't help thinking that malabsorbtion may be an explanation for the time some of these longer term issues took to resolve.  Weirdly some of those neuro symptoms, say the muscle twinges, that took a long time to resolve now seem to trigger occasionally I think in response to minute cross contamination issues. I have no idea what this means, maybe they require the least amount of gluten present to present so they were amongst the last to stop? I know just a few days ago I was noticing an errant muscle repeatedly twitching and I started thinking about the bbq I'd just risked using... None of which of course proves anything or gets you further down the road. I do think however that this: is a good idea and I'd encourage you to push that limit back from the end of summer to a date at least 6 months and perhaps longer away (I'm thinking 12). The gluten free diet is a pain in the arse but it's healthy (or it is if you make it so) and aside from a slight increase in expense it's increasingly straightforward to follow. Go gluten free, apply just the same rigour in pursuing the diet that you have in looking for answers. Do the food journal. Do the whole foods for 3 months, cross contamination procedure with pans, check toothpaste etc.  In short, proceed as if you'd had a positive celiac diagnosis and try to eliminate all doubts. For X many months, live as if gluten free isn't a choice, but a necessity.  It makes it easier believe it or not. Give the diet sufficient time and you will be running perhaps your last test by yourself, for me that was the most significant test of all.  Oh and on this: I learnt, at great personal cost in terms of the sheer misery I went through that my view of health professionals was juvenile and unhelpful. The unquestioning belief that as children we invest in doctors, nurses etc can translate into an over investment of trust to a level which would not be the case in any other comparable scenario. You go to them at your weakest moments, in search of validation, comfort, solutions etc. and if you have a bad experience the first impulse is to blame yourself or question your own experience. Well I'm way past that now. Just like any other walk of life there are good, bad and lot's of indifferent people working within. I've had some great experiences but I've also had some awful ones and indeed just a few days ago I had one so bad that for the first time in my life, I lodged a complaint. Please understand as a British person this is very unusual indeed  It was a horrendous meeting and I was treated in such an appalling way that if I related it here you may not believe me. A couple of years ago it would've destroyed me. Now I just shrugged it off, then realised that if I allowed that behaviour to pass unquestioned I'd be doing a disservice to the next person who had to suffer that kind of treatment. You've shown on here your an intelligent person with a fully justified and admirable engagement in looking for answers. If your doctors aren't picking up on that the fault lies with them. tldr **** them. Best wishes from the sunny UK  Matt  
    • I think the gripe with this sort of article is that it's not telling the right story. When you write anything, you have a choice about whose story you tell and the consequences of it.  While such articles are factual in the sense that objectively, a GFD is worse than a similar regular one, the focus of these articles undermines the struggles of those who must be gluten-free while also not really giving any information that is likely to result in changed behaviour. All this sort of article does is justify the anti-gluten-free circlejerk. I think many of the journalists here think they're on the side of people with celiac disease because they're underlining that the fad diet is dumb/pointless/harmful/whatever. While this may be true, the message the reader remembers is this: the GFD is frivolous. It doesn't matter if there's a line in the article that says something about how the GFD is a medical necessity for those with celiac disease. People don't remember the asterisk in the article. All they remember is that the GFD is for idiots.  What would be valuable and useful is discussing celiac disease - symptoms, longterm consequences etc. and how strict those with celiac disease must be with the GFD in the context of this research. This will do a better job of convincing people that the fad diet is dumb, but do so in a responsible way that doesn't undermine the real problems faced by those with celiac disease or other medical conditions. Plus, the increased awareness might make someone realize that they should get tested.
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