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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.

Dealing With Family
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How do you deal with your extended family when they roll their eyes because they think you've gone overboard with the issue of being completely gluten-free and try to avoid CC?

What do you do when you visit their homes? Do you take your own food?

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I really feel for those of you who have this struggle on top of everything else. :( Thankfully my family and friends have been extremely supportive and ask lots of questions to gain a better understanding of things. They all really want to help, not hinder me so I am blessed.

Usually when I go to family homes I get asked to do the cooking as I love it so much and it is a treat for them to be cooked for. I take along my cutting boards, ingredients if necessary, etc. If I am not cooking (unusual) I take along my own snacks. My siblings all have wee children so CC is a big issue.

Is there no one in your family who empathizes with you? :huh:

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I've never felt fortunate until reading your post that my siblings and their families get it. They saw my celiac disease mother gradually become completely wheelchair bound and unable to perform activities of daily living without 1-2 people assisting her. (She was non-compliant with the diet.)

I definitely know what you're describing when you mention how people who just don't get it roll their eyes and think you're anal. I've experienced it at work, with my partner's family and with friends.

There's a period of adjustment. It took months for me to stop being upset when people rolled their eyes. Then you recognize that it's simply their lack of knowledge. I stopped trying to explain, and stopped trying to educate them. And it stopped bothering them. At work, they've seen how much better I'm doing, and I haven't noticed any eye rolling lately.

And yes, I take my own food when I visit. I take some to share too. Even when I have to fly to my destination, I make a stop at the grocery store to stock up on safe foods. And I'd rather have my own cooler than share a refrigerator when I'm not sure about who will respect my food or not.

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try living with two of them after you just got home from surgury sayhing you need to start eating gluten again :blink:

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I've never felt fortunate until reading your post that my siblings and their families get it. They saw my celiac disease mother gradually become completely wheelchair bound and unable to perform activities of daily living without 1-2 people assisting her. (She was non-compliant with the diet.)

How come she wouldn't comply with the diet? I know others who don't comply even though they're told they're celiac because they just 'don't want to have to deal with it'.

Hope she's still alive and can get well again, especially should she decide to comply with the diet. :)

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I only had one episode early on when a friend asked, sort of impatiently, "Can't you just eat a little??" I've never been the "Woe is me" person about it. I always enjoy what I can and never say a word about what's being offered that I can't have. I just said, "That's like me asking you if you can't just eat a little poison. Gluten is poison to me."

This was a friend who is an insulin-dependent diabetic who adjusts her insulin to accommodate whatever she wants to eat rather than modifying her diet so she can use the least amount of insulin... so...

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My oldest son (39) has all the symptoms of celiac and has for years. I was diagnosed earlier this year and have told him repeatedly that he needs to be tested....he won't and he is critical of me for not being willing to have even a little piece of pie or a hamburger.....he doesn't want to understand the disease because he is not willing to face the reality that he may have to eat like I do. When he asks me questions like, "why can't you have just a little piece of cake," I simply reply, "you need to get on-line and educate yourself about celiac - then you will understand how dangerous even a "little" gluten can be for someone with the disease." I get tired of explaining the same thing over and over....he actually seems angry at me because I have celiac.

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We always take our own food and pans and utensils. My mom makes little comments, she feels hurt that we won't eat her cooking and guilty eating stuff we can't have in front of us. We've told her a million times it's nothing personal and we are fine with her eating whatever she wants but she doesn't feel it.

However, she is considerate about it and respects our decision.

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@luvstoeat - I like the poison quote, I will use that one!

My immediate family has been pretty supportive but I haven't had much contact with others since my recent diagnosis. I have been trying to think of things to say like "Celiac Disease is an auto immune disorder that is triggered with the smallest amount of gluten to attack my body."

It also helped that my mom came with me to my doctor and the dietitian. She was shocked at the things she learned and is excited to try gluten-free cooking for me.

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My oldest son (39) has all the symptoms of celiac and has for years. I was diagnosed earlier this year and have told him repeatedly that he needs to be tested....he won't and he is critical of me for not being willing to have even a little piece of pie or a hamburger.....he doesn't want to understand the disease because he is not willing to face the reality that he may have to eat like I do. When he asks me questions like, "why can't you have just a little piece of cake," I simply reply, "you need to get on-line and educate yourself about celiac - then you will understand how dangerous even a "little" gluten can be for someone with the disease." I get tired of explaining the same thing over and over....he actually seems angry at me because I have celiac.

Maybe the reason your son is so angry and difficult is because he may not be eating right. :rolleyes:

You really need to explain to him the potential damage that may be occurring. He won't have to avoid gluten right away (especially if he decides to do the 'challenge' - this can be his opportunity to eat all his favourite foods as part of his 'farewell to gluten' journey).

If your son refuses to be tested, make sure he is aware of the other risks associated with autoimmune diseases. He may develop diabetes (and require a lifelong supply of insulin), refectory celiac disease (where he will always be sick no matter what) or any matter of things. Once the autoimmunity is there, it can spread. You may need to give him the full picture, so that he has all the information upon which to make his decision.

He may even discover that he doesn't have the condition. However, you need to tell your son that there's more to life than food. Perhaps present your family with this question:

"Do we eat to live, or do we live to eat?"

It might just give others an appreciation of just how greedy some have become. Maintain a positive attitude about it and be willing to discuss these matters at length (if you need to).

All the best. :)

Edited by kellynolan82
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How come she wouldn't comply with the diet? I know others who don't comply even though they're told they're celiac because they just 'don't want to have to deal with it'.

Hope she's still alive and can get well again, especially should she decide to comply with the diet. :)

No. She died 12/16/10. She was an R.N. I'll never understand why she couldn't go gluten-free. I miss her and still wonder what the issue was. Maybe because she was a depression child?

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Maybe the reason your son is so angry and difficult is because he may not be eating right. :rolleyes:

You really need to explain to him the potential damage that may be occurring. He won't have to avoid gluten right away (especially if he decides to do the 'challenge' - this can be his opportunity to eat all his favourite foods as part of his 'farewell to gluten' journey).

If your son refuses to be tested, make sure he is aware of the other risks associated with autoimmune diseases. He may develop diabetes (and require a lifelong supply of insulin), refectory celiac disease (where he will always be sick no matter what) or any matter of things. Once the autoimmunity is there, it can spread. You may need to give him the full picture, so that he has all the information upon which to make his decision.

He may even discover that he doesn't have the condition. However, you need to tell your son that there's more to life than food. Perhaps present your family with this question:

"Do we eat to live, or do we live to eat?"

It might just give others an appreciation of just how greedy some have become. Maintain a positive attitude about it and be willing to discuss these matters at length (if you need to).

All the best. :)

Of course I've explained all these things to my son - I am his mother and I love him. He isn't interested in hearing it - I can't force him - he is 39 years old! We get along very well and have a very good relationship. He is a successful businessman and has 4 small children and a wife and two businesses so his life is very busy. He just doesn't want to deal with the idea that he may have celiac. He can't eat any wheat without getting sick. He has had stomach/digestion issues most of his life. I have explained the consequences of ignoring the possibility that he may have celiac....he has his free agency to choose and right now he chooses not to be tested.

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Sorry to hear people are not supportive! I am lucky to have family who saw my pain pre-diagnosis and realize how much better I am now gluten-free. BUT, my out of state best friend couldn't understand why I couldn't just eat gluten this one time for her big day. I flat out told her...If I ate one bite of her wedding cake, I would have to leave the reception and not see her the rest of the trip as I would be glued to the toilet in a lot of pain. Maybe not everyone is as open as me...but I have had so many people ask "what happens when you have gluten?" I just tell them lol. In the least graphic way possible, but I always explain how my body HATES gluten and anything to do with it, and attacks it, therefore, damaging my intestines leading to many side effects and ultimately maybe infertility or cancer. Everyone seems to understand then, and hopefully if they come across another celiac, they will have a better understanding for it!

Good luck!!!

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I bring my own food, and a pan to cook it in or a dish to microwave it in.

One thing that helped a relative to understand was to make a comparison to raw meat and germs. We all hear about not touching raw meat and then touching our food, right? Because just a few germs from raw meat can make us very ill.

A few molecules of peanut can make severely peanut allergic folks react.

And we're the same way: very tiny particles of gluten can hurt us a lot.

For whatever reason, even thought nearly everyone knows that tiny things like germs can hurt us, they don't seem to make the connection that our bodies can react to tiny amounts of OTHER things, too, like gluten. But once you can help them make the connection, sometimes that can help. :-)

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Sorry to hear people are not supportive! I am lucky to have family who saw my pain pre-diagnosis and realize how much better I am now gluten-free. BUT, my out of state best friend couldn't understand why I couldn't just eat gluten this one time for her big day. I flat out told her...If I ate one bite of her wedding cake, I would have to leave the reception and not see her the rest of the trip as I would be glued to the toilet in a lot of pain. Maybe not everyone is as open as me...but I have had so many people ask "what happens when you have gluten?" I just tell them lol. In the least graphic way possible, but I always explain how my body HATES gluten and anything to do with it, and attacks it, therefore, damaging my intestines leading to many side effects and ultimately maybe infertility or cancer. Everyone seems to understand then, and hopefully if they come across another celiac, they will have a better understanding for it!

Good luck!!!

I wouldn't get all overly defensive about this. Just tell her that just as little as 10mg gluten/day (i.e. ~1/500th of a slice of bread) may easily be enough to do damage that will take at least 6-8 weeks to heal.

Many studies indicate that, for individuals with celiac disease, the daily gluten tolerance threshold varies from (0.6 to 150)mg/day. Most individuals are thought to react somewhere between a daily level of 50 and 100mg gluten.

Your friend probably wants you to reason with her and actually be able to justify it beyond "my body HATES gluten". Try not to be awkward or stress about it. Having been a coeliac for over 12 years myself, I have had many experiences (both good and bad). I find that my best way of being able to learn and understand is by thinking visually.

Re: The Wedding Cake

My friend, who has been coeliac for nearly as long as myself, has also avoided gluten over the years (but does eat out a lot :rolleyes: ) and is vigilant about avoiding gluten (at least most of the time, anyway... :unsure: ).

Recently, another friend of mine had a wedding and both my friend and I were invited to the ceremony and reception. The wedding cake was to die for and I could barely resist the temptation myself. In the end, I decided to pass on it. The same, however, could not be said about my coeliac friend. I have posted on this topic at and thought it might be of interest to you.

Maybe you could show it to your best friend, to help spread awareness? :huh:

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For right now I mostly avoid the situation since I have 2 young children, a 5 year old who has upset family by asking about gluten and a 20 month old who doesn't really talk yet, so it is difficult for them to understand. And no one seems to understand my husband's decision to go completely gluten free with us (he didn't want to cc us and we found out there his grandfather may have had celiac so he decided to just not ever eat gluten again). I was going over to my mother's house occasionally and she did cook gluten free for us, but then I realized that she didn't really understand the danger of cc so I don't really go over there for food anymore, especially since my sister lives there and could care less (even though they both have stomach issues like I did before I went gluten free, they will not be tested or try the diet). It's tough, but like I said I pretty much avoid the situation and just try and cook really awesome meals for my girls.

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I wouldn't get all overly defensive about this. Just tell her that just as little as 10mg gluten/day (i.e. ~1/500th of a slice of bread) may easily be enough to do damage that will take at least 6-8 weeks to heal.

Many studies indicate that, for individuals with celiac disease, the daily gluten tolerance threshold varies from (0.6 to 150)mg/day. Most individuals are thought to react somewhere between a daily level of 50 and 100mg gluten.

Your friend probably wants you to reason with her and actually be able to justify it beyond "my body HATES gluten". Try not to be awkward or stress about it. Having been a coeliac for over 12 years myself, I have had many experiences (both good and bad). I find that my best way of being able to learn and understand is by thinking visually.

Re: The Wedding Cake

My friend, who has been coeliac for nearly as long as myself, has also avoided gluten over the years (but does eat out a lot :rolleyes: ) and is vigilant about avoiding gluten (at least most of the time, anyway... :unsure: ).

Recently, another friend of mine had a wedding and both my friend and I were invited to the ceremony and reception. The wedding cake was to die for and I could barely resist the temptation myself. In the end, I decided to pass on it. The same, however, could not be said about my coeliac friend. I have posted on this topic at and thought it might be of interest to you.

Maybe you could show it to your best friend, to help spread awareness? :huh:

Oh I didn't mean to make it sound like I get defensive. I am far from mean or angry about it. I just simply tell people how it affects me. That's all I was getting at :) Thanks for the other post though!! We have so many weddings coming up to go to.

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How do you deal with your extended family when they roll their eyes because they think you've gone overboard with the issue of being completely gluten-free and try to avoid CC?

What do you do when you visit their homes? Do you take your own food?

Interesting question.

I started gluten-free about two months ago. Since I'm the cook in the household our gluten containing food is almost nil. I keep a few things for my son (age 9) and husband.

My son is semi-tolerant of the gluten-free idea. Most foods he likes the taste of... but he does ask me constantly why I am so worried about gluten - usually in an impatient or nasty tone.

As I type this, he is in the bathroom with diarrhea after eating a sandwich made from a wheat bun (one of the few gluten products I keep at home).

I wonder if I inadvertently threw him into a low gluten diet and now he's getting "glutened"? He still eats wheat at school and when we're out.

And the "poison" metaphor works well. If not, I just say I'm "allergic" to wheat. Most people get that... and I tell them I break out in a horrible rash.

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My dad made me really angry yesterday. I've tried to explain celiac to him. He refuses to believe anything. Here are some comments he made to me:

"You're on the borderline of being ridiculous, and I take issue with that."

"Doctors have a name for everything these days. Back when I was a kid we didn't have all these convoluted so-called diseases. It was called an upset stomach and you got over it."

"So I suppose now you're going to get the idea in your head to become vegetarian too."

"I'll buy you a Krispy Kreme and we'll see if you don't decide that it's worth a little tummy upset to eat it."

I'm so angry with him. Why is he being such a jerk?

Of course, this is the same man who had an emergency double by-pass surgery a year and a half ago, and he has not changed his diet at all. Still eats his steaks, burgers, corn chips, and whole milk.

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I know it's easier said then done, but I think we need to figure out a way to just let the comments roll off our backs. It hurts, it ticks us off, sometimes makes us want to cry, but if we let it bother us...it is only us that hurts in the long run. Of course this is coming from the one who tries to stand up to her mother and can't seem to do it, I always go back there for dinner even when I say it won't because I can't seem to say no. So instead I will go over there for dinner tonight and worry about what's on my food since I didn't prepare it(even though my mom is careful about ingredients, she doesn't really believe in the dangers of cc) and cry when I get home because I know that their "IBS" is probably celiac and I really don't want to watch it anymore. Sorry, I was trying to encourage you. Good luck with getting your family to understand.

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If I know I'm going to someone's house for dinner I try to call ahead and find out what they are making. If it's something that isn't going to work for me I try to bring something similar that I can eat. Usually, when I get there I stay in the kitchen so I can monitor the food prep. Sometimes I can tell it's slightly annoying to people that I watch what they are doing but my health is important.

Not saying you should make yourself sick but some of my family members and friends who use to give me a hard time backed off a lot after I got really sick from cc. I think because sometimes the symptoms aren't obvious to others that it's easy for people to forget so just try to be patient. I'm not the best person to say that because I've gotten snippy with people for giving me a hard time but gluten shouldn't be something that ruins relationships too.

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My bff understood CC, had cooked for me in the past and I had no problems - I watched her like a hawk! This summer we stayed with her for 3 weeks and I kept getting sick, I had watched & helped her cook but then .... the light bulb went on. She had been using a sponge to wipe up the counters for both the gluten side and my side. :( I felt so stupid!! A switch to paper towel and all was well.

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How do you deal with your extended family when they roll their eyes because they think you've gone overboard with the issue of being completely gluten-free and try to avoid CC?

What do you do when you visit their homes? Do you take your own food?

I am fortunate enough to have family members who are both dairy and gluten intolerant and for those family members they understand and it is not an issue. The others have a much harder time relating and to be quite honest I think more of my family have an issue than they realize. I have learned not to talk about it, they don't understand and they don't want to hear it. I don't explain or say I can't have something.....if I am offered something I can't have I just tell them "no thank." Same with dinners out with friends. I do not take food with me to other people's houses.....I figure I can always get something later.

This summer visiting a freind I had not seen in years, she served ribs with BBQ sauce already on them. For me that was not good because most BBQ sauces have either wheat or high fructose and I can't have either. She had also made a huge pasta salad, beans, and there were chips. Wow, right? I chose the rib that looked like it got skipped on the sauce, had a spoon of beans and chips. I felt bad as she had cooked large amounts of everything but I thought it would be worst to explain. The BBQ sause got me.

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    • 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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