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Still Angry Sometimes After 2 Years
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99 posts in this topic

The line is most definitely blurred, but to not distinguish Asperger's has serious implications in education, among other factors.

To avoid getting too off topic, I'd be happy to discuss this via private message. Both my father and my son have Asperger's.

We could continue via PM if you'd like, but I find that open discussions are usually better. Even more so if there are others out there lurking who are looking for this type of information.

For me, it doesn't matter if someone labels me HFA or an "aspie" - either way, it is a label, and either way there will be those who think "less" of me because of it. And I have had doctors tell me that there is no way I can have Asperger's because I have a job, a husband, a degree, etc., and I know that they are wrong (these are GP's who don't specialize in this stuff anyway, much like how they don't specialize in gluten intolerance / celiac...), but I know that they are wrong.

Luckily for me, I was not diagnosed until after I had exited the school system (it was a rough time, I'll admit...), but it allowed me to learn how to survive in a world of neurotypicals (NT's). I can't specifically comment as to the implications of being labelled "HFA" vs. "aspie" when it comes to schooling, because I never had to deal with that. Also, I think that the way autistic children are handled in the school system varies from location to location (I am in Canada).

If they eliminate Asperger's from the DSM, then it is possible that people like your father and son won't be recognized as being on the autism spectrum at all. I think that is a greater negative than having your label shifted to HFA.

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We could continue via PM if you'd like, but I find that open discussions are usually better. Even more so if there are others out there lurking who are looking for this type of information.

For me, it doesn't matter if someone labels me HFA or an "aspie" - either way, it is a label, and either way there will be those who think "less" of me because of it. And I have had doctors tell me that there is no way I can have Asperger's because I have a job, a husband, a degree, etc., and I know that they are wrong (these are GP's who don't specialize in this stuff anyway, much like how they don't specialize in gluten intolerance / celiac...), but I know that they are wrong.

Luckily for me, I was not diagnosed until after I had exited the school system (it was a rough time, I'll admit...), but it allowed me to learn how to survive in a world of neurotypicals (NT's). I can't specifically comment as to the implications of being labelled "HFA" vs. "aspie" when it comes to schooling, because I never had to deal with that. Also, I think that the way autistic children are handled in the school system varies from location to location (I am in Canada).

If they eliminate Asperger's from the DSM, then it is possible that people like your father and son won't be recognized as being on the autism spectrum at all. I think that is a greater negative than having your label shifted to HFA.

My only reason for mentioning PM is because this is off-topic from the original poster's comments.

I have always used the terms Asperger's and HFA interchangeably. Those Aspies (and parents of, as I typically interact more with children than adults) that I've dealt with are not opposed to calling themselves autistic, but to having the Asperger's label removed entirely. Research funding is a main component of most arguments I've heard.

And you are correct that there is a potential for some people to no longer qualify for the label. That does concern me, as laws regarding special education services in public schools (and universities) may no longer apply.

Even the diagnosis for Asperger's is slightly varied - specifically regarding the presence (or lack thereof) of a language delay before age 5. Dr. Tony Atwood mentions in his book the presence of a language delay not ruling out Asperger's, while some doctors refuse to test for it with a language delay.

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My only reason for mentioning PM is because this is off-topic from the original poster's comments.

It is a great topic and should be continued given the number of people that try the gluten-free diet for Autism, and other issues.

Please do start a separate thread about it so SSG can get feedback for her rant. :)

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With respect to the original OP, I would suggest that a new thread on Celiac and Aspergers. I would find that interesting, as I would suspect other members would as well.

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Many people with diagnosed celiac with blood tests and biopsies and everything that makes the label inarguable also notice that they seem to become more sensitive to gluten when they stop it. Does that mean they do not have it either? It just does not make sense to me to use the statement to suggest that "non-celiac" will get more sensitive; therefore, they are not celiac when the same thing happens to a diagnosed celiac.

Many have varying degrees of it from massive immediate spells to gradual building up. It makes a lot of sense that with so many varying degrees, they would also show varying stages under lab testing. Add to that that many docs do not even know what to look for.

It just feels careless to me to suggest that someone might not have celiac if the biopsy or blood test does not show it. The treatment is not dangerous, so even if someone is wrong, who cares so long as they get relief. Now granted a person should do what they an to ensure a correct diagnosis within reason and be sure to get checked out if they find they are not improving, but there are a LOT of GIs who will take a positive reaction to going gluten-free as a positive diagnostic test. And yes, some refuse the term unless everything shows it, labs, biopsy, etc.

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It is a great topic and should be continued given the number of people that try the gluten-free diet for Autism, and other issues.

Please do start a separate thread about it so SSG can get feedback for her rant. :)

LOL Yes back to my rant!!!

The fact that there has been an argument about this just goes right along with the nonsense that happens with testing. It's not cut and dry and the paths aren't clear. There aren't too many "typical" celiacs because it presents so many ways, further complicating matters.

I told my new GI how I was talked out of testing 8 years ago. He is an exceptional doctor in regards to celiac. He said a lot has changed in 8 years and maybe he would've misdiagnosed me back then too. That gave me hope that there is growth at least on his part and maybe on the part of other docs. I hope so.

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Many people with diagnosed celiac with blood tests and biopsies and everything that makes the label inarguable also notice that they seem to become more sensitive to gluten when they stop it. Does that mean they do not have it either? It just does not make sense to me to use the statement to suggest that "non-celiac" will get more sensitive; therefore, they are not celiac when the same thing happens to a diagnosed celiac.

If you are referring to my comments, I never mentioned either people with celiac or without celiac. An anecdotal symptom is that *some* people experience an increased sensitivity to gluten after going gluten-free.

The increased sensitivity to gluten is different than the internal damage that is happening with celiac disease.

It just feels careless to me to suggest that someone might not have celiac if the biopsy or blood test does not show it.

I'm a teacher.

If I refer a student for testing for special education services and all the tests come back to say that that student does not have a learning disability of some sort, I am not going to insist they have a learning disability.

However, I may change something I do for them in classroom when I find that it makes them more successful - including offering accommodations and/or modifications that are very similar to those offered to students with learning disabilities. This positive reaction to the change in the classroom does not mean that I can now say they have a learning disability.

It would seem careless to me for a doctor to diagnose celiac disease in a patient where the tests come back negative. Telling them to try a gluten-free diet isn't careless, of course. Dietary response *alone* can say that there is an intolerance of gluten, but it can not diagnose the flattening (or lack thereof) of the villi in the small intestines.

If your body doesn't respond well to gluten - don't eat it. If your body doesn't respond well to whatever - don't eat it.

There is a difference between NCGI and Celiac Disease. One is not greater or more important than the other.

From this website: http://www.celiac.com/articles/22491/1/Study-Shows-Gluten-Sensitivity-and-Celiac-Disease-Clinically-Different/Page1.html

My whole point at the beginning of the thread was that both conditions need to better studied. More doctors and researchers need to be aware of *both* conditions so that they can look at them separately. If a patient comes to them who tests negative for celiac, the doctor can think of NCGI and suggest a gluten-free diet as a treatment and then follow up to check on the patient's response.

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is it time to end this topic?

or is it revealing?

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I think part of the problem here is that the tests aren't totally reliable. There are cases where someone tests negative but does have intestinal damage-- just beyond the range of the scope or in spots that weren't biopsied. So you're absolutely right that both need to be studied more. I just don't think we can say with 100% certainty that everyone who tests negative for celiac doesn't have it. Both the blood tests and the biopsies have false negatives sometimes. So it's possible for someone to get caught in the false negative range for both.

I had negative blood tests and a negative biopsy for celiac. However, nobody ever ordered the full panel of blood tests, and the number of biopsies taken was less than some of the recommendations I've seen. More importantly, my dad has blood and biopsy positive celiac, my genetic tests show risk factors. Knowing that, and knowing how I responded to removing gluten and how I respond to traces that sneak in, it's actually safer for me to act as if I DO have celiac despite the negative tests.

I understand your original point and am not trying to jump into the argument here-- I just think there are some shades of gray. Which again points to what you're saying about needing to study both further.

Really not trying to add fuel to the argument here. Just trying to pull together the arguments and show the common ground. Probably failing, so feel free to ignore my post. This convo has probably gone on long enough.

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The bloods alone have a up to a 40% false negative rate in children under 5 and around 15% false negative in adults, and the damage it the intestines is often patchy - so can be missed in the biopsy samples. That is actually common knowlege among Celiac specialists and in pretty much every medical journal.Negative test does not always mean you are not celiac- I can understand you holding onto the point if the tests were like 99% acurate - but they aren't.

Although I do agree - more studies are needed for all gluten intolerance and Celiac!

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And while your analogy is like comparing apple and oranges in many respects (and for the record, it is Asperger's Syndrome, not disease - and note the correct spelling - every effort at making it sound less like like a sandwich made of rear ends is a plus,) the Asperger's community is currently fighting against the inclusion of Asperger's Syndrome into the manual as simply "Autism."

Katrala, I apologize for my typo. Usually I'm a better speller than that and I certainly didn't mean to offend anyone with Asperger's Syndrome or Autism. My point with the comparison is that at this time Asperger's is considered part of a spectrum of Autism, which acknowledges that there are people with varying degrees of issues, from mild symptoms that still allow them to live a normal life to very severly autistic people who have more severe difficulties.

But I still stand by my statement that I think Celiac is just a small part of the whole gluten intolerance spectrum and that doctors are only treating one small part of the problem, mainly the gastro issues. Many people get treated because of gastro issues, but for many of us there are other issues that are just as severe. Just yesterday someone posted on this board that they felt suicidal as a result of their gluten issues. To me that is a much more serious issue than having constipation or bloating.

From my perspective you seem to think of this as a very black and white issue. Either you have Celiac or you don't. I'm thinking of it more as a shades of gray kind of issue. I guess we'll just have to agree to disagree. :)

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Celtic Queen your point is important. Many celiacs don't even have gastro issues at all and most have so many other symptoms on top of gastro. When they do studies, I don't think they take that into account either and that's important. Symptoms should mean all symptoms not just gastro ones.

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SometimesI have little burbles of anger that spurt up when I'm especially tired orfrustrated or stressed. If any of the doctors along the way over the past 38years had been worth their salt, maybe my health would have been better andthere wouldn't have been so many problems. My birth mother had a "wheatallergy" and a weird rash. When I was a baby I was diagnosed with foodallergies that the doctor said I would outgrow; my dad didn't tell me aboutthese things until I was at the end of my rope three years ago. I startedhaving horrible digestive issues as a teen. I would stink up the bathroomsomething fierce and spend the time between classes in the restroom at school.My belly hurt. I associated them with milk and refused dairy for years, whichstopped the D and bloating. My folks didn't believe me and told me it was in myhead. (My gluten issues are more neuro than gastro; that's the way I tell what's got me when I've been bit now.)

When I moved to Northern Ireland for grad school, my diet changed. I ate a lotof whole, fresh foods, skipped the bread and pasta in favor of cheaper rice. I refer to that year as the year I awoke from a dream.Everything was so vivid and clear, like a fog was lifted from my head. As soonas I moved back to America, my body seemed to slow down again. It continued toslow down even though I took up dance. I was tired and achy all the time andfelt like sleeping. I gained weight like crazy in spite of a heavy danceschedule and walking everywhere (no car). Doctors said my joints were fine whenI complained of joint pain. They said I was healthy when I said I wasexhausted. They kept brushing me off.

A friend's husband had this horrid bodybuilder diet that consisted of rice, turkey,and fiber tablets and pretty much nothing else--no gluten or dairy. I decidedto try it to lose the weight. I dropped four or five dress sizes and feltphenomenal, so alive and awake. Nothing hurt, and my stomach, which alwayslooked pregnant, was flat for the first time.

Gradually I went back to my old eating habits. And the migraines began. Istarted getting clumsy--bumping into things, dropping things, falling down. Itwas a really slow, gradual process over time, but I started feeling worse andgot to a point where I didn't even remember what it was like to feel goodanymore. I couldn't climb the stairs without getting winded or complete onedance, much less a whole set. I wanted to sleep all the time. I became a shellof a person. My heart would flutter and squeeze; I was afraid I was havinglittle heart attacks. My joints hurt so bad. My whole left side was tingly or numb,and the buzzing in my head finally became a constant companion. D was my"normal." And doctor after doctor said I was fine and in good health.One told me to stop bothering him. Not one made a dietary association. One saidI might have some allergies and gave me some Allegra to help with thebreathing.

Please tell me how amigraine for 20+ days out of the month, numbness on one side of the body,lethargy to the point of needing a nap after cooking breakfast following a fullnight

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Katrala, I apologize for my typo. Usually I'm a better speller than that and I certainly didn't mean to offend anyone with Asperger's Syndrome or Autism.

No big deal - I was kidding around. :)

My point with the comparison is that at this time Asperger's is considered part of a spectrum of Autism, which acknowledges that there are people with varying degrees of issues, from mild symptoms that still allow them to live a normal life to very severly autistic people who have more severe difficulties.

I see your view here. While I agree that the symptoms of both NCGI and Celiac can range from "no big deal" to debilitating, it's the symptoms that I feel are on that spectrum, not the disorders themselves.

But I still stand by my statement that I think Celiac is just a small part of the whole gluten intolerance spectrum

Oh, I agree that Celiac is an intolerance to gluten.

There are different types of intolerances to gluten, including Celiac and NCGI (I say including because there may be other defined gluten-related intolerances that I'm not aware of.)

From my perspective you seem to think of this as a very black and white issue. Either you have Celiac or you don't. I'm thinking of it more as a shades of gray kind of issue. I guess we'll just have to agree to disagree. :)

Yes, but I never said that just because a person doesn't have Celiac doesn't mean that they don't have a serious issue with gluten. In fact, I assume that there are NCGI folks who have debilitating gluten-related issues.

Is it possible for a person to have both Celiac and NCGI? I assume the two aren't mutually exclusive, although it would likely be hard to diagnose.

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Sandsurfgirl, boy can I relate to the angry! For the most part I try to just get on with my life as best I can, but sometimes when I think of why my life is the way it is it makes me very angry. You see, I was a sickly child with no energy and high anxiety, among other issues. I tested gluten intolerant on top of other food intolerances but nobody ever explained what that meant to me or my parents (so far as I know), and after being on an extremely limited diet for a time and not seeing any improvement I went off the diet and my parents didn't think twice about it. Not one doctor suggested that I be tested for celiac. After that I was taken to "mental health professionals" and my lack of energy and anxiety were declared to be "in my head."

Another round of testing later in life and I tested gluten intolerant among other things yet again. Again nobody explained what that meant and after I got better on an elimination diet and supplement regimen I went back on wheat. I had to stop the supplements because I couldn't afford them any longer. ($300+ a month) I didn't notice any changes in the beginning but over time I was getting progressively worse. I eventually ended up bed or wheelchair bound because of pain and lack of energy. I'm finally diagnosed celiac and starting to get some semblance of a life back by going gluten free.

So, yeah, sometimes I get very angry because I never got to lead the life I wanted and too many people, doctors included, blamed/blame it on me and my head. At least in my life I see a direct relationship between gluten intolerance and celiac. Too bad nobody else did before it took away the life I might have had.

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Dear Lord where do I start with this? UGH.

First of all, this woman is sick and desperate for answers, so desperate she is repeating a very invasive test and your word for her is silly? Silly? That poor woman. Your cavalier attitude is insensitive and cruel. Unbelievable from another celiac, but maybe you just didn't suffer enough to get some compassion. You've had it easy so therefore everyone else is an idiot when they don't have it as easy and they have to fight for answers.

"Celiac and gluten sensitivity are different." So WHAT? The intolerant/sensitive people on here and the self diagnosed people on here have been just as sick if not sicker than many of the celiacs. And as Beebs pointed out, the TESTS ARE NOT ACCURATE much of the time. You have no choice but to diagnose yourself in most cases. There aren't that many of us who had cut and dry diagnosis like you did. Lucky you. And if someone is intolerant and not full blown celiac they will likely have NO CHOICE but to self diagnose because it would be a rare doctor who could diagnose that.

Your statement about not being an "self/internet diagnosis advocate" unless there are other factors like positive family history just shows me how much you haven't read. It's likely that 80% of celiacs are undiagnosed which means they may be the first one in their family to even pursue diagnosis. I am the first one in my family to get diagnosed but I'm not the first celiac. I would bet my life savings that if some of relatives who have passed on could have been tested they would've come up positive.

You speak about this with such a condscending tone as if people who have self diagnosed are idiots and that poor woman is an idiot. Calling her silly is just sad.

Dietary response IS a valid diagnostic tool. You are just plain wrong when you say that everybody feels better off of gluten. Only people with a problem with gluten are going to feel better not eating it. That's a ridiculous statement. Eating gluten free can be just as full of junk food as any other diet. Eating healthy has nothing to do with gluten free. People who can eat gluten are better off in terms of fiber consumption because most of our stuff is low in fiber and high in calories and starches.

My son came up negative on the blood tests because he was already eating gluten light by the time he got tested. We saw a direct correlation between him eating gluten and onset of symptoms. No fucking way was I going to subject my 6 year old to an endoscopy just to be sure and neither was his pediatrician. She refuses to scope kids unless it is absolutely a necessity. It's risky and invasive. It is surgery! We decided to put him on the diet and see what happened. It was life changing for him. My previously very ill child became strong and healthy and his whole life changed. If he gets glutened by accident he gets sick. Period. There's the diagnosis.

It's people who think like you who are the problem and why there is so much suffering by people who don't fit into the box, the one that you were lucky enough to fit into. And it's doctors with your type of attitude that causes real long term suffering and even death to those who don't get answers.

On behalf of myself and my daughter...diagnosed by elimination diet, and then experiencing the LIFE CHANGING results...THANK YOU for this post.

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On behalf of myself and my daughter...diagnosed by elimination diet, and then experiencing the LIFE CHANGING results...THANK YOU for this post.

You're welcome :) My son is a different child after going gluten free despite negative blood tests. His baby and toddler years were so hard. So very very hard. He had quit growing and after he went gluten free he is normal height.

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You're welcome :) My son is a different child after going gluten free despite negative blood tests. His baby and toddler years were so hard. So very very hard. He had quit growing and after he went gluten free he is normal height.

Same with my daughter. She is 8 and is actually quickly outgrowing her clothes and shoes. Expensive, but I'm so happy. She's so much more mellow and happy gluten free. So am I, come to think of it.

Also, thanks for not backing down. So often I just ignore the naysayers, but it's important that those of us who are self diagnosed are heard.

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According to The University of Chicago Celiac Disease Center, "An average child visits eight pediatricians before being correctly diagnosed." Those statistics make me sick, and angry. I don't have children due to infertility, and applaud you mothers who figured things out on your own through research and trial.

We all know you aren't doing it for the fun or convenience of it! :) Yay for you!

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I have always used the terms Asperger's and HFA interchangeably.

I did laugh a bit to myself over this. You are willing to use the terms Asperger's and HFA interchangeably (even though, technically, they are different diagnoses - although they have many similarities)... but you are unwilling to accept someone using the terms Celiac and gluten intolerant interchangeably (different diagnoses - although they have many similarities). I don't intend this to be argumentative. I'm simply making an observation.

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According to The University of Chicago Celiac Disease Center, "An average child visits eight pediatricians before being correctly diagnosed." Those statistics make me sick, and angry. I don't have children due to infertility, and applaud you mothers who figured things out on your own through research and trial.

We all know you aren't doing it for the fun or convenience of it! :) Yay for you!

Between his seizures and all his other issues, we went to about 6 docs. Even the latest one who is very good about celiac said to just to gluten light on him but I knew better.

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I did laugh a bit to myself over this. You are willing to use the terms Asperger's and HFA interchangeably (even though, technically, they are different diagnoses - although they have many similarities)... but you are unwilling to accept someone using the terms Celiac and gluten intolerant interchangeably (different diagnoses - although they have many similarities). I don't intend this to be argumentative. I'm simply making an observation.

I understand your view and appreciate you disagreeing with me respectfully.

The thing is I consider AS to be HFA. Simply put, the upper range of the spectrum being AS.

I believe those with celiac to be intolerant of gluten. However, I don't believe that all people intolerant of gluten have celiac disease.

I suppose my distinction is due to looking at the autism spectrum as an ability to function with with NTs. It's the high/low issue. But if you disregard that, I see your point.

I'm not sure how well I'm explaining myself above. It's been a crazy day and I'm half asleep.

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When it all gets down to it, often labels are just labels for the sake of labels. I used to volunteer in our school reading program (elementary) here, and in our schools there was no such thing as dyslexia, because they didn't want to put that label on the child. So the students who had problems reading got "labelled" as slow learners or dumb, or whatever else cruel came into some little minds, and they were pulled out of regular class for "reading recovery program". Now they have changed their minds and children once again have dyslexia, and I think how much better to have that label. A reason for the symptoms, not dumb. And a reason for the symptoms of IBS, not really irritable bowel syndrome, and it really doesn't matter to me what form of gluten intolerance anyone has - in fact, I don't even know what form I have :o I just know I have it, and if it suits my purposes to get someone to understand its importance I will refer to it as celiac, because no one can prove I do not have it since they never took the opportunity to test me when they could have.

Yes, we can and should be angry at the failure to diagnose what is so plain before the eyes, but it wasn't really until about 2003 that it became widely known and by that time I had psoriatic arthritis, so I needed to be diagnosed before that. My personal opinion is that it is rather like splitting hairs saying that celiac is "worse" than gluten intolerance. Whatever form of gluten intolerance you have in our gluten-laden world, it stinks. Just as it stinks that kids have a difficult time learning to read (but I think it is worse if they are labelled dumb rather than dyslexic, personally).

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Personally, I simply tell everyone that I am "allergic to gluten." Sometimes (if they are somewhat knowledgeable about gluten) they ask, "Do you have Celiac?" and I say "Yes."

But I am self diagnosed via an elimination diet.

I want people to understand the seriousness of my gluten issues - to the point where I don't care if what I'm saying is actually true or not. If people asked me if I have Celiac, and my answer was, "Well maybe, or maybe it's gluten intolerance. I was never officially diagnosed, I figured it out on my own," I really don't think they'd take me as seriously as I want them to.

I also find the word "allergic" helps when people have never heard of gluten. They think peanut allergy, and that suits me fine. Then they don't get upset when I refuse to eat their delicious, home made cookies.

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Personally, I simply tell everyone that I am "allergic to gluten." Sometimes (if they are somewhat knowledgeable about gluten) they ask, "Do you have Celiac?" and I say "Yes."

But I am self diagnosed via an elimination diet.

I want people to understand the seriousness of my gluten issues - to the point where I don't care if what I'm saying is actually true or not. If people asked me if I have Celiac, and my answer was, "Well maybe, or maybe it's gluten intolerance. I was never officially diagnosed, I figured it out on my own," I really don't think they'd take me as seriously as I want them to.

I also find the word "allergic" helps when people have never heard of gluten. They think peanut allergy, and that suits me fine. Then they don't get upset when I refuse to eat their delicious, home made cookies.

Yes and yes and yes! Saying that you have celiac does make others take it more seriously and that has real world consequences from family relationships, to friendships, to people keeping you safe and not glutening you on accident or on purpose.

I always tell people to use the words allergic and allergy in restaurants and eating situations because it makes them take notice. Allergy makes them think of anaphylaxis and other scary things. Intolerance makes them roll their eyes.

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