Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: Jane, who doesn’t have an official diagnosis and is wondering if it’s okay to call herself a celiac.
Two quick notes:
1) Today is my 400th blog post. Not sure why I mention it but since it’s a nice round number, I figured maybe it was worth something. Perhaps I’m wrong. Okay…moving on.
2) My life is crazy busy right now and while I still write the posts and I read all of the comments, I don’t always have the time to respond as much as I’d like to. I just want to say a huge thanks to everyone who keeps the conversation going here. It does NOT go unnoticed and it does NOT go unappreciated. I heart you all 🙂
Now back to your regularly scheduled programming.
I hate lies and I hate people who lie. But I love today’s question. As much as it bites having celiac, I’m sure as heck glad to actually have a diagnosis.
But there are many who don’t have the benefit of an official diagnosis, whether it’s due to the cost of the endoscopy, not willing to eat gluten for accurate results or just plain old crappy doctors.
Let’s listen in on one woman’s dilemma. The floor is all yours Jane…
After years of curling up in the fetal position, feeling like someone was stabbing me in the stomach, suffering from severe bowel problems, being nauseous, malnourished, and feeling plain rotten, my doctors couldn’t figure out what was wrong. Some thought maybe I had gallbladder problems, then said it was severe IBS, yet the problems continued.
My mom recommended I go on a gluten free diet after hearing Jennifer Esposito’s story. Before I went gluten free, my mom finally convinced my doctor to do the blood test for gluten. It came back negative. The doctor said that we could do the endoscopic procedure to test for celiac, but that it was very expensive. She recommended I go on a strictly gluten free diet to see if it did anything.
Weeks after, my symptoms cleared. I was happier, feeling stronger than ever, no stomach issues, and improvement in my bowel movements. I finally felt ALIVE again!
My question for you is….when people ask why I have to eat gluten free I often respond by saying “I have celiac disease.” Is this an okay response? I feel like I am misleading them in some way because I never got the endoscopic procedure done. But if I say that I have a “gluten allergy” they think I am lying.
Help me Mr. Dude!
You have my absolute, complete, 100% blessing to say you have celiac disease.
You may have it. You may not. You may never know. Who cares? You’re completely gluten-free for life and you’re feeling better. To me…that’s all that matters regardless of what the heck you want to call it.
Yeah, I know I said I hate lies and liars, but if saying you have celiac makes you think people will take you more seriously (which in turn will keep you safer), then bending the truth isn’t going to hurt anyone.
Sometimes, a little white lie is the right call. Just ask Jim Carrey. You agree folks?
108 thoughts on “Is it Okay to Lie About Having Celiac Disease?”
I am in the same boat as Jane. Similiar story as well. Glad you are feeling better with the gf diet. It is hard to explain to some people who have no idea what gluten is or where it is found. If the Celiac disease line works, go for it. I sometimes say the same thing. Its easier and less frustrating than going through the whole explanation time after time.
Someone who calls himself the “Gluten-Dude” has posted false information on his website concerning my gluten-free cookies. The titled his posting: “Dear Bart & Judy: Your Cookies Aren’t Gluten-Free”. His story is patently false.
I have emailed him and have attempted to contact him through his website / Facebook, blog and email, he refuses to respond.
Our cookies have been tested by an independent test laboratory to 5.6ppm, which is far below the Federal Standard of 20ppm. I actually spent months developing my own gluten-free flour because virtually all other commercially available flours didn’t measure up.
When someone knowingly produces false and misleading information, he is not servicing the community he purports to serve. Seems he’s exploiting rather than serving.
Thank you, Bart Greenhut, Bart@bartsbakery.com
Bart & Judy’s Bakery, home of “The Best Gluten-Free Cookies In The World® [not kidding]” (www.bartsbakery.com)
Is it true that the package says, “May contain wheat?” Is it true that you use the same equipment to make both wheat based flour AND gluten free cookies? And is it true that there’s a sign in your cafe that says you “cannot ensure that cross contamination does not occur…,” and that “[You} DO NOT RECOMMEND consumption of [your] gluten free foods by those with celiac disease?”
If any of that is true, then I’m going to stick with Gluten Dude and stay away from your products because they are totally not worth me getting sick.
Bart…I’ve contacted several times via Facebook. I asked you very specific questions about how you produce your product. I am not looking to harm your company in any way, shape or form. My allegiance though is to the community.
I’m a ZERO ppm Celiac who had cancer for last 3 years from eating gluten. “5.6 ppm” is not Gluten Free for me regardless of how the federal government defines GF and it will CERTAINLY kill me. I’m one of the people who Gluten Dude is protecting and I greatly appreciate his concern, research and efforts. If you answer “yes” to any of the questions KV asked you above then your products are not GLUTEN FREE for me and I greatly appreciate Gluten Dude telling me so. I certainly don’t care to whom you sell your products and I’m sure Gluten Dude doesn’t either but they are apparently not for me and Gluten Dude is protecting me.
I look forward to your reply and your responses to KV’s questions.
Just to be clear Hap, ZERO is an impossible standard to have. As Irish likes to say, we live in a cross contaminated world. The reason I’m tough on Bart’s cookies is for the explicit reasons I state on the blog post. If I knew every single cookie test at 5ppm I would not argue. But to me, with how the make all of their cookies, I don’t think it’s possible. And if they want to market to celiacs, they should consider changing how they make their gfree cookies.
I’m not slamming Bart personally. I am all for small businesses and I want to see them succeed.
yup! I am afraid that’s true. We live in a gluten- filled world. As my friend Peter says” The Earth is a shared facility.”
Every chemical analysis has a metric protection limit
and the lowest amount a method can measure. It has to be above zero. Therefore, we can never measure ” to zero”.
I thought it was very interesting that Dr. Fasano mentioned that in his presentation a few weeks ago–that “you cannot measure to zero in biology, or physics or anything” as it is subject to error. (I am pretty sure I kicked you when he said that because we have talked about this before ) lol
Yep…still have the bruise to prove it 😉
sorry ’bout that, kiddo. 😉 lol
Sure Dude, I understand from a legal/technical/chemical position. However, I promulgated “ZERO ppm” as my own personal gluten free standard regardless of what our hapless federal government thinks after I drank a couple of 3ppm Damn Daura and swore I’d never do it again when I was “newbier” than I am now.
Also as much as I liked Amy’s GF Soups, I also swore off “shared wheat facilities” products as I stated in some earlier comments.
I don’t put anything in my mouth unless it is as naturally, really & truly, Zero ppm gluten free as possible and as free from CC as humanly possible. My DH and lymph nodes are as clear as they have been in 4 yrs so this program is working. It’s serious when I stop playing golf! My list of food “no nos” is getting pretty long but I’m getting well. I suffered way too long. As “delusionally optimistic” as I have always been, this disease has taken me to some very dark locales – darker than I ever thought I would visit.
I can see my Jack Nicklaus golf course from my window and I’m doing everything I can to get back out there by this Fall. I’ve got no ill will toward Bart, but if he is producing at 5.6 ppm in a shared wheat facility anywhere in sight I appreciate you telling me.
As always, I thank you and Irish (did you notice?) for all each of you have done! Irish, thanks so much for John Pinette! I’ve laughed so much when I really needed to laugh. “Look again – maybe it’s only cancer!!!”
Gluten Freeeeee (really free) Forever!
We’re on the same page Hap. I wouldn’t touch a Daura, Omission or anything that is made from gluten. And I’m with you on Amy’s also. I just want to make sure that although we want NO gluten, we can’t demand 0ppm, as there is no test for it. That’s all I’m trying to say.
I understand what you’re saying and I agree. I’m not demanding Zero ppm from Bart or anyone else’s products. I’m also fine with you clarifying that I am not demanding Zero ppm from any product. Bart can produce whatever and sell to whoever he desires and I will be the first to wish Bart every success. I’ve personally represented more than 100 restaurants and 200 corporations (probably similar to Bart) during the last 30 yrs.
However, Bart needs to understand that I can legally choose not to buy Bart’s products because they are either not naturally gluten free or they contain even 5.6 ppm of gluten. Bart can’t legally interfere with either (1) my right to that knowledge about his products, (2) with you if you provide that knowledge to me and/or (3) my choice to purchase or not purchase any product I desire. Even 5.6 ppm of gluten is gluten and that is life threatening/saving information for me. Celiac Disease is a federally protected ADA disease. My right to that knowledge about Bart’s products trumps Bart’s right to advertise his products are “gluten free” in accordance with federal definitions.
I don’t like Bart coming on your website and harassing you for telling me about his product, or Amy’s soups or anyone else’s products for that matter. Your website is clearly marked for people like me and I greatly appreciate your efforts. I cannot adequately express in words how much emotional, mental and physical support this community has given to me during my fight against this disease.
I was eating Amy’s “Gluten Free from a wheat facility” products even for breakfast and I was not getting well and couldn’t figure out why. My Oct 2013 endoscopy was worse than my Dec 2012 endoscopy. Are you kidding me?!?? I loved Amy’s but I returned 10 cans of Amy’s soup solely because I read your post regarding Amy’s. My March 2014 CT scans were almost completely clear with no cancer since 2010!!! That’s great news – solely from being completely, really and truly, as close to Zero ppm gluten free as I can humanly be.
Bart should be very careful about making inflammatory statements and/or threats on this website. Gluten Dude, you and I have never met, but you won’t find a more loyal friend and I will protect my own interests. I have a legal right to know whether Bart’s products contain 20 ppm or even 5.6 ppm of gluten and/or are manufactured in a wheat facility. Bart should be very careful that he does not interfere with my legal rights – including my right to know this information. I’ll be happy to give Bart the number to my law office and I’ll be happy to discuss his attempted interference with my legal rights with either Bart or his attorney. As you can imagine, my and my Mom’s medical expenses related to our cancer have been exorbitantly expensive. This website has directly contributed to the reduction of our medical expenses by providing very valuable information directly contributing to our cure by helping us to be 100% gluten free. It could be very expensive to interfere with my obtaining that knowledge.
The government and science may cannot design a piece of equipment that can detect 0ppm gluten but my body certainly can find 1ppm and I’ll never knowingly consume ANY (not even 5.6 ppm) gluten again as long as I live – which may be a lot longer now.
Thanks again Dude for your hard work and for selflessly helping people like me – I appreciate you more than you know! I’m sure I would like Bart also and his products if they wouldn’t kill me – just don’t mess with our Gluten Dude or his right to properly inform me regarding gluten containing products.
Bart – just to be clear – I don’t represent Gluten Dude, I don’t speak for Gluten Dude and I’ve never met him, but I greatly appreciate his very valuable free of charge information that has helped keep me and my Mom alive and restore us to good health. I’m sure Gluten Dude never intended you any harm and I don’t see how he has caused you any harm by telling me the truth. I will be happy to discuss my concerns regarding your statements today and how your statements involve me with either you or your attorney anytime this next week that is convenient for you if you desire to continue this discussion. Let me know by replying here and I’ll call your office at the time you request. If you don’t continue to allege Gluten Dude has made patently false and misleading statements and you don’t interfere with Gluten Dude’s right to inform me regarding gluten containing products then there is no need for us or your attorney to talk unless you just want to talk, which I am always glad to do.
A big hearty CONGRATULATIONS for your 400th blog post, which is well deserved for many reasons, not the least of which is your second quick note above. I don’t see how you continue to do all that you do. If baseball players (or any other sports figures for accomplishments for that matter) receive national attention for 500 home runs then you certainly deserve national attention for 400 blog posts that actually help people and continue to make significant differences in the quality of their daily lives! Again, HEARTFELT CONGRATULATIONS!!!
As to the post, my golf pro teacher once told me “Don’t worry about what other people think, only 5% want you to hit it in the lake on the right and the other 95% either couldn’t care less or they are too worried about hitting it in the lake themselves to even see what you do.”
In other words, our non-Dx celiac friend can tell people whatever protects her health especially since her Dr told her to try going without gluten and it worked.
Have a great day!
I am often stumped by this question because I guess I do not understand why anyone has to justify their choices to anyone else about the decisions they make regarding their health.
It’s no one’s business what you eat. (or wear or what color you paint your bathroom or how you vote or if you like puppies or not or, or , or ) We have become a society that hinges on if we are “liked” and this makes us unable to make a decision for ourselves and be comfortable about it.
One way to stop a nosey person’s interrogation (about anything personal) is to ask calmly in response “Why do you want to know?” That makes them think about how rude they are to even ask. 🙂
Why can’t you just say ” I have a gluten intolerance” and leave it at that? More importantly, what do you care what people think?
This is your life, your rules for healthy living. (Whatever you say, please don’t say “gluten allergy” because really, there’s no such thing.)
Hon, I am going to give it you straight now, and IMHO:
You obviously have some moral dilemma here if you feel bad about lying that you have celiac disease ( because technically, you do not have a diagnosis and you may not really have it at all)
or you would not be asking anyone to validate your “fibbing”.
Obviously, gluten gives you wonky bowels, but it does not mean that you have celiac disease.
If you want to hear people with celiac disease say “sure, go ahead and say it”, it seems you are still relying on others to validate your GF life and your choices.
I think you should be okay with YOUR decision to be GF because it keeps you feeling well. You should be comfortable with that, no matter what anyone else says–pro or con about lying –because you know it’s what’s best for you.
Continued good health to you!
I can relate to what Jane is saying. For me, the insecurity comes from 2 common responses that I get. One is “You have been complaining about health problems for years. You try some new diet, food avoidance, etc and think it’s the solution but it never is. What makes this any different? You are just a hypochondriac.” The other, from one of my business partners, is “Yeah, I thought I had celiac too but it just turned out I had a Vitamin D deficiency. It’s probably all you have too.” Couple that with the many people that equate GF with Atkins, Paleo, etc and it’s hard to be taken seriously. But I am slowly coming around to thinking that I really don’t give a hoot what anyone else thinks. I will just quietly do what I need to do and get better.
Just a quick comment: a friend’s kid is anaphylactic to gluten. I’m sure it’s very rare!
We tell people that our boys have celiac–it’s in the family anyway, and it’s easier. People don’t understand gluten intolerance. I mean, most people with lactose intolerance ignore it. We are treating this as celiac, and want restaurants and friends to take it seriously. Even the kids’ GI doc said that the difference between celiac and NGCI is that you can “cheat” when it’s not celiac. We don’t look at it that way, and treat it the same. Intolerance suggests a mild issue that allows friends to say, “oh, the barbecue sauce may have a little wheat in it–but, a little gluten should be ok, right?” People just don’t get it. Anyway, knowing the kid whom we know has an allergy, we are careful not to say that because it is a huge difference. This is easy in comparison. So, when people say, “like celiac?” We say, “yes”!
One thing: the family members with the definitive diagnosis don’t seem to understand why we’d willingly give it up–we are dilettantes, health nuts, jumping on the bandwagon, etc. They feel that they have to be gluten-free, but we don’t really have to make that choice. For us, though, it’s the right choice based upon the elimination of symptoms. If the doctor doesn’t want to say celiac due to the testing being normal, that’s fine with us.
Wheat allergy exists, of course, yes,
But, I was talking about the phrase “gluten allergy” as a catch all phrase for celiac or NCGI. It’s simply not true.
I know what you mean. Servers in restaurants say gluten “allergy” because they don’t get it.
(Btw, this kid is actually allergic to gluten, not just wheat! Even more rare, I think!)
I use “food allergy” and say “I’m allergic to gluten” in restaurants because I want them to understand that I cannot have even a little bit of gluten. I don’t want to rely upon someone understanding what Celiac is or hope they understand that what I have is every bit as big a deal as an allergy even if I won’t have an immediate life-threatening situation.
Allergy is a serious word, and I need my situation to be taken seriously by anyone who prepares food for me.
You and I both know that I will have an autoimmune response to gluten, and it will suck! I want servers in restaurants to understand in the simplest terms. Sure, I guess we should be educating people, but my more pressing concern is the food being put in front of me.
No offense to anyone who does it differently. That’s just how I do it. 🙂
I’ve used the word ‘allergy’ to help explain away some foods I need to stay away from for my medical reasons. I don’t have any issues with gluten (and honestly not really sure how I ended up on this site, but I’m enjoying the learning experience). Saying ‘allergy’ just makes more sense to people. I need to stay away from caffeine and cigarette smoke (that’s a fun one to try to get people to believe, allergic to cigarette smoke!) but it’s still better than nothing. Smokers become automatically more considerate when you tell them their smoke is causing you a medical issue.
While I’m not by any means an authority on what is right or wrong to say about it, from a ‘normal’ person’s point of view, yes. Say whatever you need to say to keep your body’s normal intact. You know what works and what triggers your issues, so stand your ground. I’ve taken some flack for ‘over-using’ the word allergy with a callous ex, but there are all different levels of allergies, ranging from very minor and often ignorable (I’m allergic to celery!) to the scary kinds nuts can induce. So, say what you need and let their imaginations fill in the blanks.
Wise words beyond your years (obviously since GD posted that photo of you in your bikini in Orlando)!!
Since you have so much experience advocating and with this disease, do you think NCGI will eventually rise to the same important “disease” status as CD? It seems to me that it should because of all of the other horrible symptoms associated therewith even if it doesn’t destroy your villi.
I agree with your advice to “Jane” but at least “NCGI Disease” would eliminate the necessity for her moral dilemma – could this be the next necessary crusade on the gluten advocacy horizon?
I spent 2 hrs with a client yesterday who is enduring the entire Dx process. His GI Dr postponed his endoscopy for an entire month. He has already missed a prior entire month of work because of his symptoms and was getting much worse trying to continue eating gluten to get to the endoscopy. So I set him up with my dermatologist for a DH biopsy, which results he received yesterday and were inconclusive. Right after his DH biopsy, he along with his caring wife decided to go gluten free after considering my 17 month long odyssey. He has been GF for 5 days and is experiencing immediate and conclusive GF results. Our wonderful Dermatologist agreed with me and encouraged him that it was OK to keep on GF since it is working regardless of the villi endoscopy results a month from now. He will still see the GI next month just in case anything else is wrong. So far they have also done blood work of all types, prescription meds, sleep apnea tests, stomach filling & emptying, gall bladder surgery, etc, etc, ad nauseum (double entendre intended) and nothing has equaled the immediate results of being 5 days GF.
He may be a “NCGI Disease” candidate after being gluten free for a month by the time of his endoscopy; however, he may not have lived to his endoscopy if he had kept on eating gluten for another month!
PS I won’t pry but I do hope you love puppies. I will still admire you even if you don’t love puppies and even if you are the other beautiful woman in the bikini picture. The non bikinied woman could be the twin sister of a dear friend of ours in Tennessee.
(1) I was not the bikined woman–that’s Jules Shepard
(2) I have never been to Tennessee
(2) of course I love puppies–what monster doesn’t love puppies? lol
(3) I think NCGS is very serious and should be treated with a strict gluten free diet… for life.It is not an autoimmune response like in celiac. Research suggests that non-celiac gluten sensitivity is an innate immune response, as opposed to an adaptive immune response (such as autoimmune) or allergic reaction.
I just read an interesting chapter about this in Dr. Fasano’s new book, Gluten Freedom. I highly recommend it, BTW
(4) Most people who wonder if they have celiac but are not sure give up gluten and see a quicker recovery–as in days. I have never met a celiac who recovers that quickly. And I have talked with dozens and dozens of people in the last 3.5 years about this topic.
The gut damage and blunted intestinal villi take some time to resolve and grow back. Most celiacs I know take 6 months- 2 years to see real symptom resolution. Some never fully recover at all. Some of us have lasting complications. The intestinal damage is the significant difference, HOWEVER, gluten ataxia is another gluten-related beast that is also on the spectrum of gluten-related disorders.
(5) Dr. Fasano, et al are working on finding a way to accurately diagnose non-celiac gluten sensitivity so people can have a DX.
(6) my 87- year- old mom is NCGS. She was unwilling to do the endo, stating “What’s the difference–the treatment is the same”.
Her doc gave her his blessing, (she would have done it anyway) based on my DX and her lifelong symptoms. She feels great. And honestly, she doesn’t take any guff from anyone about this. She tells people “I don’t do gluten! got it?” (I love to watch her in action)
again, everything I say is IMHO.
Thanks for the well reasoned response – I’ll make sure my client and his wife see your info since they are now GD/IH fans and readers.
Glad you love puppies – I figured you did.
I was just reading back through your info to make sure my client and his wife read everything. My client is still one sick puppy, but being GF for 5 days is producing a noticeable difference for him. He worked around, operates and repairs very dangerous heavy equipment. Obviously this has been traumatic for him. He left work temporarily to avoid hurting someone else as much as himself.
I wanted to thank you for the gluten ataxia info. I’ve never researched this aspect. I just read a seven page article and it explains some of my and my client’s worst symptoms. I’ve lost count of the number of cups of coffee and glasses of tea I knocked over and dishes I’ve broken. I thought it was just my worsening 53 yr old vision. I’ve run into doors, almost fallen down our flight of 19 steps, and on and on. Thankfully havent needed a wheelchair. But one of the most telling, as a longtime pretty good golfer, was not being able to execute my golf swing without almost falling down last year. I stopped playing altogether and am now just waiting to get stronger. I was pretty weak but now I know it was more than just weak muscles. My brain fog has been one of the last symptoms to substantially clear up although I am strictly GF. That’s one reason I’ve enjoyed writing in these posts just to get used to writing and thinking again. I can’t go for 15 hrs like I used to but I am getting my endurance back.
Thanks again for your help – much to learn still but getting better most every day!
Read the Pub med articles by Marios Hadjivassiliou, MD, a neurologist at Royal Hallamshire Hospital in Sheffield, England.
He is “the man” for articles on gluten ataxia and brain-related disorders from gluten.
When I was researching all my neuro symptoms, his articles were part of what convinced me that gluten was fueling my many problems.
Thanks so much Mrs IH
Will do tonight!
You can call me IH or Irish… Mrs sounds so formal lol
Go Dude- 400!! WooHoo!!
I completely support the writer’s use of celiac. Hey, you’re well because of going gf. A lot of time being very sick while wading
through the system and expending much needed energy trying to
get a diagnosis was avoided. At the end of the day the treatment is the same. If you’ve read many postings on this site alone, you’ll read about how too many of us were undiagnosed for years.
Take care of yourself, okay.
I am honestly in exactly the same position. My partner made the decision for me months ago when we realised that eating at my parents’ place would only be safe for me if I told them I had been diagnosed. I ran my idea by my brother, who is a medic, and he agreed with me: the health system in the UK is not as crappy as in America, but they will not allow me an endoscopic procedure because my bloods came back negative. All I know is that for the first time in my life, I feel alive. To me, that’s what matters.
I’m very happy to hear your answer that it’s ok. Because I am in the same boat. I wish I did have an official diagnosis, but I’m not willing to confuse gluten ever again to be able to get the tests. I’m feeling better than ever, and I tell all new people (a lot know the struggle I had) that I have celiac.
Seriously, I don’t think you understand how happy you made me feel. I have almost an identical story to Jane. My dad has celiac and after going dairy free and still having stomach issues, I got a blood test. It came back negative but my dad and doctor urged me to try a GF diet since I couldn’t afford the other tests. 6 weeks in I felt AMAZING! My doctor agreed that I should be gluten free for life. But I never knew what to call myself, celiac….gluten intolerant? I felt like a lost puppy or a liar, kind of lost in this awesome community because I didn’t know how to label myself. So, along with Jane, I’ll call myself a celiac from here on out without fear of being called a liar. Thanks Gluten Dude, Jane and the awesome GF and Celiac community.
I hear you, Irish Heart, but I know for me it’s about more than having people like me or accept me — it’s about them taking me seriously and not trying to give me things that are unsafe for me to eat. When I would tell people I had NCGI they would always assume that I could have a little gluten, or that I could cheat, and it was difficult getting waiters to be careful with crumbs, etc. People still ask me directly if I have been diagnosed with blood tests and I tell them that my doctor has advised me to not do a gluten challenge (which is true). So those highly confrontational/nosy people know that I have not been officially dx’d and I don’t care what they think. But for others, if I can stay healthy by telling them I have celiac, I will. It’s a shame people are so disrespectful but they are. I have too many friends who are gf to lose weight or are trying it every so often (without being at all careful) to see if they feel better, but I can’t eat the way they eat and claiming a dx helps.
I don’ t know how to tell you this, kiddo, but the truth is,
I can say I have celiac to a waiter and still get the eye rolls and the disrespect, too.
We’ve all been glutened and we all have our share of disbelievers.
Not sure why anyone thinks the diagnosis automatically commands a different level of respect.
Just read all the blog posts from people struggling to have their celiac child’s needs taken seriously in school. Celiacs report their own family members saying “oh that’s not a real thing”. Grandmothers who try to get them to eat just a little by scraping off the gravy, etc. It’s no different for a celiac.
My POINT to the writer was it does not matter what you call yourself,
it’s how you deal with the people who question you!
Don’t take any shyte from anyone about this….. Period.
I totally agree with you, IH. A person doesn’t get any more respect with “Celiac” and personally, I’m past caring what others think but it’s a concise response for those who are “unofficially” diagnosed.
I am rarely asked as I believe that most people don’t notice or don’t care. I also don’t explain. I will keep your response in mind for future use – “Why do you want to know?” It’s MUCH better than mine – “If I eat that I get scabs on face and poop blood.” It’s quite a conversation killer but I don’t get asked twice 🙂
That’s very true, and I still have people who don’t take me seriously (“you mean you’re vegan?”). But I only eat out restaurants that have explicit statements about accomodations for celiacs (so I rarely eat out) and in those cases stating that I have celiac allows me to receive the consideration they give celiac patrons, which is important to me as I am very sensitive to cross contamination. I am not saying that celiacs don’t face doubt and disrespect, but my own life has become much better and it’s been easier to stay healthy now that I am saying I have celiac and asking people to treat me as such.
I’ve found there are all sorts of things that make social encounters simpler — when I’m walking witha cane, saying that I have autoimmune disease related arthritis is simpler than explaining that I haven’t been dx’d but my rheumatologist thinks it is celiac related. If I turn down food at a networking event, saying that I have a severe autoimmune sensitivity leads to fewer questions (there are still some of course) and intrusive demands that I relate my entire medical history. There’s still a lot of disrespect but it is noticeably less in my experience.
I wish I was tough enough to whip people into shape. But if I don’t say I have celiac, I end up having to go into a whole narrative recounting all of my experiences over the last 11 years, because the only truth I have is that one doctor told me I probably have celiac and to avoid gluten and not get dx’d and the others all told me to see a psychiatrist. I don’t feel that strangers have the right to know my whole experience, and I struggle with the reactions when I tell them the truth and the amount of time I end up having to spend arguing for my right to follow my rheumatologist’s recommendations.
” I don’t feel that strangers have the right to know my whole experience, ”
That’s just my whole point.
Strangers don’t have the right to question you nor should you feel the need to explain ANYTHING abut your life.
I’ll tell you all one major advantage about getting older or “battle worn”.
You just don’t give a rat’s butt what other people think about you.
You just live your life on your terms. It’s really quite liberating to be this way. You all should give it a whirl! 🙂
I hear you and agree — my only point is that it isn’t entirely about caring what other people think. It’s sometimes the difference between having people take your health seriously and having people be careless because they don’t think it matters. And of course, that doesn’t work 100% — but it is infinitely better at times for me to say “celiac” rather than the truth: “I don’t know if I have celiac or NCGI but I have some issue with gluten.” I’ve been to restaurants that will only accomodate celiacs and refuse to provide gf food unless you claim celiac. That’s wrong, but when it’s the only place available and I got hungrier than I expected over a weekend away and didn’t have enough food in my suitcase…I’m going to say I have celiac. When people refuse to believe that I am sensitive to gf oats unless I say I have celiac, I’m going to say it to make sure there aren’t oats in my food.
And it isn’t perfect because people also disbelieve celiac. But after years of saying “I don’t have a diagnosis but I have issues with gluten that resemble celiac or may be NCGI” I have found that I’m marginally safer when I say “I have CD.”
If you have a suggestion for what I could say, I’d love to hear it! I don’t like this situation, but nothing else that I’ve tried has gotten me so quickly to being taken a tiny bit more seriously.
As far as responses go, I’m stealing Sue in Alberta’s “I get scabs on my face and poop blood” as my go-to line, now. 🙂
that is a pretty effective line……
Although, I may add to that, “and, I fall over.”
…..and my hair falls out ….erg
Kathy and IH, where else would THIS be funny?! But yet it is:)
A good sense of humor is **very** healthy.
“I’ve been to restaurants that will only accomodate celiacs and refuse to provide gf food unless you claim celiac.”
What the hell kind of place is that? seriously. What restaurant would be this rigid? Gluten free is gluten free.
So very true. Always value your view point IH. Xoxox
This is kind of my situation – I did have a positive blood test & genetic test, but i never got the endoscopy because I was advised to try the diet right away and see what happened. Of course, I felt amazingly better within a week or two, and I wasn’t willing to go back on gluten for three months just to get the endoscopy done, which is what the specialist I was referred to told me I would have to do. Plus, celiac disease runs in my family, and I’ve got several relatives with an ‘official’ diagnosis. I don’t think there’s any problem whatsoever with ‘lying’ about your diagnosis as long as you stick strictly to gluten free. It’s really no one’s business why you’re GF anyway.
Frankly until the day humans greet each other like dogs with a nose to the butt, I will welcome strangers to keep their noses out of what goes on with my insides!!
If a GF diet helps you, GREAT!
The only time I personally care about another person saying they have intolerance or celiac is when they are the idiot ordering fries from the contaminated frier & croutons with their cesars salad. In that case reserve the right to have a loud discussion outside. 🙂
This disease takes too many things already, I don’t have time or patience to get worked up over the status of someone elses insides.
Thanks for my belly laugh today! As a lifelong companion of “fur people”, your statement immediately brings to mind many vivid memories.
During my sickest days, one of my favorite all time memories of my old Black Lab’s face was when I was packaging one of many “specimens” for tests. My fur person looked at me like “Dad, I don’t believe even I would have done that!”
Yeah my old lab looked at me like “I hope you don’t expect me to carry that”. Best thing about a dog is they don’t mind taking the blame for the “odd smells” that accompany a contamination.
Well, I have NCGS, and have found that it just becomes a real pain explaining this to all and sundry, and with all the fad dieters out there you just do not get taken seriously a lot of the time, so in restaurants and things like that I do say that I am celiac. Short, sweet and to the point, saves a lot of hassle in explaining what the condition is, etc. etc. and I do not feel bad about this at all. I have to live like a celiac due to this so what is the difference what you tell people in a public place? It gets you what you need to stay healthy and for myself if I do not live like a celiac I get extremely ill.
My doctor told me not to bother getting an “official” diagnosis, since the change in my health since going GF is so drastic. To get properly tested I would need to eat enough gluten to risk vomiting in my sleep again, and that’s really not how I want to leave this world.
Yes, I have a problem with those who SELF DIAGNOSE as a celiac, without going through the rigors of testing. There IS a difference between and intolerance and celiac – and it’s important to know the difference so you can acquire proper FOLLOW UP CARE. Now, if you go through as much testing as you can, and you can’t afford to continue, have mismatched results, can’t handle the medical issues if you continue on a containing diet, etc. – and you PROMISE to act like a celiac in ALL ways – meaning not ever cheating, getting proper follow up care, then call yourself a celiac. JUST TAKE CARE OF YOURSELF PLEASE!
I agree you, Erika. Self-diagnosis is risky business and there is a reason for all the testing. You could be missing something important.
Follow up care is essential, too.
There are so many things that MIMIC celiac. It’s really important
to understand what the hell is going on inside you..
I completely agree! Self-diagnosis isn’t safe or healthy – but it sounds like Jane has gone through everything she can and is thriving on a GF diet. I tend to agree with those who say that they aren’t taken anymore seriously when mentioning ‘celiac disease’ than ‘intolerance’ or ‘allergy’. I’m new to this (less than two months), and have been really lucky at the few restaurants I’ve tried, but most servers just stare at me, mouth agape, and then say, “Oh, like an allergy?” No, not exactly.
I completely agree. There is a difference between intolerance and Coeliac Disease. There’re is nothing wrong with saying you’re gluten free or intolerant, just don’t claim to have CD if you’re not formerly diagnosed. There’s a lot of people out there in general that now stereotype us who have been formerly diagnosed and claim its a ‘fad,’ due to self-diagnoses and false statements. I’m now intolerant to dairy and soy, but don’t say I’m allergic, just intolerant.
Don’t be ashamed to be gluten free or intolerant, just don’t claim you have CD if not formerly diagnosed. It’s like telling people you have diabetes or Asthma when you haven’t.
The more people are GF, the better for Coeliac’s and those with intolerances 🙂
The way my Gastro put it to me is that humans have introduced gluten into our diet when we were originally meat, veg and fruit people. It’s something our bodies have trouble digesting in general.
I have a lot of people tell me they have CD. IBS, gastric reflux etc are other known conditions aggravated by wheat based products, acidic foods and dairy. There’s no shame in that or going GF…
Many have to self diagnose due to crappy doctors and the unwillingness to be sick any longer: missing work, missing out on life, for me being a mother and furthermore developing more auto immune issues. It was a definite that I could no longer eat it to be tested. Thanks to ignorant doctors and trying to figure it out going weekly to various doctors for 6 months makes me angry when someone tells me that I am some how different than those who have it on paper.
You know I care for all of you with it on paper. I just want you all to see our points too. I respect you all that stuck through it to get it on paper. Those of us who tried to stick through the hell .. Deserve the same respect. I just couldn’t make it past 6 months. I had a job, kids, bills to pay and my Life to Live. I was not doing it any more. Choosing to have no official diagnosis was a necessity for me.
I want you to know—I want all of you to know–that I am no
“celiac elitist”. I know there are celiacs out there who behave this way. While they are clinically different disorders, gluten is the common enemy.
When I say there are benefits to being diagnosed, I mean it.
Follow up testing is important and using the “celiac disease” diagnostic code will help people afford those tests.
If someone continues to have symptoms, tests like small bowel follow through will help determine what else may be wrong.
But I would never recommend anyone do a gluten challenge if they will suffer. That’s just crazy. I would never make it past 2 days myself before becoming violently ill.
They are working on a 3-day challenge test.
This will help the vast majority of people who desire a proper diagnosis.
I have great respect for anyone who makes changes in their diet
without apologies or justification for health reasons.
My dear friend Suze went grain, sugar and dairy free nearly 30 years ago to try and stop the advancing symptoms of MS. Everyone who knew her thought she was nuts “giving up all that food”. BUT I DIDN’T. 🙂 She brought her own food everywhere. She was paleo before it was even a “thing”. (Is she a celiac? we both think perhaps so but she does not care about why she does what she does to stay in good health. On top of it all, she went vegan a few years ago. ) . Those people who made fun of her “crazy diet” are in awe of her now.
This remarkable woman ran the Boston Marathon and finished!! Still not in the wheelchair they predicted she would need. I have never been more proud of her.
We all do what we have to do to stay healthy.
No one should have to justify why they are on a GF diet or a DF diet or any diet. Someone’s commitment to good health should be honored. Most importantly, never ,ever think that I am not behind you 100% because I am.
IH ~ I absolutely, with 100% certainty know, and would never call you an elitist celiac. I respect everything you say and know how you feel about those of us without it in writing. Hope I did not imply that. You are Awesome! Still kicking myself about last month! 🙂
I know, hon….I just wanted to let you and everyone else know how I feel. I am always upset by this particular conversation for some reason. 🙁
Maybe because my own diagnosis was not easy to get and so hard-won.
I feel for everyone who has been through this battle.
Next GF conference, babes–we’re both there! 😉 xxoo
Do you know there is one that many of us are going to in Orlando in November? I’m going to try and make it. Will send you details.
please! keep me posted…. still have my email?
I also don’t have an official diagnosis. All I know is that I feel better off gluten. Gluten intolerance, unfortunately, just doesn’t sound as serious as “Something Disease”. Everyone knows about those Lactaids that you can take for lactose intolerance and be able to eat cheese anyway. I would imagine that most people think there’s a Glutenaid and that it’s just not that serious. It’s only an intolerance anyway, it’s not like it’s gonna kill us right?
Unfortunately, if I eat gluten, I’m bed-ridden for a week. I don’t have the GI symptoms but oh boy, do I get tired and achy. So if I’m unsure how someone will react to my intolerance, I just flat-out say I have Celiac. There’s a good chance I have it anyway. So that goes for restaurants, acquaintances (those people on the literacy committee that host a dinner meeting a couple of times a year), people trying to sell me bake sale items and anyone who doesn’t have time to listen to me explain my situation. My family and friends know the truth, which is that I may or may not have Celiac but that I need to avoid gluten. Fortunately, they understand and do everything they can to support me. If I ran into an unsupportive family member, I would probably pull out the Celiac card. I mean, if you want the truth you need to do your part, which is to respect my health whether I have an official disease or not.
The conclusion of this is: don’t be afraid to use that term. Especially in public or at restaurants, where an intolerance might just get shrugged off. There is no Glutenaid.
A fellow uncertain Celiac.
I have the worst time with relatives. These are people who have known me for years but I haven’t really seen even on a weekly basis. When I dug out my gf matzah for a seder, I got the heavy sigh and eye roll with a “just eat it (gluten) already!) This was a person with MS who has been advised to eat a special diet…including gf! I told her I’ve been gf for 3 years and feel better than I ever did and that the consequences aren’t worth it. I offered to share the list of those over the meal and she declined. Bummer, because it would have made my point! The fact that 2 of my grandchildren are celiacs just got another eye roll. I am to the point of saying I have doctor’s orders (lying) to shut family like this up! I never will have doctor’s orders because I am not willing to go back on gluten to be tested.
I love the dialoge in ths community. First of all, I have to say everyone is right… One shouldn’t care what other people think, but we also have to protect ourselves or our children/loved ones when out in public.
My husband I have used all the different terms. When describing it to our 2 yr-old celiac child, we NEVER used the term “Celiac DISEASE”, because we didn’t want her to worry about diseases, or thinking that she got germs, or even worry if she was going to die. She was too young to understand the term disease, so we just simply stated that she couldn’t eat gluten. When we rarely go out to eat, we often say she has a wheat allergy – because trust us, food serves don’t understand, but they know about food allergies and the risks associated with anaphylaxis. We are very careful about what we order so that there is no issue with hidden gluten items, even if we are only stating it is a wheat allergy. Of course that is for places that do not have dedicated GF menus. When we go to a place that does have a GF menu, we are extremely careful about what we order and the instructions of how cross-contamination will affect our child.
So yes, to protect her, we lie all the time – whatever works best to keep her safe. She still thinks of it as an allergy, because that is easier to explain to her friends (she is now 6). When she is old enough to understand more about her body and autoimmune diseases, then we have a discussion about celiac disease and NCGS. I see no problem with other people stating that they are celiac when they have not gotten an official diagnosis (for whatever reason) as long as they take the recommendation from Erica Dermer: DO NOT CHEAT, and be as vigilent about ordering your food as if you were diagnosed. No one needs to know what is in your medical chart, but make sure you are getting proper medical care and follow-up to make sure you remain healthy after your GF diet.
I am *self diagnosed* but thats because I am firmly convinced. Ive had major symptoms my whole life, since I was born! The common ones that a doc should have noticed. But instead I was give soy formula, and finally thrived and grew.
My symptoms as a kid till I was 19 (when I learned of celiac and GF) have were horrible. Doctors gave me every diagnosis and different treatments. But I gave up. My mom goes through alot of my symptoms. I ended up just thinking it was normal. (Because normal can be not pooping for over a week…) In fact alot of my family members have my symptoms…
The only reason I am healthy now, was because after I got married last year my husband explained that everything he saw me do, wasn’t normal. Having a two hour nap every day with a painful back and joints hurting to move sometimes is not fun for me, or for a new husband…
After we figured it out, I went full on serious. Did tons of research, made mistakes and learned. I felt better. We decided not to test because of the price, and because I refused to eat bread every day just for a confirmation of what I know. I feel to good to go back.
But heres the kicker!
After a few months of studying and going GF, I went to my doctor for a checkup (the gp I’ve had since a child). Told her how everything has been, how Ive been feeling, and explained to her how all my symptoms have cleared, and that I suspected it was celiac.
She replied, “you are probably right, especially with your past. Lets put that on your file.” And she told me that a lot of her patients might be too because their symptoms are so sparatic and simular….
So now I have it on my file. Not sure If I should be happy or mad that she didn’t catch it before…
But one thing. If you are going to claim it, then be 100% committed and serious about it. They might question you at first, but be firm. Eventually the people that really care will come out and see the positive changes and support you.
This dialogue will be outdated once the medical community learns that NCGS creates the same miserable quality of life and many of the same health risks as Celiac. Whereas the small intestinal villi may not be destroyed (which I question since constant inflammation seems would eventually take a toll), the other part of the package including loss of nutrition, inflamed joints, migraines, osteoporosis, loss of days at work, etc. etc. are indeed serious consequences.
The hope is twofold: 1) a definitive test will be developed for NCGS. 2) that this diagnosis will be given the same respect by medical professionals and the general public as those diagnosed with Celiac.
In the meantime, if saying you are Celiac means being taken seriously, then go for it. I personally encountered a restaurant with a gluten-free menu in Ann Arbor. I noticed that one set of pizzas touted a gluten-free crust, but wasn’t included in the gluten-free section of the menu. I questioned it and was asked if I was Celiac. I said “yes” and the response to my answer was “Oh..then don’t order any of the ones on the top of the menu. They are baked with the regular ones and aren’t kept separate. The others are just for people who don’t want gluten.” If I had not said I was Celiac, then she probably would have said the other pizza was fine. While we realize the risks and are experts at quizzing staff, unfortunately unless you say the magic word “Celiac” even restaurants that make sure they are safe for Celiacs don’t necessarily take your needs seriously if you say you aren’t.
As others have said though, don’t cheat. Gluten is either a non-issue or it is a health risk. Treat it as such.
Speaking from my personal experience with celiac patients and friends and gluten intolerant patients and friends, I find that MOST celiacs are very carefull to stay 100% GF because of the long term damage, and MOST gluten intolerant people are not that 100% careful. The gluten intolerant people with severe symptoms who do really try to stay 100% GF quite possibly have celiac and if they need to say they are celiac to stay safe they should. But I don’t really think it helps that much. I don’t like the term gluten allergy, but I understand why they do it because it seems to be all a restaurant can understand. I agree with Celiac and the Beast and Irish Heart on their comments. I just hope and pray we can PLEASE have some better, easier, cheaper testing so everyone has access. It kills me to see someone suffering for months waiting for their EGD.
When I was diagnosed, I was in an ER. After seeing many doctors and not one taking a test for Celiac, but without even examining me, told me I had IBS. My husband finally drove me 3 hours from home to a university hospital. They took the blood test, it was borderline. The doctor said he was diagnosing it as Celiac. He could do the biopsy, but I would have to eat “normally” until it could be scheduled. I was too sick and malnourished to take that chance. So I started eating gluten free right away. The doctor diagnosed it as Celiac. Technically, it was not confirmed with a test. I still tell people it is Celiac and it is in my records as such. I am 100% Gluten Free. I can’t even try and cheat, I am sick within 15-20 mins. I wouldn’t even question his diagnosis.
I think you also have license to say you’re gluten-intolerant.
First, a bit of family history, if you’ll bear with me: I’m a biopsy diagnosed celiac, from a family of people who are gluten-intolerant. I’ve been told I may have both gluten-intolerance and celiac.
Four relatives on my father’s side are pretty classically gluten-intolerant. One relative on my mother’s side, on the other hand, has full blown celiac, with a lot of the bad neurological side effects, because her celiac was not diagnosed for thirty years.
I have the fast-reaction-to-gluten associated with gluten-intolerance, none of the genes for celiac, and a positive intestinal biopsy for celiac (Marsh Level 1), which I finally got ten years into being gluten-free. I’ve also had some of the neurological symptoms associated with celiac, so I’m pretty sure that’s what I have.
Because I get sick from gluten so fast (which is not as common with celiac), I’ve had people suggest that, “maybe I’m only gluten-intolerant.” Neither diagnosis gets enough credit for how miserable it can make you.
If people give me crap about it, I say, “O.K., I’m a gluten-intolerant celiac.” (Because it’s possible I actually am, and it doesn’t really matter.)
I know I’m not liked by the gluten free community for my opinion on this subject. This saddens me very much 🙁
I believe in my heart it is wrong to lie about your diagnosis. It hurts the truly diagnosed because the medical community doesn’t believe anyone anymore. That said, I have no problem with someone who is honest and says they feel like hell whe they eat gluten but have no diagnosis. The only thing that bothers me is when they ‘play celiac’ sometimes and later boast they ate gluten for the day because they just couldn’t resist. Did they get sick? No! It sure as hell makes me sick if I get glutened
I lost my mom to complications from type 1 diabetes 30 years ago. My much loved big brother has just been diagnosed with non hodgkin
lymphomia. I begged him to ask for a celiac panel. years ago. His doctor refused to run the test. Said he didn’t see that my brother needed the test. Hello! I’m his sister…I do have a biopsy diagnosis. That alone qualifies him for a simple blood test! Maybe he wouldn’t have cancer now!
If you are faithfully gluten free without a diagnosis I support you fully! Just don’t lie. Just say it makes me sick. Maybe you have celiac and maybe you are gluten sensitive.It doesn’t matter to me if you are faithful to the diet and honest. I have your back and will support you all the way! I’m not the hateful person some people want to think I am 🙁 My mom raised me to always be honest and tell the truth. On a bright note, my son’s new young gastroenterologist supports the diagnosis of non celiac gluten sensitivity 🙂 If he can…so can I
Much love to all,
Galwayfan aka Neesee
As much as we all (doesn’t matter about ultimate Dx) have suffered from gluten, any quality members of the gluten free community “like” you regardless of your opinion. GDude has created a wonderful environment in which we can express our true feelings without fear of retribution.
I understand your desire to tell the truth at all costs. I don’t believe my lovely wife can tell a lie – she is honest and sweet to the core.
However, there are many who may or may not be “celiac diagnosed” solely as the result of the quality of the test results. As you and others this morning have stated, “play Celiacs” are the problem. The problem is not people who genuinely have a problem with gluten, regardless of a formal diagnosis yet, and need to protect their health for whatever reason. I custom tailor my message depending on the listener. Lately, I tell restaurant people – NO gluten please – it is a cancer thing – it almost killed me last year and I don’t want it to kill me this year. It works with most caring people and I frequent their restaurants. If I’m suspicious it didn’t work, I don’t eat and I don’t go back without a real good reason. I’m telling the truth and I’m still not always sure I’m safe. I’m very empathetic to any one like your dear brother who may should have been gluten free and isn’t “diagnosed” because of lack of quality medical care. Only “play Celiac’s” hurt us not real people who simply don’t know yet for whatever reason that they need to be free of gluten at all costs and they should tailor their message to a specific listener to protect their own health.
As to your dear brother, he may want to consider not eating gluten anymore even now. If you read my prior posts since February, it may encourage him to stop gluten now. We currently believe from all current indications that my Mom is about to be healed from her third bout since 1997 of Stage 4, B cell, Mantle cell, Non Hodgkins Lymphoma mostly by not eating gluten after the chemo stopped working in November. We only wish we had known to stop gluten sooner than 2013. We are obviously thankful for all the doctors and medical community have done with chemo and caring treatment since 1997. However, being gluten free is picking up Mom’s healing where chemo treatments could not finish healing. Mom had 89% cancer cells in her bone marrow biopsy this time last year along with many Stage 4 tumors. We will have medical proof that being gluten free is an important treatment on May 15 after next CT scan on May 12. We love Mom’s oncologist but she didn’t believe being gluten free mattered last year. Her opinion is changing and may be changed for good in May! Thankfully Mom also listened to her son last year and not just her doctor.
So for your brother’s sake, it may very well help and probably can’t hurt for him to stop eating gluten even now. My Mom is living proof at the moment because she is doing so much better. Mom doesn’t take ANY medication except NOT eating gluten!
I know what you mean by people who “play Celiac” but turn around and eat a croissant. However, considering Celial test is not all that accurate (though getting better), and considering the cost of it and the amount of doctors that don’t bother/understand, it is truly hard to get a diagnosis. I am living proof that 8 years of telling doctors there’s something wrong with me will still not have a single one of them try to look beyond a depression. They are quick to prescribe me a boatload of pills though…. but that’s another story.
Anyway, my point is that I honestly think that “lying” by saying you’re Celiac to a restaurant server doesn’t hurt the “truly diagnosed” if you live the 100% GF lifestyle as I do. If I were suddenly diagnosed as Celiac, nothing would change for me. I have already replaced my cookware, wooden spoons, toaster and I avoid the cross-contamination as much as I humanly can – and I’m in this for life. So there is no reason why it should be wrong in terms of ethics and consideration to Celiacs. I am not willing to eat gluten for an official diagnosis, it is only a piece of paper and the way I feel is much more of a proof to me than any piece of printed paper. However, I agree that people who don’t follow the GF lifestyle 100% should not lie about it because then, it could make everyone else lose credibility. I wanted to make that distinction. Of course, if you feel morally uneasy about lying even if you are truly 100% GF, by all means, don’t!
Just my opinion 🙂
My daughter was officially diagnosed Celiac almost two years ago. I had taken her to a pediatric endocrinologist because of short stature. I was expecting growth hormone shots (which we did end up with a year later). The blood work they did came back normal except for Celiac, what should have been 100! It took a couple of months to get the blood work repeated and get set up with the pediatric gastroenterologist and get the endoscopy done. During that time I got tested and so did my husband. His was negative, mine was in the weak positive category. My daughter’s gastro thought my results were significant given my daughter’s history. I had already decided to go gf with her regardless. When I saw my gastro a year later we finally discussed the weak positive results and the fact that I had responded to the diet. I had the egd and he said he didn’t see celiac but many times there is a false negative. I knew it would not show up after being gf for a year anyway. HE told me to stay gf. So I have a couple of things I say, 1. I eat gluten free. 2. I eat gf because of medical reasons. 3. I am gf BECAUSE of Celiac Disease.
At a restaurant I usually just have to say that I eat gf and remind them to use precautions in the kitchen. We also stick with places that seem more sensitive to it. Recently I had two cataract surgeries and I decided to list gluten as an allergy and to keep it that way in my medical records, it seemed easier that way. BTW, I also know someone with an anaphylactic reaction to gluten.
Something happened to the results part of my comment. It should read- what should have been less than 10 was over 100!
I can relate to this as well. I had a wide array of symptoms all my life, but none of the “severe” stomach symptoms until more recently. It wasn’t until I started breaking bones at age 39 that I was referred to an endocrinologist. She ran a celiac panel which according to her and my primary were “definitively conclusive” for celiac. My primary ran genetic tests that were positive. My primary felt I didn’t need the endoscopy and didn’t refer me to a GI doctor. At the time I was so overwhelmed by everything I didn’t even really know that I should have pushed for it. They did send me to a dietician, which was a waste of time. I consider myself celiac and live a gluten free lifestyle (foods, topicals, etc). I am very careful about my foods and very rarely eat out. I have noticed in the two years since “diagnosis” that things I considered “normal” for me GI wise have somewhat resolved and if I do by chance get glutened I can tell almost right away (starts with the rumbling and then fatigue…). There is a small part of me that feels guilty for saying “I have celiac disease,” and now we’ll never really know because I’m not going to start consuming gluten again. Since my doctors told me that’s what it is right from the start, am I really “lying” when I say I’m Celiac?
Positive blood work plus genes? you have celiac, IMHO
Hi Danica –
NO, you are not lying –
My celiac panel was off the charts and I also have the positive gene. My internal doctor said you have celiac disease but still sent tme to liver disease / gi doctor. He is a top notch GI guy in Dallas and he said we are not going to put you through an endoscopy, you have CELIAC disease. 6 months later all my lab work(which was a hot mess with low levels of tons of things and except for liver enzymes which are slightly elevated – were back in line and for the first time in my life I was/and am not anemic. My energy continues to come back to me a little more each day, month and year. All sorts of things changed including my nails grow so long and thick that they are hard to manage and prior to diagnosis, they were paper shell thin. I have celiac disease and I don’t feel one bit guilty stating that without the “gold standard” endoscopy – 🙂
Big hugs to Irish Heart who told me the samething when I said, “but I don’t have the endoscopy…”
Here in Australia, they’ve developed a test for CD that will eliminate the need for an endoscope, which is great. It’s similar to the genetic test apparently. Hopefully it will be released soon (not just down under) and will be affordable. I wish it was developed before my formal diagnosis. I do think the genetic test is as good as the biopsy, which I had that formerly diagnosed my CD.
You would all probably be stunned to hear how I was diagnosed. I assure you, it was not the “proper gold standard way” and it was ass-backwards. My biopsy came much later because I was too sick for so long to be put under anesthesia. My GI doc was adamant about waiting.
Here’s the bottom line, people: Gluten makes you sick? don’t eat it!
Say what you want, just please! do not be a “dabbler” going off and on the diet when it suits you and claim “I have celiac” to justify what you are doing. Unless you adhere strictly to the GF diet and commit yourselves to being healthy and happy, you’re not a REAL GeeFreer and frankly, this is what makes people look at all of us–NCGSs and celiacs alike– as if we are being pains in the asses asking for a GF menu and some consideration when we dine out.
IMHO and cheers! 😉
I have auto immune issues that correlate with being gfree. I did not get a positive blood test .. And I was about 90% gfree when I had it done. I had an endoscopy done when I was trying for 100% gfree. I don’t think I was 100% as I was eating out a lot. Either way, the only positive I have is correlating auto immune issues and symptoms disappearing with no gluten. I am also at the point where I rarely eat out due to cross contamination issues. I would tell all of you that I do believe I have celiac disease, but since it is not in writing I have not been able to tell anyone that I have celiac disease. I war with this constantly .. With my family, with my friends and when eating out. I want to say it, “I have celiac. I have all the symptoms you do from gluten. I have all the relief you do from being gluten free.” Yet, I have such a difficult time saying anything other than, “I am a probable celiac. I can no longer be tested. Due to my other auto immune issues I have to be gluten free and they correlate significantly with celiac.” I have days where I just tell my immediate family .. I am just going to start saying it, but then I don’t. I need that validation from the community that I am just as worthy to have that title. Why does the piece of paper from the doctor mean so much to us? It is really so stupid to me .. Especially since I work in the medical system. I should not be at war with myself anymore over this.
I want to shout to the world that “I don’t need a Test. I know I have Celiac Disease!”
And I will never undergo current testing .. To eat poison … For further damage …. To have it in writing. I should just be able to say it … Just as all of you that know, that need to be 100% gfree .. I have Celiac Disease.
You are AWESOME Mr. Dude! Thank you for all you do!
I think that those who act as if they have sole custody of a diaganosis label are way more annoying than anyone “lying” about their illness. Try not to be a star bellied sneetch:)
62 comments later, I thought I’d pipe in here too. Why should you have all the fun 🙂
I think almost all of us are saying the same thing: If you say you’re celiac, whether you are or you not, represent the community well. That means no cheating…period.
If you give it up 100% for health reasons, whether diagnosed or not, I don’t care what you call yourself. We’re all on the same team.
I am sorry, but I do NOT think it is appropriate to tell others you have a disease for which you have not been diagnosed by a physician. This applies for all diseases, not just Celiac Disease. One would not go around telling others they had Multiple Sclerosis, Cancer, or Diabetes just because they think they ave the symptoms (I would hope not at least), unless they actually had been diagnosed. I think the amount of self-diagnosing that happens with Celiac Disease is why so many in the public do not take it very seriously.
In a perfect world your demand for a diagnosis would be best; however, the amount of “failures to diagnose” and “misdiagnosis” that happens with Celiac Disease and gluten intolerance is also the very real other side of the coin as to why so many in the public do not take the absolute necessity of “being gluten free” very seriously.
Many people either die or suffer horribly and needlessly for years to decades from ingesting gluten solely because their doctors either failed to diagnose or misdiagnosed their conditions, which may not be all of the medical communities’ fault considering the evolving nature of the intolerance and disease symptoms and inadequecies of testing.
The current situation is too complex and convoluted, which involves much needless human suffering, to be able to draw your clear line of demarcation regarding diagnosis of the disease in the sand. Your demand for an accurate diagnosis should be the goal; however, we are not even close to the goal line yet.
I personally had so many different and seemingly unrelated symptoms, including cancer, totaling more than 13 symptoms by the time I was diagnosed that I don’t fault my doctors. Who could believe that me eating wheat was killing my Mom with lymphoma and me with skin and esophogeal cancer along with everything else including CD. Our only cure is not eating gluten and we are alive today because we stopped eating gluten. Some people may not even have visible symptoms and they still have CD. Now that is a complex disease! There simply is not a clear line of diagnosis for this disease to be drawn in the sand yet.
We must have compassion for those of us who the medical community either failed or cannot yet diagnose for various reasons. Again, the “play Celiacs” are the problem – not those of us whose only recourse is to self diagnose (some accurately and some not accurately). I suspect the ratio of accurate self diagnosis by people really suffering from CD rivals the number of accurate diagnosis by physicians. If you have CD, you are sick enough to know something is wrong with you regardless of whether a physician gives you an accurate diagnosis or not.
Hap, thank you for stating that so eloquently! The road to a diagnosis is far from clear cut.
I don’t think anyone needs a label or a diagnosis to eat the way that makes them feel their best. One does not need a celiac diagnosis to eat a GF diet. I am sorry if others have made you feel bad for wanting to eat that way. They should not do that. There are other medical diets, like the diabetic diet (I also have type 1 diabetes) and you don’t need a diagnosis of diabetes to eat that way if it improves your health, either. You shouldn’t feel like you have to justify the way you eat by labeling yourself with a diagnosis. Self-diagnosing any disease, Celiac disease or any other, is never a good idea.
I was not looking for a “label” and I don’t think Steve or some of the other commenters were either. “Jane’s” question was “…WHEN PEOPLE ASK why I have to eat gluten free I often respond by saying ‘I have celiac disease.’ Is this an okay response? I feel like I am misleading them in some way because I never got the endoscopic procedure done. But if I say that I have a ‘gluten allergy’ they think I am lying”
“Jane” was not looking for a label. “Jane” was asking how to give an honest answer which adequately and efficiently replies to a question about why she eats no gluten.
ANSWER TO FIRST ISSUE:
I think most everyone agrees that it is OK to say the answer to that question is Celiac Disease as long as the person answering never cheats and stays 100% gluten free. Over time and with our continued advocacy, listeners will begin to understand that consistent answer to that question. It doesn’t matter whether the person answering actually has an accurate Dx of celiac disease as long as they eat 100% gluten free. It only matters when they cheat after they answer Celiac Disease.
Now, “self diagnosis” is a completely different issue. I also agree that it is generally not wise to self diagnose; however, my Mom and I would neither be alive if I had not self diagnosed. So when is it wise to self diagnose?
ANSWER TO SECOND ISSUE:
You believe never. However I believe, when anyone has no other choice for whatever reason, it is OK to self diagnose as long as this person stays 100% gluten free and we should have compassion on people who are in that situation for whatever their reasons are.
As the healthcare industry, the medical community and the testing procedures properly catch up to the diagnosis of and distinction between Celiac Disease and gluten intolerance, people will no longer have to self diagnose. Unfortunately, in our current predicament, the quality of many people’s lives still depend upon self diagnosis and we should show compassion to and help those people as much as possible.
We may eventually reach your goal of everyone receiving a timely accurate Dx as soon as needed, but we are no where close to that goal yet, and in the meantime, everyone just has to do the best they can with the situation in which they find themselves, and we should not chastise them along the way.
The distinction with a very important difference between self diagnosing diseases is that:
(1) “self diagnosing Celiac Disease and eating 100% gluten free” will not hurt you as long as you have a properly nutritious diet. There is NO prescribed medication for Celiac Disease. You don’t ingest gluten is the cure.
(2) “self diagnosing Diabetes and attempting to improperly administer prescription medication or insulin can kill you (or self diagnosing any other disease treated with prescription medication).
NOT ingesting gluten will not cure diabetes. NOT ingesting gluten will cure CD and NCGI. INGESTING gluten will eventually kill someone suffering from CD or NCGI. This is a very important distinction when it comes to self diagnosis.
I am not sure I entirely agree with this statement , Hap, sorry.
“self diagnosing Celiac Disease and eating 100% gluten free” will not hurt you as long as you have a properly nutritious diet.”
Self diagnosing ANY disease and assuming that is what you have— is not a good idea.
“self-diagnosing” in the sense that you figure it out and then, get a confirmation/diagnosis through testing or doctor approval is NOT the same as someone “assuming” they have celiac and going GF BEFORE RULING OUT other disease processes.
Celiac is called the “great mimic” for a reason. People assuming they have a gluten problem and go GF may continue to have issues and could be neglecting a real health issue that has nothing to do with gluten at all.
(1) TtG antibodies can be elevated in OTHER disease states besides celiac. Not many people are aware of this.
There can be elevated TtG antibodies in liver disease, thyroid disease or other AI diseases. If this is the case, then doctors will go forth and use the other 2 criteria: Biopsy and genetic testing.
(2) But, there can be villous atrophy in other disease states too!
Causes of Villous Atrophy Other Than Celiac Disease
Human immunodeficiency virus enteropathy
Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)
(3) Plus, a gene test is not a complete diagnosis tool because many people have the HLA DQ2 and HLA DQ8 genes and they NEVER trigger celiac. One of those genes is necessary, yes but the presence of it does not mean someone will develop celiac.
” up to one third of the U.S. population
has the genes for celiac disease, but it
is thought that only 1-4% of them will
actually develop the disease at some point
in their lifetimes. This means that people
with DQ2 or DQ8 can develop celiac
disease, but the vast majority of them
aren’t destined to develop it.”
This is why there is a multi-faceted diagnostic protocol in place. Despite the pitfalls that sometimes occur, the blood work, the biopsy, the gene test, the symptoms–plus symptom resolution —all 5 of these criteria—are used to diagnose celiac.
That said, SOME enlightened docs will consider 4 of 5.
You guys may want to read this report from the
World Gastroenterology Organisation Global Guidelines
re: celiac and NCGS.
Irish (did you notice?)
I agree with you – thanks for correcting & filling in the details. I typed that sitting in a parking lot waiting on a client, but you know I am always willing to be corrected, amplified, explained etc because we are only interested in the truth and properly informing.
Hap, when I post information, I am not trying to “correct anyone” okay? 🙂
I do not know everything. Far from it. lol (although my critics have called me a “know-it-all”. )
I am just trying to present the facts about celiac as I know it, based on current research.
I am always eager to learn myself.
We’re just “discussing” here. I am not trying to be “an authority”.
I am just relaying information.
If it is my opinion, I say IMHO
If it is from a valid source, I provide it.
Just want to be clear on that. 🙂
Cheers and Have a great weekend everyone!
You are indeed a refreshing fountain of great, useful information and experience delivered in the most unassuming and kind, caring manner for which there is no need to apologize!
You’ll never find me among your critics.
Hope you and the Hubs have a great weekend also!
You, too Hap! It’s a glorious day here in South Florida
and now that I am well after years in gluten head hell**, you can be sure I view every single day as a gift.
Cheers and slainte! (Gaelic for “to your health” for those who may not know)
NOTE: “Gluten head hell” is copyrighted by IrishHeart. 😉
Now everybody, stop what you’re doing, go outside, look up and put your face to the sun…and say loudly “I’m alive! I’m alive!!..whoohooo!”
The neighbors will wonder what’s gotten into you and you will feel great. It’s a proven fact you can’t feel bad if you are looking up.
It’s almost as much fun as walking through the bakery aisle in BJs and with wide eyes, point at the stacks of white bread and shout “It’s poison, poison , I tell ya!””
Just to be clear – after many years of the medical community treating and searching for us, I self diagnosed myself and then my Mom that gluten was the ultimate culprit killing us – thanks be to God for answering our prayers beginning with the voice and educational mission of Jennifer Esposito – then our doctors confirmed my self diagnosis with medical science and now we are alive today! If I had not self diagnosed, we would both be dead by now. There is room for compassion for patients who must self diagnose for whatever the reasons. Being and staying 100% free of gluten is our cure – no other medication or treatment.
I’m self diagnosed with NCGS. For the past 10 years I’ve been trying to figure out what was wrong with me, constant gas, bloating, always constipated, fatigue, mood swings, migraines(silent), joint pain that would come and go randomly, and depression. I was always looking for answers,is it hormones out of whack, thyroid, candida, arthritis? I took antidepressants for a while for the depression but didn’t seem to help and I didn’t like taking them. I had looked at possible gluten intolerance a few years ago but didn’t really pursue it. Then something clicked last Sept and I decided to try going gluten free for a week. Within 3 days the difference was huge and the longer I went GF the better I felt. After I got accidentally glutened it was a wakeup call that this is not a test, it is real and I cannot eat gluten. period. I do wish that I was tested prior to going GF ( I refuse to eat gluten and be miserable just to risk getting a negative test back) However I did do the Enterolab test and after being GF still had a 73 on the Anti-gliadin IgA (normal is less than 10) I know some are skeptical of Enterolab but it really validated for me that I’m not just imagining this. Clearly my system is treating gluten as an invader. I tell people I am NCGS – some get it, some I can tell think I’m just following a stupid fad…. maybe I should ‘gluten up’ and let them see what a ‘fad’ looks like LOL!
I am trying to condition myself to say screw it, if they don’t get it, it’s not my problem. The only thing I need to be concerned with is not eating gluten. I don’t need anyone’s approval to do what’s right for me.
Bravo good for you Teresa! Dr. Ivor Hill who is now in Ohio and wrote over 70 peer reviewed journals and was part of writing the children’s guidelines for celiac could not read my daughters results as casebook study example.
So, he said to me, “Does it have to be definitive if eating GF makes her better?” No, it didn’t have to be definitive, however he did test again and end up changing her diagnosis to positive. Many physicians now believe CD to be progressive as any other condition like that would become and celiac as the more progressed stage of gluten sensitivity/intolerance.
My answer when people ask if I have celiac? “Probably.” I spent years with a diagnosis of “non-traditional IBS”, in other words, your stomach hurts and we have no idea why. After 3 surgeries in three months for an unrelated injury, I was constantly vomiting and couldn’t keep anything down; I lost 10 pounds in a month. Gastroenterologist was completely unhelpful. I started keeping a food diary and realized the worst bouts were after homemade whole wheat bread and couscous. Started researching celiac and made an appointment with a celiac specialist, who had a month wait. Because I couldn’t take the vomiting any more (and couldn’t afford to miss any more work due to it), I went gluten free on my own, and in three days, felt better than I had in 15 years! By the time I saw the specialist, things I’d never connected to gluten had cleared up, too–no more hives, no more vertigo, sinuses improved. Based on my medical records and a positive genetic test, the doctor said I probably had celiac, but I’d have to start eating gluten again for the biopsy. Neither of us saw that as being necessary, since I will never willingly consume gluten again.
My two cents, if you are in a situation where saying you have celiac will get people to take you more seriously, and you are fully committed to being gluten-free (no cheating), then fine, tell people you have celiac. Or “I probably have celiac, but I haven’t had the biopsy to make it official.” Or what my husband says to servers sometimes: “She can’t have anything that’s even touched wheat or bread, because she’ll be up all night throwing up and keeping me awake.” Gross but accurate.
I normally just say I have a severe sensitivity to gluten. I may throw in an example of something that causes me symptoms, like gluten residue left behind on hand-washed dishes/utensils. If I’m having more of a conversation with a person, I may also say I believe I have celiac disease although the diagnostic tests have not picked it up. I think this allows me to be the most honest with people. However, I see nothing wrong with telling someone you have celiac disease if you truly live like you have it (no cheating).
After Bart Greenhut WRONGFULLY (we’ll gratuitously assume because of Bart’s being previously misinformed – that’s sounds so much nicer than “out of ignorance”) accused The Gluten Dude, of all people, of posting “patently false and misleading” information on GDude’s own website, isn’t it is so ironic that Bart Greenhut may have prophetically described Bart’s very own actions, as follows:
“When someone knowingly produces false and misleading information, he is not servicing the community he purports to serve. Seems he’s exploiting rather than serving.
Thank you, Bart Greenhut
Since we have not heard back from Bart yet in more than 36 hrs, we do not currently know whether Bart’s wrongful accusations about GDude were intentional or not, so we can only HOPE that Bart has experienced a change of heart in the meantime and he does not really want to kill people like me by trying to interfere with and stop Gluten Dude from truthfully and accurately informing people like me about products that are marketed as “Gluten Free”, in accordance with federal definitions, but actually do and/or may contain some gluten, which will kill people like me.
So we can also only HOPE so far, until Bart Greenhut revisits us to clarify, that Bart is not “knowingly producing false and misleading information” by wrongfully accusing Gluten Dude and trying to stop GDude from telling us the truth about Bart’s products.
Further, we can only HOPE so far that Bart really does want to “service the community he purports to serve”, that is the Celiac must be 100% gluten free as much as possible from a dedicated non wheat facility community.
Further, we can only HOPE so far that Bart really does not want to “exploite rather than serve” us by either producing his products in a dedicated non wheat facility or stop molesting Gluten Dude and our caring community.
Bart, the bristles on the back of a lawyer’s neck stand up when someone is wrongfully accused of making “patently false and misleading statements”, which are very highly inflammatory accusations, especially when that someone is Gluten Dude, who is selflessly helping people like the lawyer for NO charge.
Bart, life really will help you out if you really want to help the Celiac community by safely and carefully producing your products in a dedicated non wheat facility because our community will get behind you if you keep us safe and not afraid to eat your products.
If you can’t afford to operate from a dedicated non wheat facility, we also understand – just don’t harass us or try to mislead us into buying your products when those products can either make our lives miserable or kill us.
With all due respect for and a tip of the hat to Jersy Girl:
It’s the good advice that you just didn’t take
Who would’ve thought… it figures…And life has a funny way of helping you out when You think everything’s gone wrong and everything blows up
In your face…And isn’t it ironic…don’t you think
A little too ironic…and, yeah, I really do think…
“Ironic” by Alanis Morissette
It’s a patent falsehood (read: lie) to suggest that our cookies aren’t gluten-free. But most importantly, our bottom line: Our cookies are buttery, Belgian chocolaty, incredibly delicious and independently tested 5.6ppm gluten-free.
I’ve contacted “Gluten Dude” through his website / Facebook, his blog and by email for over a year. Sadly he deletes my posts and continues to propagate lies.
I’m easy to find, I don’t hide behind an alias or a website “front organization”, I don’t need to.
Ok Bart…now you’re starting to piss me off. I have responded to you on three different occasions. I have deleted none of your posts.
You just lost all credibility with me. You answered NONE of KV’s questions and I can only assume now that your wrongful actions are intentional.
As much as I enjoyed Amy’s soups, Amy’s was at least honest and emailed a very nice informative reply; however, Amy’s products still made me sick even though they were “Gluten Free from a wheat facility”. I would eat Amy’s products if I could. I would even try Amy’s products again if they are ever able to produce from a dedicated GF facility.
However, as a result of your insensitive, accusatory and unhelpful reply, I would NEVER try your products now if the Pope and the President each certified your products had absolutely positively not a speck of gluten therein and they were free as a gift because I can no longer trust you or your company to be honest with me.
As I fully explained in detail even 5.6 ppm is not gluten free for someone like me especially if they are produced in a wheat facility. You simply just repeated the same useless information without any explanation about your testing and manufacturing facilities.
As a further result of your actions, I don’t believe anything you say about Gluten Dude. No use wasting your breathe or ink on this website for me.
Gluten Dude is obviously not hiding behind a “front organization”. There is a huge difference between “hiding” and “creating a brand”. I easily read more information than I need to know about Gluten Dude, his family, his business, etc. on the internet. He is a fine upstanding business and family man and your wrongful, inflammatory attacks only injure Bart Greenhut and Bart’s cookies’ reputation or lack thereo, as the case may be.
Gluten Dude, I am no longer wasting any of my time with Bart Greenhut and Bart’s highly questionable products. I have now shaken Bart’s cookie dust and his questionable manufacturing facilities from the bottom of my shoes. Now I can believe from my own experience the reviews on the internet about Bart’s pitifully small, certainly Not best in the world, cookies.
You really are having a hard time telling the truth about anything. You said in your last comment:
“I’ve contacted “Gluten Dude” through his website / Facebook, his blog and by email for over a year. Sadly he deletes my posts and continues to propagate lies.”
Another BIG OBVIOUS LIE from Bart! On August 15, 2013, Gluten Dude’s blog post includes your very own email complaining about Gluten Dude’s prior blog post that Bart’s still complaining about.
Bart, I just read your email. Gluten Dude obviously did not “delete your post”.
Now I’m really even more uncomfortable about Bart and his products. Bart, it’s OK for you to sell your products to the “fad non gluten eating people” – just quit coming on this website and harassing Gluten Dude and our community and trying to mislead us into buying your products that are dangerous for us to eat because you are producing in a facility using wheat.
I just thought I was through wasting my time on Bart Greenhut until I ran across proof of another one of Bart Greenhut’s blatant lies. I hope I really am through wasting time on Bart now.
Bart, Gluten Dude is only trying to keep us from getting and/or staying sick. There are plenty of people in the world who can eat your cookies – those people just don’t include us.
Gluten Dude – you really are exhibiting “the patience of Job” with Bart – just another reason for me to admire your advocacy!
Definitely sympathize with the above story. I too am one of those who can’t come up with a diagnosis to prove that I have celiac, despite the fact that gluten does me in completely (as does dairy) and processed foods made me horribly sick when they are not 100% gluten free.
I tell people I have celiac disease because originally when I went gluten free my family and I were uninsured and could not afford insurance, much less a test. I went back on gluten for two days to get the test once I had insurance, but it made me so sick that my mother and I both agreed that getting the positive result would seriously damage my health.
Now that I’m here at college I had one doctor tell me that I probably have celiac but my test came up negative (probably since I had eaten gluten free for nine months) and that the only thing that could “prove” that I had celiac was a genetic test (and even then it’s so hard to tell).
It hasn’t been a problem yet, but I still fear that if I need special accommodations at school such as a special dining plan (at the moment I cook at home) that I won’t have the doctor’s note to prove it.
It’s not hard to tell, Sara, the genetic test is pretty specific.
HLA DQ2 or HLA DQ8.
please read this
If this doc is willing to do it, get it done.
I tell people I am gluten intolerant but that I am probably an undiagnosed celiac. Unfortunately, some people [establishments] do not take it seriously when you do tell them you are intolerant. So…sometimes it is easier to say you are celiac just to be safe- either way, you will feel the symptoms of being glutened. 🙁 And…yes Gluten Dude, so agree with you –> ‘If you say you’re celiac, whether you are or you not, represent the community well. That means no cheating…period.” always, not just if and when it suits your purpose. 🙂