It’s funny…yesterday I had the pleasure of being interviewed for a new documentary film about living with celiac disease and gluten intolerance. The filmmaker (and his daughter) both have celiac disease and he is producing this film to help get the truth out about our disease. Cool stuff.
Anyway, he asked me a lot of questions about my blog including “What do you enjoy the most about your blog?” I gave him three answers. 1) I like being a strong voice for the community. 2) I like the platform I’ve provided to give others a voice (it’s not just about me!). 3) I like the fact that it’s helping people.
This is all true but then of course after the interview was over, a bit of self-doubt crept in. Just the nature of who I am.
And then I got this awesome email last night, in regards to my celiac symptoms infographic I posted last year.
This past January, I started having A LOT of medical issues and I legitimately thought I was dying because it was the sickest I had ever been. One day I was scrolling through Pinterest and I saw this and my life suddenly made sense!
It led to my diagnosis of celiac and now six months later I’m doing much better!
THANK YOU SO MUCH!!!!
So I want to share this infographic again (see below). I’m sure many have still not seen it and could benefit greatly from it. Heck, I’d like to see it plastered in doctor’s offices around the world.
If you know someone who has some of these symptoms, please pass it on to them.
The life you save may be theirs.
Thanks!
Celiac Disease Symptoms
Share this image and get the word out.
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Just could not agree more!!! I actually send people to your blog to find this chart!! I feel like a should carry card sized charts in my purse to hand out to people I meet – last week I was on vacation and someone started talking to me because they heard me order. We then started talking about all of her symptoms and failed doctors appointments – horrible. We didn’t have much time and the most important info I could give her was “go to the gluten dude website, look for the symptoms chart and then start reading his historical blogs and all of the comments!!” She left with HOPE!! 🙂
LOVE THIS GLUTEN DUDE COMMUNITY!!
Hope is a good thing. Thanks Camille.
Thank you for this graphic, I will share it. I JUST had a DR. say that celiac was only diarrhea and weight loss, which I never thought I would hear in 2014.
That sound you just heard was me sighing…very loudly.
Gloria, one of mine, doctors, said stop the gluten, it’s a fad and OVERDIAGNOSED! What to even say????
I’ve been following you for over a year and I strongly admire you and what you do for celiac community. I now have my spouse and father following you as well as others. My father, a chemist, has researched this disease down to the last cell! He and I have learned soooooo much. Spouse relies on me to provide him info, sometimes I see he doesn’t fully understands but he is 100% supportive and also gluten free. I’ve been to three doctors in past 2 weeks and received 3 new diagnoses, it’s unbelievable! Oh yah, they lost my labs, switched Dr., would not go there, meaning celiac. I asked all 3 doctors why do u have raised eyebrow with this disease. They all had different explanations. The weak me started crying somewhere and I said you make me feel so lonely, WHATEVER, back to myself! I was diagnosed 3 years ago, it’s right there, look!!!!!!! I didn’t mean to say all this, really. Sometime I’ll post what each doc said, one who is my friend.
All I really wanted to say is thank you and when I first saw pic, I was sooooooo happy! Today I’m sending to all friends that don’t understand, secretly don’t want to I believe, which is a shame. Kim
Thanks for spreading the good word Kimberly…
I also came across this in the process of trying to figure out what was wrong with me. I have sent this out many times and just posted it again on my blogs facebook! Thank you for doing this, thank you for sharing and thank you for being a voice for so many.
Thanks Dawn. Love your domain name 🙂
You should be VERY PROUD of this chart. It’s the best resource I’ve ever seen related to celiac!
Much appreciated MJ.
Thank you for this graphic, Dude. My next step is to put it out there to my children, brothers, and first cousins. Maybe now they will all pay attention and take iit seriously enough to insist on being tested. Everyone of them can relate to some, if not most of these symptoms. They all think I am over the top with this disease, and have been asked to please stop talking about it.
I can’t!! This disease almost killed me, and it is not through with me. Seventeen months diagnosed and I am still experiecing new symptoms. This disease has a hold on my brothers, whose doctors do not know a damn thing about celiac. I am totally frustrated with all of them, but I will not give up on them.
I just want to thank you, and this wonderful community for all the support and love you put out there. It is comforting to have a place to go.
Thank you and be well.
Thanks Lydia. You can only push someone so much to get tested…at the end of the day, it’s on them. Good luck.
I hate that for you, Lydia. My family is also “oh my gosh, here she goes again!” about it. One thing I have discovered since joining so many online communities that deal with Celiac is that we are not alone in that battle! It seems like I hear more & more stories from people whose family (or even their spouse) think a person is “over the top” or “takes it too far” (that’s one I hear all.the.time. from my family, as well “helicopter mom” because my 3 daughters also have Celiac. That second one REALLY sticks in my craw…..but I digress). I don’t understand how our loved ones can be so mean and petty about something that we are doing to make ourselves healthy and happy. I have nieces and nephews with symptoms, as well as a mother with severe symptoms, but not a single person in my family (other than my 4 children) has ever been tested. Not ONE!!! You can tell them all day long how they need to be tested but they will or won’t on their own accord, as GD says. You can lead a horse to water…….well, you know.
Sorry for the rambling rant; I just wanted you to know that you are not alone!
Thanks for posting (and for the link for the graphic). Included it in my blog post: http://www.proverbialcat.com/blog/gluten-sensitivity-under-attack
I just got back from the dentist where I explained celiac to the hygienist after I made sure everything that would go in my mouth was GF. She said, “wow you are really well educated about that.” 90 percent of my celiac knowledge comes from you and Jennifer E. Thank you Dude! Is lymphoma on there anywhere that I am missing? I know not every symptom is included?
I assume that’s 46% from me and 44% from Jennifer. Totally kidding. Thanks.
Ok, long time reader, first time commenter. I printed this off and took it to my doctor and it is the first thing you see when my chart is open. She is my general practitioner, not the doctor that diagnosed me, but she gets celiac. But she had no idea it affected so many areas of the body. She recently got a new nurse who when she saw this said that she was going to do more research on celiac because in her schooling they didn’t even spend one day on it. On my next visit she told me how much she learned from spending time doing research and that she felt like she could help direct people to getting tested who may not have.
I also was able to persuade my daughter to get tested based on this. She has a lot of the symptoms. She did get tested (blood tests only) and they came back negative. But she did end up needing her gall bladder out and for now she is doing better. But in time she may decide to try gluten free again.
So I did not intend for this to be so long of a comment, but I needed to say thank you for making this info graphic available. It has made a difference for me and I know it will for others as well.
Gall bladder malfunction is associated with CD.
This list is representative of some celiacs and their symptom presentation. Many of us contributed to this list, but it is by no means comprehensive.
There are over 300 symptoms and AI conditions/diseases associated with celiac.
http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
Peripheral neuropathy , for example should be included as many celiacs suffer from this before diagnosis.
This disease affects the body head -to-toe . This is why Dr. Fasano calls it a “clinical chameleon”. I have also heard it referred to as the “great mimic” because it appears to be something else (such as “IBS”, GERD”, FIBROMYALGIA’ “etc. etc…) when in reality, the underlying cause is celiac.
Thanks for chiming in Joy and as always spot on Irish.
Correct again Irish. I’ve seen the link you included before. It’s pretty amazing…and a bit overwhelming at times.
The thing is….celiac can and does cause so many issues, so
it’s important that people look at their health histories as a whole
and get help from a doctor who is willing to get to the root of the problem. Symptom-treating is ineffective.
Agreed. Looking back over the decades I can see how a variety of health issues were connected, before finally being dx’d so late in life. #DocRant
Yes. I still have doubts. With all my symptoms I still question myself. I have a positive blood test. A positive biopsy and a lot of symptoms have been better on a gluten free diet. Some haven’t, it takes time and I was just diagnosed at the end of April.
My doctor, who is well known for being a great diagnostician, says ~Celiac is “trendy” and if that’s what’s really wrong…great! We have a diagnosis. But since things tend to be trendy, the medical community will jump on the current popular bandwagon and the result is many people get misdiagnosed.~ He doesn’t want that to happen so he is trying to test me for as many other things that it might possibly be.
I finally pulled the plug, so to speak. My wallet is empty.
I was diagnosed with celiac disease about 13 years ago ( when it wasnt “trendy” and NO ONE sold gluten free anything). I have def. experienced almost everything on that chart at one point or another in my life. People think its just a food allergy, so its awesome that you are trying to educate people on what Celiac can do to your body.
Non-celiac here.
I don’t want to bash your infographic now nor am i trying to offend anyone. It’s great as a first source of information and encourage testing actually like the e-mail you received has shown.
But 90% of the listed symptoms are just signs of malabsorption/malnourishment, even the neurological ones. So, technically, they are (should be) well known and recognized for a long time within the medical community.
Also, some of the symptoms are likely not celiac-related at all.
Some describe the same symptom more than once, e.g. depression, which includes isolation, loss of interest, sleeping issues, suicidal; leg cramps/muscle spasms; acid reflux/GERD; anemia, pale skin, fatigue, etc.
Therefore people might be denying the claims for a lot of these symptoms as celiac symtomps. As an outsider, i think this would add to the problem of not being taken seriously, leaning towards the popular “gluten is evil” conspiracies.
So, yes, good work to encourage testing, for which describing symptoms less medically helps of course.
As an actual listing of symptoms and displaying the severity of the disease, however, this is highy inaccurate maybe even overplaying it. In that department it might do more harm than good.
The CD center Chicago in the above link does the same mistakes, in my opinion, additionally listing very rare comorbidities and possibly just coincidences (headache, migraine, obesity, weight gain, ..).
KLAUS said: “90% of the listed symptoms are just signs of malabsorption/malnourishment, even the neurological ones. So, technically, they are (should be) well known and recognized for a long time within the medical community.”
Well, they “should be ” klaus, but the average time it takes for diagnosis is somewhere between 6-12 years (or for some people decades), so they aren’t “well-recognized” by the medical community at all. The medical community symptom-treats, so you are sent to a gastroenterologist, a dermatologist, an allergist, a rheumalogist, an endocrinologist,, a gynecologist, a urologist, a pulmonologist, a cardiologist……….and sometimes, a psychologist…. meanwhile, you’re dying a slow death and taking a bunch of drugs that are doing squat.
And yes, that is the whole point about malabsorption!…but many doctors do not see malabsorption as a common problem in middle class America (wasting diseases are rare) nor do they recognize celiac as a “adult-onset disease”.
Some still think it is a “rare childhood disease” that causes failure to thrive and you would not possibly ‘develop celiac” in middle age..(wrong, wrong again)
That’s what many of us heard, for years–while we got sicker and sicker.
The best someone can hope is that some celiac-savvy doc sees the collection of symptoms as clinically significant and then does the proper testing. This is where being your own advocate, armed with relevant information, is so important.
.
Could not have said it better myself.
Yes.
Um, if I may Klaus, it is vital to list the very rare symptoms. Part of the reason why so many people go undiagnosed is because they don’t fit into a neat little box of obvious symptoms. I for one got fatter and fatter, (kinda wishing for the weight loss type of coeliacs) despite a very controlled diet and was finally only diagnosed by a neurologist after years of cerebral hypertension. Rare, sure. A symptom of coeliacs, yes. If I had by chance seen this awesome illustration, I might have thought to think coeliacs instead of following a blind path down the neurology road. Because if you don’t fit into the the neat list of symptoms, you don’t even think of coeliacs – why would you.
So THANKS Gluten Dude for this great piece of work.
PS. It was this wonderful, informative image posted on another site that brought me to your blog.
Love this. It makes me feel sane and not alone…after wondering what was wrong with me for so long! I can trace some symptoms (digestion, anemia, paleness, hair loss) back about 6 years, but a lot of the others have really developed in the past ~18mos. Wondering if anyone else has experiences this / is it typical for symptoms to worsen over time? I was fine eating gluten as a young kid but my earliest problems started around age 12. But even then it was very gradual.
A lot of the time celiac disease is triggered by stresses in your life. My main symptoms didn’t start occurring until I moved out of home. But after thinking back on my childhood, I remembered that I never liked bread and I got stomach bugs a lot (possibly gluten attacks) and while the rest of my family are quite big, I’m tiny. So sometimes the symptoms aren’t obvious and they start developing over time.
Olivia,
(Pardon my very late response to your comment.)
My symptoms certainly worsened over time. I started noticing that the occasional smelly gas and near diarrhea was getting to be more the norm than the exception around Thanksgiving three years ago. Any the “acid stomach” was also getting to be a more regular thing. At my next annual physical, my doctor saw that I was getting anemic and showing other signs of malnutrition, including weight loss. In followups to that, he ran a celiac panel and said the blood tests were strongly indicative of celiac disease, and referred me to a gastroenterologist for the biopsies. Those took place a year ago (Sept 11, 2013).
I hadn’t really associated leg cramps with it all, but those went from too darn frequent at night to rare after I started the diet, and on reflection, I realize they were getting more frequent in the couple of years prediagnosis. And the cough that had been going from occasional to chronic had also built over that time, and pretty much went away after two or three months on the diet.
So yes, you’re not the only who saw a progression of symptoms.
Dick
Do people with non-celiac gluten sensitivity share these same symptoms too? So many (seemingly healthy) people around me are going gluten free & claim they suffer the same symptoms as celiacs but it doesn’t seem logical that one would have vitamin deficiencies (for example) if the villi isn’t damaged. By the way, this is a great chart! I have/had so many of these symptoms growing up & they never seemed related (and I was told the root of the problem for almost all of them was because I’m a woman!).
I know some people who have have NCGS that suffer from many of the symptoms in the chart. I don’t have any information or links to add but Gluten Dude, Irish Heart or a few others may have something to say about this. Whether or not a leaky gut may be a contributing factor is another question.
There are people with neither celiac nor NCGs who have various vitamin deficiencies. It’s not always a result of malabsorption.
Some women are iron deficient as a result of prolonged periods, for example. Some people have other autoimmune disease that can create B-12 or Vitamin D or folate deficiencies. Vegans may have B deficiencies, etc.Sometimes it results from chemotherapy, or from overuse of antibiotics and sometimes it is from the overuse of prescribed heartburn drugs, which reduce acid production in the stomach (acid is needed to absorb vitamin B12) etc….
To answer the question though:
“Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012), individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.
If the symptoms are so similar, how is it different from celiac disease?
Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease. It is not accompanied by “the enteropathy, elevations in tissue-transglutaminase, endomysium or deamidated gliadin antibodies, and increased mucosal permeability that are characteristic of celiac disease” (Ludvigsson et al, 2012). In other words, individuals with non-celiac gluten sensitivity would not test positive for celiac disease based on blood testing, nor do they have the same type of intestinal damage found in individuals with celiac disease. Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.
Research has also shown that non-celiac gluten sensitivity does not result in the increased intestinal permeability that is characteristic of celiac disease. Increased intestinal permeability permits toxins, bacteria and undigested food proteins to seep through the GI barrier and into the bloodstream, and research suggests that it is an early biological change that comes before the onset of several autoimmune diseases.”
http://www.celiaccentral.org/non-celiac-gluten-sensitivity/introduction-and-definitions/
I/We can always rely on you Irish!
“Increased intestinal permeability permits toxins, bacteria and undigested food proteins to seep through the GI barrier and into the bloodstream, and research suggests that it is an early biological change that comes before the onset of several autoimmune diseases.”
Yep, that’s what I’m dealing with and have been “on it” trying to heal the intestinal permeability for over a year already. Hopefully some of the other auto-immune disorders will reverse themselves according to the protocol my well-respected nutritionist has me on.
Thanks so much for the info & links!
Please don’t have any doubt ever….. if it tries to sneak in…. just hit it with a gluteny french loaf!!! It has changed my world to have someone to rant to/ to read other rants and so on. I can’t help but be oh so damn positive to the world, but silently in the privacy of my own heart I want to rant and rave and scream and shout. You have provided the ‘grown up version’ of all coeliacs sites. I’m over looking for recipes – now the real life issues of coeliacs have started to bite, when the thrill of the chase for the perfect gluten free pastry ended.
When I picked my young son up from school on Friday, beaten and blooded because some thugs in his class thought it would be fun to force him to eat gluten, and some teachers thought it was just boys being boys……. the only safe place for me was your site.
So NO self doubt ever Mr Gluten Dude.
Thank you so much for having the balls to say it as it is.
Wish I’d found you yeas ago when I got diagnosed…at age 50. Would have made life *much* easier.
Found you today because, yet again, I got chastised by someone because I still drink coffee. (Not a medical professional, mind you, just an acquaintance.) Now, the last time I had a CD panel done, my antibodies were less the 15. So, yeah.
Thanks for fighting the good fight…and keep up the good work!
Don’t be taking our coffee away 😉
We’ll here we go again. The Washington post is reporting the end of the GLUTEN FREE DIET. Saying people are just going to pick on you for saying you have a problem with Gluten and ZERO message about Gluten Sensitivity http://www.washingtonpost.com/lifestyle/style/backlash-has-begun-against-gluten-free-dieters/2014/07/06/61953aba-f7be-11e3-a3a5-42be35962a52_story.html. Now get ready, tomorrow every major news outlet will be cheering about the Washington Post article about the end of Gluten free. These people in the media disgust me, because the do not care about hurting CELIACS or Gluten Intolerant people
I read the article you linked to henry force and I did not see it that way at all. I did not feel “hurt” by it in any way.
I thought it was actually a pretty balanced article that discussed all aspects of the GF controversy and highlighted some of the very things we say ourselves–the GF fad is, in fact, a double-edged sword for those of us with celiac. (or NCGS).
I am tired of the phrase “gluten free” myself
People who are self-proclaimed “gluten freers” who then eat pizza when they are drunk or who pick off croutons but then, eat a kitkat bar later in the day are the ones we should be annoyed with–as they are the ones who seemingly make a mockery of the medical necessity we have to eat GF.
I know fellow celiacs who constantly cheat. I do not know whether to laugh at, pity or choke them. I just shrug my shoulders now and say. “Your call. Your health is at stake.” And I let it go.
I have had people ask me “You have celiac, so what do you think about people who go GF “just because”?” My response is: “I think if they feel better, they may have a gluten issue.” And I leave it at that because who am I to judge?
I do not like it when a server at Bonefish Grille asks me “so should I bring the bread or not?” because the people she had waited on before me ordered GF but then said “oh, what the heck, bring the bread basket when you come back!” She seemed perplexed by this behavior and so, I told her “then, they don’t have celiac or if they do, they don’t give a crap abut their health. I do.”
Does their behavior in any way impact my need to be GF? Does it make the people who know me and what I went through before diagnosis think MY GF diet –which was, literally, life-saving—is a joke? Absolutely not.
My point is: who gives a rat’s butt what anyone says? If you are GF for medical/health reasons, you need to find a way get past worrying what people say about it. For your own well-being.
Cheers!
My response on FB was the same. I actually thought it was a pretty well-written article. As compared to the one I just blogged about five minutes ago.
well, I’ll take a look….:)
I have them bring the bread…because I am the lone celiac in the family. As long as it stays on the Evil Glute (TM) side of the table, it’s all good.
I never cheat. Got minorly glutened on the Fourth…ate one bite of a hamburger (no bun!) at a picnic at a friend’s house. She ran up and said. “DON’T EAT ANY MORE!” Her husband had mixed breadcrumbs into the burgers. I’d asked about what he’d seasoned the burgers with, but didn’t think to ask about breadcrumbs. Luckily it was a *small* bite and, though my tummy got rumbly…I didn’t have my full on gluten reaction. (Which involves a great deal of time spent in the bathroom.) A little brain fog…and a bad headache…but that was it
Live and learn.
Since neither the hubs nor I eat gluten, there is no point in bringing bread. 🙂 I tell them that up front…so when she asked me
about the bread basket, it signals to me she has met enough trendy GF-dabblers and is making sure I mean it.
If we dine with non-GF friends, they get bread. It’s not a problem that it’s on the table. It’s not bothering me over there. lol
The trendy types are the problem.
Dropped an “n” Evil Gluten (TM) side of the table. 😉
As someone who recently went gluten free, this chart pretty much sums it up. If I eat certain foods I pass out, get a fever, moodiness etc. It’s amazing how much difference it makes, and it sucks that so many people try to turn it into a fad. Gluten free saved my life dude. Thanks for the post.