Dude Note January 2024: I’ve updated the infographic to bring it up to speed. Check it out.
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I think most of us will agree that the medical community is just a tad behind when it comes to fully understanding celiac disease symptoms. We have heard plenty of doctor horror stories to attest to this.
And the internet can make things just as confusing.
On one side of the spectrum we have the websites who list the celiac disease symptoms as simple digestive issues: stomach ache, bloating, etc. Yes, that plays a large part but we all know it goes WAY beyond that.
And on the other side we have the sites that list hundreds of possible celiac disease symptoms, which may indeed be the case but it doesn’t say which ones are the most common and which ones could be a stretch.
And I believe that most of these websites get the list of symptoms from the medical community.
I wanted to do things a bit differently. I thought it would be extremely helpful to get a complete list of celiac disease symptoms directly from the best source possible: those suffering with this disease.
So a few weeks ago, I asked you “what are your celiac symptoms?” and your responses (as usual) were fantabulous.
To make the list of celiac symptoms as accurate and easy to read as humanly possible, without listing every single possible symptom, I only listed those that were mentioned by more than one person. And the symptoms that were mentioned the most often were given extra prominence. And on top of that, I broke the symptoms down by category.
Now I could have just listed them on this page and been done with it. But after all this effort, wouldn’t it be nice to come up with something a bit different? A bit more visual?
So I got my creative juices flowing.
The result is the following infographic. To see the image in its full-size glory or to download it, just click it.
I am hoping you will all share this across all of your networks so we can really get the word out that our disease is not a simple belly ache.
Instructions for sharing the infographic can be found below the image.
Celiac Disease Symptoms
Share this image and get the word out.
To embed this image on your website (and THANK YOU in advance), simply copy and paste the following code. If you have any questions, just ask.
Omg you are the best!!!
You nailed it. Well done, GD. Thanks for your tireless work on “our” behalf.
Amen to that Sue!
Awesome list Dude! I shared it on my page and will do my best to circulate it to all of my friends and family members who are in the medical community. I hope that it leads to many new diagnoses during Celiac awareness month.
Thank you! Please let me know if I can do anything else to help…
Jess
Thanks very much Jess. Will do.
I have been ill wth IBS for many years, however, it’s only been the last few months I have been really ill in any food I have digested. I have had bad vomiting, fevers,chills, constipation, terrible crook stomach, although I was diagnosed wth an umbilical hernia that has given me pain etc the last 2yrs. Many years ago I had a gall operation that was so bad I developed jaundice, they took my gall bladder out wth stones, it was badly diseased at the time. When I was just too sick lately my doctor sent me for blood tests, Twice, I didn’t tell him I have one grandchild wth diabetics 1 &another already wth celiac disease, Thyroid problems are Rampant in our family, Diabetics, &Celiac wasn’t ?..Allergies are. Iam Anaphlanx from bees. Anyway, I have to wait 9wks to see a specialist to be Gene tested, I was getting sicker &sicker, my doctor said the problem was wth the small intestine. While iam waiting I couldn’t wait in horrible pain anymore, so I put myself on a celiac wheat free diet, already in a few days my lower stomach is easing off the pain & settling down. I just couldn’t take the pain any longer. Just in that short time my stomach is Heaps better, still a bit tender. I will still have my gene testing done as it’s necessary, I’m convinced that was the problem that probably was diagnosed incorrectly yrs ago. I appreciate all the info I have read on this matter. Thank you
Jenny
Whoa. There is a celiac awareness month? When is it?
In May.
I pinned your infographic to my board. I actually created a new board just for this. You did a great job. 🙂
Too cool. Thanks Laurie.
Thank you so much for this. It amazes me to see how much more symptoms I used to have, without realizing it was all a part of the not diagnosed Celiac.
Not only is this list usefull for people that might have celiac (who are not diagnosed yet), but also for the people who do have celiac.
Great list! Thanks for posting! I am printing it and sending it off to my GI doc!!!! I’m sure he will appreciate it greatly!!!!!!
Great. Let me know if he/she responds to it. Would love to get a doctor’s feedback on it.
Great job, Gluten Dude! A+
Well done. Thanks for the celiac awareness fuel. I’m powered up to be promoting this every where I can…
Thank Kelly…
Awesome graphic. It’s crazy the kind of symptoms gluten can cause. Just sent it to my husband to share with a co-worker of his, who we’ve been telling to get tested for years. She’s got a ton of these issues – hopefully, she’ll decide to go ahead and have it done!
This is great! Was vomiting not a common symptom. Once a reaction starts for me, thats what hits me for the first 12 hours…. I thought I saw some comments about that on the previous post.
I would be interested in finding out how common it is.
Thanks for putting this together, it is amazing!!!
HI Katie,
My daughter (25) starts vomiting within 40 minutes of contamination. If she does not take preemptive action (phenergan or zofran depending on how coherent she has to be) she does not stop until the gluten has passed. She then has 2 weeks of brain fog and general aches and weakness.
I know of several others that react with vomiting.
Thanks GF MOM!! Thats good to know. I get distention and BAD reflux immediatly and within 12 to 24 hours the vomiting starts and that usually lands me in the ER. Good to know someone else reacts that way too!!!
I vomited all night last night because I got glutened.
I am the same . It’s horrible . This happened to me the other night . Only happens seldom. Then I do have other kinds of weird symptoms depending on the gluten or if it’s ingested or through external exposure of gluten amongst other things including food ingredients and allergens so much almost everyday is something different . I had my celiac disease under control till the other night. Though I don’t think it impacted to much of my villi . When I first found out I was rushed in ambulance I couldn’t lift my arms and I couldn’t hold any food down . I was so dehydrated. The doctor said all my villi in small intestine was burned off I only had pockets and I was put on hemax an iron supplement and a few other things . That big explosion took place 20 years ago though I had at birth except nobody knew what was wrong with me . I was sick all the time and had rashes and tummy aches that my mom would have to call the dr in middle of night there were times dr would come in bad snowy weather. I missed lots of school but was active and involved in school. Thanks to my parents . I am lucky my parents didn’t ever make my sickness obvious to me I suppose that was for my best interest and confidence about myself .
yep I never used to vomit, until i got so intolerant. some Chinese herbal meds had gluten in them and 2 hours later. yak.
I know what you mean . It doesn’t take much of that gluten to start up the vomiting . It’s just an awful feeling .
So well done!!! Love it thanks 🙂
Well done, my friend!
(um, interestingly curvy female doc in heels, no less) 🙂
The remaining host of symptoms & associated conditions can be found here:
http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
.
nice job on this.
thank you, GD and all those who contrbuted to this list. This is the perfect tool for spreading the word for Celiac Awareness Month! I’m always appreciative of the efforts made here.
Awesome list.
I hope this isn’t too late. warts-hands and feet, stretch marks on back during teen years due lack of nutrition during growth.
Perhaps on part 2 I can add 😉
Do you have connective tissue disorder along with cd? Some of us do have that . I was told by a dr to drink shakes to absorb nutrients . I don’t know . I tried but nutritionist said it’s good to chew . Are you stable with nutrients as of now?
OMG this is awesome. i literally have a ton of these symptons that i never knew could relate to celiac disease. i’ve been trying to find reasons for why i’ve had vision problems, dizziness, hair loss, and different weird heart issues and this addressed them all. i’ve been going nuts trying to pin a problem that could relate to these issues and it turns out i’ve known about it all along. Quick question for anyone experiencing hair loss: does it grow back? im 23 years old and in cosmetology school and people always mention how fine my hair is. i don’t look like im going bald or anything i would just like to get some of the density back in my hair and didn’t know if it was a lost cause or not. also my shower drain is ALWAYS clogged. at one point when my celiac is at its worst i remember conditioning my hair and having a ton of hair come out and freaking out. good to know im not alone.
There is one symptom i have that was not addressed and not sure if this might relate to celiac or some other underlying condition. i get really bad abdominal cramping randomly. feels like my intestines are in knots some times. my doctor said it wasn’t consistent with celiac disease, but part of me feels like it might be. does any one else get this? if so, have you found any way of alleviating the pain.
sorry for the book just super curious. i’m about to celebrate one year gluten free in may so im still kind of new to all of this, and my doctor isn’t the best help with answering my questions.
-Lindsey
Then you need a new doctor IMHO 🙂
Hi Lindsey!
” i get really bad abdominal cramping randomly. feels like my intestines are in knots some times. my doctor said it wasn’t consistent with celiac disease, but part of me feels like it might be.”
Well, saying it’s not “consistent with celiac” is not necessarily true. He is probably right in that you’ve been GF for a year now and really should not be suffering with this continual pain unless something else is going on or you are not dietary complaint (as I am sure you are!) 🙂
Has he done any follow up studies to rule out other inflammatory bowel disease or structural issues (Crohn’s, IBD, diverticulitis, etc)? Has he done a scope of any kind? Have you ruled out other food intolerances? Is it pelvic floor pain? gynecological pain?
Someone should be able to give you a better idea of what’s going on. A GI tract follow- through study with barium swallow might be in order.
My Gastro doc did one on me (and I think every celiac patient he has in his care.)
You should not be in pain, IMHO. Hope you figure out what’s going on and get rid of that pain soon. Best wishes to you!
I had an endoscopy and colonoscopy with biopsy to diagnose my celiac (the blood tests came back negative, except for the gene test.). he did tests for crohns, but they came back negative too. he still wants to do another scope but last time i was incapacitated for a week afterwards. i do not handle scopes very well. i’m finally starting to feel better with the pain coming less and less, so i think it might have taken me awhile to adjust to the diet. as for the diet i tend to be very strict, but i do go out to eat every so often (99% to restaurants with a gluten free menu.) I’ve never felt ill after eating out. anyways, they ruled out IBS so i don’t have that. i don’t know what it is. abdominal cramping is my main complaint after being glutened (only been glutened twice that i know of). i can only describe it as being like bad gas pain, except there is no gas. however what sparked the test for celiac disease was last year when i was hospitalized overnight with inflammation to my terminal ileum. my doctor seems to be very content with the celiac diagnosis, but is inflammation a result of untreated celiac? i keep getting mixed messages from different sites so i figure it’s best if i ask people who actually have the disease. thanks for the response!
-Lindsey
Count me in the bad cramping, stabbing pain. You need a new doctor.
that is so reassuring to hear! i thought i was alone in this. been looking into getting new gastro anyways seeing as i was placed into pediatrics even though i was 22 when i was diagnosed. think it’s time for a big girl doctor. 😛
“abdominal cramping is my main complaint after being glutened (only been glutened twice that i know of). i can only describe it as being like bad gas pain, except there is no gas”
Well, this clarifies things a bit. Your first post did not say “after being glutened” so I thought you meant you had this all the time even though you’ve been GF for a year..
Anyone is going to have abdominal cramping after being glutened, hon.
YES, chronic inflammation is what comes with celiac. “itis” means inflammation and the concurrent “itises” people have like arthritis, thyroiditis, sinusitis, gastroenteritis, etc.. those are a result of celiac left untreated.
Inflammatory responses take a long time to die down, but at your age,
you should heal more quickly than us dinosaurs who are DXED so much later in life 🙂 (even though I exhibited signs at 22, no one ever thought of celiac back then, so I acquired dozens of complications in the next 30 years.)
It is fortunate you were Dxed early in life. Chances are good that you will have a long healthy life, provided you remain 100% gluten free.
Please do everything you can to ensure you are not being cross- contaminated.
Read: Real Life With Celiac Disease by Melinda Dennis and Danile Leffler –awesome articles!!! I love this book and I wish I had read it right away. Might have saved me a ton of research. 🙂
crap sorry for the confusion. i do get abdominal cramping every so often not just because of being glutened. after being glutened though i can be 100% assured i will get massive cramps. it seems to have calmed down for the most part, but does rear it’s head every once in awhile to let me know it’s still there!
Lindsey, I still get random cramping. I am over five years GF, and actually just had the horrible, horrible cramping the other night, which was due to a GF bread I bought that contained psyllium husks. I have found in the past few years that I have MANY food intolerances that were probably masked by the overall Celiac stuff. I also have a very hard time tolerating fiber now. The only grains my digestive tract seems to tolerate well are rice and corn. Oats (even GF) will cramp me up like crazy. So, the next time you get cramping, pay very close attention to what you’ve eaten in the past 24 hours. You may not see it now, but there may be a pattern there. My intolerance for potato took me many months to figure out…seemed like such an innocent food. 😉
Also, hair loss…I had that problem, too. Had really thick hair as a kid, and then in my early teens it just started coming out, and in my 20s it got worse. When I’d wash my hair, I’d end up with what seemed like handfuls of it coming out, and a totally clogged drain. Every time. After I went GF, it stopped, but it took several months. And no, my hair did not come back to its previous thickness. It is definitely healthier (has shine, doesn’t break off when I brush it, can tolerate being bleached or dyed), so that’s something. Check the products you’re using. I was shocked to find my beloved shampoo had wheat in it, so I stopped using shampoo altogether because even topical wheat seemed to irritate my skin.
Anyway, sorry for the long comment. 🙂
amy
Good point, Any!! 🙂
Other food intolerances are quite common in us and many people think
they are getting glutened when it is something else. Dairy, soy, aged cheeses–these are often culprits. High histamine foods are a problem for me and “Gotta Ski” (who often posts here) and will cause symptoms similar to those from a glutening.
And it also kept my hair from coming back in as thick as I would like it to be. (when I was very ill, it was so thin and patchy, I cried) Bald does not so look good on women, IMHO. 🙁
I have had to tweak my diet so many times and I know it can be very frustrating.
Another thought to throw out to everyone: if you continue to have hair loss, fatigue and muscle pain, ask your doc for a thyroid panel. It could be thyroiditis, a common condition associated with celiac.
good advice guys, thanks! i think im going to try keeping a food log to see if i have any other food triggers. i had a dairy allergy as a kid, but i was retested when i got to my teens and my doctor said i no longer have it…maybe i still do? Also im probably going to look into getting my thyroid checked as my energy level is so low and i have to set my alarm if i want to wake up before noon. bleh. thanks for the responses it’s helped a bunch! also good to know im not alone in the cramping and hair loss region!
-Lindsey
Lindsey, I was 52 when I finally went gluten free. My hair grew back THICKER than it has EVER BEEN…. That was 14 years ago!
Now I occasionally eat gluten and pay for it with bloating and gas.
Congrats for 1 yr. gluten free!!
Hi Margaret. Do you have celiac disease? Not judging you…just wondering because you say you still eat gluten occasionally.
hi margaret,
good to hear some good news about hair regrowth! my hair has started growing faster, but not thicker. i miss my dense head of hair! i’m with glutendude in wondering if you are celiac because you say you eat gluten. im really sensitive so i’m usually left bed ridden for a few days so i get nervous even being around it. it’s different strokes for different folks though! thanks for the congrats! 🙂
I am 51 now and went gluten free when I was 40. My hair also came back thick and full. This happened between 6mos and a year I think.
Hi Lindsey,
As for your quick question about hair loss… I was experiencing the same thing while I was consuming gluten, not knowing that I`m sensitive to it. For years…. My hair was horrendously weak and my scalp was completely visible, among all other ugly symptoms. A painful thing for a girl. After going off gluten, my hair thickened considerably in about 3 months, completely hiding my scalp. What a joy! But… If I`m accidentally glutened, my hair falls like autumn leaves and I`m almost back at the start. So just be very careful what you ingest and you should probably see at least some progress.
Same for the vision blurring, I don`t need my glasses when I`m not glutened.
Good luck, be persistent and stay strong!
Yes!! Like being stabbed w a knife repeatedly & sometimes for hours. Seems to be at night when I’m trying to sleep the most
If you haven’t already perhaps best to use a gluten free shampoo and conditioner . The kind with the gluten free seal in it.. Then again maybe you are allergic to some of the other ingredients in your products.
Like it! Thanks, GD.
Thanks for the information Gluten Dude.
IMO with all of these symptoms, you can’t see the forest for the trees or you can’t see the primary symptoms for all the other symptoms.
Again IMHO most of the symptoms listed are a side affect of the lack of absorption of vitamins.
This means you have been Celiac for a fairly long time, missed the early symptoms of Celiac disease and are now suffering from the secondary symptoms due to the lack of vitamins being absorbed.
I think it would be better to highlight the primary symptom of Celiac. “DIARRHEA” and upset stomach.
FWIW I was diagnosed almost 35 years ago. Was really sick for some undetermined reason. After my blood was monitored by a doctor. My Folic Acid never got back to normal. It a year before I had my Celiac confirmed by a Small Bowel biopsy. They had asked if I suffered from diarrhea. I think I said nothing unusual. But I remember avoiding eating Pizza and Beer lunches as it didn’t agree with my stomach aka I would get Diarrhea.
My aunt would most likely have passed away if my parents had not diagnosed as Celiac from my primary symptoms of you guessed it Diarrhea.
Hi Walter. I listed what was presented to me. And for what it’s worth, I did not suffer from diarrhea so I would not say it’s the most common symptom. I did the best I could.
Diarrhea was my biggest problem….along with enough gas to clear a room. Undigested fat smells disgusting! I no longer went out in the world. My husband took our kids to the doctor and did most of the grocery shopping. I was housebound because I had become so socially unacceptable. I just figured I was crazy or something.
The malnutrition caused me to be deficient in all fat soluble vitamins…especially A and D….all B vitamins…folic acid..iron. All my electrolytes were dangerously low…very low cholesterol indicating starvation…Virtually every symptom I had was from malnutrition and abdominal cramping!
I had no sinus troubles..no asthma…no brain fog (had never heard of that one until I discovered forums) Not really any headaches…I was tired, but absolutely could not sleep…still can’t sleep if my digestion is messed up….
I did have a lot of emotional symptoms. Anxiety…fear of being alone…fear of dying ( my heart felt like it was stopping sometimes) crying…shaking…panic…sometimes my blood sugar was way too low…down in the 40s…..racing heart ( most likely from low blood sugar and electrolytes)
In the hospital, the pharmacist made up special IVs for me to replenish all the nutrients I was needing so badly. In all honesty…diarrhea and malnutrition were destroying me…
Sorry Dude…I don’t think your chart is all that accurate….a lot of the symptoms you have there just don’t apply…although a few are spot on.
Hi Galaway…why would you say it’s not accurate? I too did not have many of the symptoms on the chart, but many others did. Celiac affects so much of the body and mind that naturally the symptoms will vary person to person. It does not necessarily means it’s inaccurate though.
GD is right. I was diagnosed after developing diarrhoea, but this was a full THIRTY YEARS after the onset of other symptoms which have disappeared since going GF, and my doctor now says were related to undiagnosed CD.
When I was a child, CD was only considered as a possible diagnosis if a child developed severe gastric symptoms by the age of 2. I distinctly remember my Mum taking me to the doctor aged about 8, when my cousin (then a toddler) had just been diagnosed with CD, and the doctor told her it was impossible for me to have CD. And that was that, until I turned into a classic case.
In the meantime, I have been backwards and forwards with various nutritional deficiencies (I think the doctor maybe thought I was lying about the quality of my diet) joint problems, lack of energy, PMS etc etc. I’m sure he thought I was suffering with a bad case of hypochondria.
It’s for this reason that if someone has a number of symptoms that do not seem obviously connected, then maybe CD should be considered as a possible cause, and far earlier in the process than was the case in the 1970’s, when CD was considered a rare disease, only affecting babies and toddlers, and most with the disease would grow out of it by adulthood.
WoW that’s something my dermatologist order folic acid prescription for me . I didn’t understand since no other doctor mentioned that I be on folic acid . I haven’t picked up the script yet cause I wanted to ask her more questions but you answered them for me . Thank you for your knowledge . I gravely appreciate the info. I’m glad I came across this site . It helps to be able to talk to others that understand .
Right on Gluten Dude! What an awesome tool. Nothing brings better awareness (and understanding) than the format you created. Visual appealing, easy to read, with symptoms easily understood and listed. Not only will this help those not diagnosed yet, but it also helps explain to others (who are not celiac) the importance and why we must stay gluten free. I’ve said it before, but thanks for sharing your thoughts, information, being so damn entertaining and for creating a little community. Cheers!
Thanks Erik. Much obliged.
I know something is wrong food related and have had my sugar checked often and it was fine but Immediately after I eat my head feels horrible. I get dizzy, nauseous, irritable and just miserable. I don’t ever have the actual intestinal or reflux issues though. The nausea is from the feeling in my head.
Does this sound like celiac even though I don’t have the traditional intestinal issues?
Could be–or it could be non celiac gluten intolerance.
Not everyone with celiac has intestinal issues. This is a mistaken belief.
It’s called “silent celiac” when there is an absence of overt gastro symptoms.
My friend Brenda had no gastro issues whatsoever and was damn surprised to find out she even had celiac disease. She was tested (because her sister was diagnosed with it) and she learned she had total villous atrophy. She had what are called extra-intestinal symptoms (infertility, miscarriages, bone and joint pain, muscle weakness, insomnia, headaches) and never knew they were related to celiac.
Celiac is not always “skinny people with diarrhea”. That happens very often with malabsoprtion, yes.(my very ample body deteriorated to that as well, but I was once overweight)…. and some celiacs have chronic constipation, or alternating bowels and are told they have “IBS”.
If you have a collection of symptoms that is “inexplicable”, and there is nothing showing up on testing at all, get tested for celiac –and even if the tests are negative, consider a gluten free diet to see if it helps resolve these issues.
IMHO, of course.
I don’t have many digestive problems ever really. I’m pretty regular. I don’t get constipation. That is what is confusing. I guess I will need to get tested. Will a regular doc test or do I need to go to a specialist? Is it just a blood test?
The following is usually considered to be a complete celiac panel:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA
The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgG versions of the tests need to be run also.
Your primary care doc can order it.
If it is positive, he may refer you to a GI doctor for a biopsy.
Why a biopsy?
Celiac causes damage to the villi in the small intestine.
A biopsy of the small bowel is done if blood tests are positive.
You may wish to read about more about celiac disease and the diagnostic criteria here:
http://www.celiaccenter.org/faq.asp#blood
Irish…did you have a positive tTg, EMA and small bowel biopsy?
Cd has allergic reactions to the bad sugar sugrolose
Ooooo I like it!
I am another vomiter, usually hits right before the D. (If I am lucky, IYNWIM 😮 )
Splendid work as always dude, will pass to doctor friends and leave casually lying about for unreformed family members who might spot one or 17 familiar things.
Great list. Dandruff is listed twice on the infographic.
Rats…great catch PK.
Dry hair before bed and ingredients in hair products could have gluten in it some ingredients in products have gluten that aren’t mentioned they have gluten then maybe allergic to other ingredients in products cd products have there symbol on label
Great list, great visual! Posted to my facebook page. Thank you for doing this. 🙂
I truly believe that Celiac Disease is a real thing that needs to be in people’s awareness (and their Doctor’s!). This chart, and the person responsible for it, however, is the kind of thing that takes away the credibility of Celiac disease and those who have it. Creating a chart by asking 150 people who have Celiac disease if they have any of these symptoms is very unscientific. (Please read “Source” at the bottom of the chart.)
All of those symptoms are as real as it gets. It was not intended to be a “scientific” study. It was a real life with celiac study–as he has stated.
However, all of them–the exact same ones that real celiacs have listed here– are listed in THIS SOURCE as well:
http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
Is the University of Chicago Celiac Disease Center credible enough?
Hi Joan. I’m the person responsible for it. Let me see if I can answer a few of your points.
1) It’s good to know that you acknowledge that celiac disease is real. The celiac community will be glad to know you have their back.
2) I didn’t ask people if they had these specific symptoms. I asked them what their symptoms were and these were the most common.
3) I’m not a scientist. I’m a blogger.
That is all.
i think this chart is more about “hey here are some symptoms people have, so you may want to get tested if you have an undiagnosed medical condition.” it’s a good conversation starter to have with your doctor as many doctors don’t automatically assume celiac in my experience (and a lot of people still don’t know what celiac is). Theres no harm in getting tested, but there is harm in not getting tested when you have celiac and continue to eat gluten cause you are none the wiser.
you don’t generally look to bloggers to give you scientific information. i come here for the camaraderie, and an info graphic like this is comforting that i’m not the lone celiac with some crappy symptoms. that’s how i look at it.
Lindsey, Thank you for your well-reasoned response. It was the most helpful one : )
– Joan
your welcome 🙂
I have co celiac disease . My dr said my family should get tested though the test is expensive and insurance has to have a good reason by dr to pay for it . My children are of age to make that decision my husband is not cd and it’s extremely difficult for him at times he feels offended when I need my own pots and pans and cupboard space . I don’t enjoy eating out . In fact I just started going out to eat usually I eat before we go out or I’ll take food and the restaurant will prepare in my pots and I take my own utensils . I suppose I take my whole kitchen. I couldn’t imagine if I had a house full of people living with me . I’d probably have to put a bungalow in our back yard or a she shed! 🎃
I think the point of an infographic of this type is not to tell health professionals (who do know this stuff, but don’t always think of it when we turn up with vague illnesses) but to inform the general public, who would find medical texts extremely dry. In this context, it’s absolutely fit for purpose, which as I see it is to raise awareness of the more common symptoms, some of which are not obviously gastro-linked, so that someone who recognises their own vague symptoms can go and ask the questions for themselves.
In the UK the NHS uses posters in this style to encourage eligible patients to get jabs, women to attend cancer screening, to think about whether they are drinking too much, to consider giving up smoking. This light and sometimes humorous approach is better received than bald and scary facts. Why would it not work elsewhere in the world?
Thanks – love the picture, so much more interesting than the coeliac UK posters that look like pictures from a Doctors waiting room, and it all rang so true. All the doctors I talked to about suspected gluten intolerance in me and my daughter said that if we did not have diarrhea then we did not have coeliacs disease! Get this picture linked up to an accredited scientific survey and send it out to all GPs!
This chart is AMAZING! It’s the best compilation of symptoms, without being overwhelming, I’ve ever seen. Thank you so much for doing this! I may send this to some friends/family during Celiac Awareness Month in May. By the way, I have 30 of these symptoms. Besides also having other food intolerances (is that a symptom?), low Zinc, and Raynaud’s, I think this accurately captures all my symptoms. I have almost all the behavioral ones.
Yes I have raynaurds . My sister has shrogren and my 1st cousins daughter has crohns. Though that I suppose doesn’t necessarily mean you have celiac disease . I’m the one with the silly orange pumpkin . Didn’t see an emoji pumpkin that was teal .
Thank you for this article, I will be sharing with our readers, many of whom are gluten sensitive. ~Alexis on behalf of everyone at Covenant Ranch Online, proudly delivering organic and whole foods for Azure Standard
Hi I suffer from many of these symptoms and I have had a blood test to see if I have celiac but never a scope. I’ve heard that the blood test is very inaccurate and scope is always better. Anyway the blood test showed negative.
I’m just wondering if it is something I should look in to doing. I’m just wondering if anyone had a similar experience that results in a positive scope. I can say I suffer from about 25 of the symptoms listed.
Hi Kelly,
A full blood count will not necessarily diagnose CD; it might throw up a couple of markers, but not a good diagnosis. For example. I was anaemic, but that was the only thing that came from the FBC.
Luckily, my doctor then did a coeliac screen, which tested about 5 markers – specific antibodies were through the roof, specific nutrients through the floor.
However, even this does not “prove” CD. About 1% of people with positive coeliac bloods do not have CD. And 1% of those with symptoms with negative bloods DO have CD. (This is the reason that a biopsy is almost always required to prove CD in the UK.)
Just to confuse the issue there is a second condition called non-coeliac gluten-intolerance. The pathology is different from CD, but the treatment is identical, so if you have this you may be able to get support from your national coeliac society.
A word of warning – if you are going to travel the road to prove or disprove CD, you need to be eating gluten in order for the disease to show in your bloods and biopsy. If you go GF before the tests are complete, you are at risk of your results showing a false negative.
I hope you find out what is wrong and feel better soon.
hey Kelly,
My blood test came back negative. i think i had 2 done and never returned positive. my doctor did a scope regardless and it came back positive for celiac. i’ve found that blood tests aren’t super accurate. it’s one of those if it comes back positive then it helps support a celiac diagnosis, but it it comes back negative it could just be a fluke (like me!) biopsy is the best way to diagnose it. have you tried getting the gene test? not sure what it’s called, but it tests to see if you have the celiac gene (most people do). if you have it, it doesn’t mean you have celiac you just carry the gene for it. however if you don’t have it then it is much less likely that you have celiac. i always recommend a scope if you are unsure. not sure if this wording is confusing. hope i helped.
-Lindsey
That’s right . Go with your gut feeling. If your doctor approves to test you for celiac in another wayI was tested when admitted to hospital that was in a trauma center I was very sick . I had an excellent dr and a neurologist who wanted to do a spinal tap at that time I refused a spinal tap but beings I couldn’t raise my arms neurologist wanted to find out why ? The following day I raised them up but he still wanted a spinal tap on me. When I moved to pa the gasterologist just do blood tests which come up positive for me . I have a very sensitive stomach with a very thin abdominal wall . Some doctors by pass celiac as just a diet restriction to gluten except there’s more to it then that . Though being a patent the doctor wants to be the one to say . Like my father said listen to your dr they go to school for many years to study . If you don’t see eye to eye move on to another doctor till you find that special doctor that loves there career and enjoys being there for there patients .
I would be very interested to know if the people who contributed to your list of symptoms are blood and biopsy diagnosed celiacs…non celiac gluten sensitive…or self diagnosed.
Why? Are you saying that people who didn’t get the benefit of a diagnosis shouldn’t be taken as seriously?
You seem to have an agenda that can’t quite figure out.
Dude …I just think celiacs and non celiac gluten sensitives more than likely have different symptoms. They don’t have the same intestinal damage or the same type of immune response so I think it is reasonable to assume they could have different symptoms too….
Well…I suppose you could say my agenda is putting out the most accurate scientific data possible. To do anything else is irresponsible. Kind of like when the media gets it wrong and you all groan and call it irresponsible journalism. Do it right or don’t do it all all. Technecally, you need 3 separate charts to cover all 3 distinct issues.
Not really.
His goal was to make a list of symptoms that real live celiacs have suffered. (see the previous blog post where celiacs answered him)
He put together an informative list of those symptoms compiled from responses from those celiacs.
The symptoms listed here correspond exactly with the list of symptoms published by a leading celiac research center.
I posted that list above. (check it for validity )
Is it scientific? Not exactly .
But he never said it was.
He said exactly what it was –a survey of 130 celiacs–period..
The celiacs who responded to it found it helpful and relevant.
The many people who posted here with positive thoughts found it helpful.
Not really sure why you and Joan object to it. And BTW, Joan, he did not ask anyone “if they have these symptoms”…people with celiac voluntarily posted their symptoms and these are the ones most commonly reported.
Not real sure why the dude needs you to speak for him. He can do it…Take a break Irish…I didn’t ask for your input…yet you seem compelled to butt in every chance you get. Why is that? This isn’t your blog…it isn’t your problem.
The Dude wants this very unscientific chart posted in as many places as possible. That, my friend, is irresponsible. Although, I’m sure his heart is in the right place. Leave the charts and symptoms to the experts. He needs to stay out of the science of it simply because he isn’t qualified. There is already way too much misinformation on the net and in the media! For goodness sake, a lot of people don’t know how to spell or even say celiac…yet there they are with a microphone in their hands and a deer in the headlights look on their faces on our televisions and computers. I swear there a a whole heck of a lot of people who don’t really understand what gluten is or why they aren’t eating it!
Let’s put this to rest Galway.
Irish is a huge part of our community, we communicate frequently outside of this blog, she is one of the most knowledgeable celiacs out there and she uses that knowledge to help countless others.
As far as leaving the charts to the “experts”, who should we leave it to? The medical community that has misdiagnosed this disease for decades? The celebs who see it as a fad diet? The authors who are trying to peddle their books.
I think somebody living with the disease is exactly the right person to do this.
Moving on…
Always a pleasure chatting with you too, Galway. 🙂
And here I just told you the other day that I found your honesty “refreshing”.
I think it’s more helpful to educate rather than attack and argue with people. It’s how I make sense of what happened to me. Anything I say is offered with good intentions and backed by research, and for the most part, no one seems to have a problem with my “input”.
You cannot seem to discuss a topic without personally attacking someone. That’s a shame and I am not sure where all your anger comes from, but I hope, for your sake, you can let go of it. Stress is not good for people with autoimmune disease.
I wish you well, I really do. Take care.
You know what really annoys me to no end? Celiac snobs. We appear to have 2 here. I am a bonifide, diagnosed Celiac yet I always encourage those who think they may have a problem to, either try for a diagnosis (and we know how hard that can be) or to do a dietary trial if they are being brushed off by the so called experts in the field. Another issue with me is that it’s about time the researchers started talking to more Celiacs about their symptoms so they would actually learn something, instead of carrying on the tradition of only accepting what they see from their limited perspective. I work in research and research can be easily manipulated to get the desired results. Only when doctors include diagnosed Celiacs and those suffering from NCGI or NCGS will they ever truly understand what this diseases entails.
It really is a spectrum disease.
What we don’t need are those who look their noses down at others who are suffering as much as those who have an official diagnosis. BTW…..there are many, many doctors who rightfully diagnose based on blood work only….the Gold Standard is not always necessary.
It was a really good graphic with real symptoms from real people.
There was no misinformation on it at all so maybe the 2 dissenters need to educate themselves a bit better on Celiac Disease.
Many thanks Gemini! I don’t quite understand the push back either but I suppose that’s what makes the world go round.
Thats a lot of thinking ! WOW ! If you aren’t happy with your doctor then fire him and go to another doctor and keep looking till you find an experience celiac doctor that understands what your talking about. What is sensitive to gluten mean anyways your either celiac or not . Thats how is look at it. Gluten in bread but not allergic to wheat that’s an example . I’m extremely sensitive . I have to get upper and lower gi testing there’s lots of tests it’s finding that well educated. Doctor that knows a lot and doesn’t use others to do research on for themselves on the patents expense. Sorry didn’t mean to be disrespectful just that I’ve been to a lot of doctors in my days . If I don’t have a sharp minded doctor off the top then forget it. Maybe you have to go to a different state to get the right connection. I don’t know. States have different laws to abide by . That’s what I was told .
Love the infographic!! It sums up everything :).
Well done GD.
Thank you Keratee…
My nephew has been diagnosed, and he is completely gluten free. The doctors, and he has seen many, have tried everything. They cannot stop his vomiting. It may last a day or two, or a couple of weeks. His stomach also hurts so bad he has to stay in bed. He would be a junior in high school, but he cannot attend regularly enough for the school board to allow him to stay. It hurts us all so much to see him miss out on everything he loves, not just certain foods..Every other possibility has been looked into to see if he could have more than Celiac.. Have you ever heard of this??? We are all upset, but he just takes it without complaint.
Good Morning!
I love the new info-graphic. I am one of the many with celiac disease that would have greatly benefited from such information circulating within general population as well as our medical community. Having gone undiagnosed for over 40 years — I would have loved to run into this graphic in my early 20s.
I regularly provide info to those with questions about autoimmune disorders — I have forwarded the list of 300 symptoms associated with Celiac Disease from the University of Chicago often over the past few years to many folks with questions (including doctors that had no real world knowledge of Celiac) — I am now using this graphic along with a link to the UOC list — this graphic is far easier to read and quite frankly a bit more fun — personally I think we all need to smile as much as possible — as it takes many more muscles to frown and I need every bit of muscle activity to be used for good.
Well done Gluten Dude and Community : )
PS….read thru a few of the other posts and I too am saddened by the judgmental tone of some of these posts.
While I happen to be diagnosed by blood, genes and biopsy — my children (all with multiple yet different symptoms) were not yet throwing antibodies – except one elevated DGP-IgA. Given that I had mysterious health issues and flares my entire life — they each made the decision to remove gluten after testing was complete. All of them along with two grand children have had major improvement to serious health issues — are they Celiac or NCGI — does it really matter????
They cannot ingest gluten or moderate health issues will become serious and then multiple systems will be adversely affected — maybe once their small intestine has been destroyed they’ll throw Celiac antibodies, but thankfully they have chosen to not chase an official diagnosis.
Oh – the oldest does have an official stamp on her Celiac Card – she got it from the positive DGP-IgG along with symptoms from her other 5 AIs improving with the removal of gluten plus I’m Double DQ2 — so she has at least one copy.
Diagnosis is not perfect — far from it — my teens have decided they will wait for the test that puts a small intestine sample into a petri dish with gluten rather than experimenting within their body.
I very much enjoyed Jess’s post — Thank you : )
There is a small minority that seems to think if you do not have celiac disease, you should not be lumped in with those that do have it.
I’ve stated over and over again that this site and the community is all about people who need to give up gluten for health reasons, diagnosed or not.
I try to straighten out the folks who think differently.
and we enlightened ones will continue to help you do that, Dude. I promise. 🙂
Yep : )
Excellent. HOWEVER, tooth enamel erosion? I asked my dentist about my “fuzzy teeth” and he assured me the enamel was intact. He speculated that it’s some chemical change systemically (which we have when we’re exposed) that secretes through the salivary glands. That’s my personal experience anyway…maybe others have indeed lost tooth enamel.
Yep…it was mentioned by more than just a few people.
Yes, sadly, many of have dental enamel defects. Lots of Pub med articles on this topic, if you want to read them (and give them to your dentist). I gave some to mine and he was pretty surprised by it.
If dentists were more aware of this connection, they could see it in children, too and diagnosis could be made early..
“The present study clearly shows that symmetrically and chronologically distributed enamel defects are strongly associated with CD. Therefore in the absence of symptoms and signs of malabsorption dentists could easily select the right patients possibly suffering from CD for gastroenterologic consultations”
http://www.ncbi.nlm.nih.gov/pubmed/2401959
http://celiac.nih.gov/DentalEnamel.aspx
“Enamel defects are common among patients with celiac disease. They tend to be bilateral and symmetrical, and they are chronologically distributed. The lesions affect mainly the incisors and the molars. Patients with such characteristics should be evaluated for possible celiac disease”.
http://www.ncbi.nlm.nih.gov/pubmed/9431534
Lots more–check Pub Med
Thank you. I will take these articles to my dentist. Best regards.
A few things to remember about Celiac Disease:
1. It is possible to be diagnosed with Celiac Disease without a small bowel biopsy. There have been an increasing number of papers published, as recently as last week, suggesting that if a patient has symptoms of Celiac Disease, a family history, HLA DQ2 and/or DQ8, and elevated Celiac antibodies, that a biopsy is not needed. Plus, a significant number of biopsies are done incorrectly (not enough samples are taken to be histologically evaluated, and/or the duodenal bulb is not biopsied). There are a ton of Celiacs who are undiagnosed due to their biopsies being done incorrectly (or believe that they have NCGS because they know that they get ill from gluten but their actual diagnosis of Celiac Disease was missed due to their poorly done biopsies).
2. The symptoms of Celiac Disease can be totally different from person to person. Although a lot of people do have abdominal pain, cramping, diarrhea, and weight loss, not all do. For some patients with Celiac Disease the only symptoms are neurologic, i.e. nerve pain, ataxia, or seizures. For some women the only symptom is infertility. For some Celiacs it is totally silent.
3. A lot of doctors do not know much about Celiac Disease. I am a physician and am on two MD-only medical forums, in which the only way to gain access is to have your medical license # verified. There is an appalling lack of awareness of the presenting symptoms of Celiac Disease in the medical community. And some MDs continue to believe that it can be outgrown, and/or patients need to cut back on gluten, but that it is okay to eat a little bit.
4. A lot of our medical information is obtained from the internet (for both good and bad). One of the best papers that I have come across about NCGS is a case report in the BMJ (a peer reviewed journal) last fall in which a PhD self-diagnoses himself with gluten sensitivity after finding information on the internet. His physician wrote up his story and it was published due to the fact that there is so little about NCGS in the medical literature, to increase awareness.
The main symptoms of Celiac Disease, which Gluten Dude obtained on his random sampling of 130+ patients with Celiac Disease, match up almost amazingly well with the symptoms which have been published in the medical literature (see Irish Heart’s link to the Univ of Chicago Celiac Ctr).
Instead of supporting each other, I find that we in the Celiac community are continually attacking each other, which is such a shame. I can’t imagine that the same would happen with other diseases, i.e. that one diabetic would doubt that someone else has diabetes because their blood sugar is not high enough or they haven’t developed enough complications, like kidney or vascular disease. Or that someone with lupus would doubt that another patient has lupus because they do not have a prominent enough facial rash. Or perhaps, sadly, it does….
Wish we had Like buttons! Like Like Like! 🙂
“And some MDs continue to believe that it can be outgrown, and/or patients need to cut back on gluten, but that it is okay to eat a little bit.”
Holy moly that scares me!
Thanks so much for your comment Jess. If there is anything I can do to help educate the medical community, by all means just let me know and I’m on it.
Your words i must say come from a very compassionate heart and right on . I apologize my texting isn’t to good . I just had ulnar surgery on my dominent arm . Good night 😴
Dr. Jess….I love you! We are depending on you to educate your peers in medicine on Celiac Disease. No other disease requires so many hoops to jump through to obtain a diagnosis and that is just so wrong. Not to mention those who attack others who suffer so much and are being misdiagnosed. Thanks for posting…you rock!
BTW….I did not have a biopsy….I declined it. I was a poster child for classic Celiac, have a double DQ2 gene and my blood work was off the charts on 4 out of the 5 tests on the panel AND some of my symptoms started to abate within days of starting the gf diet. If that doesn’t convince the medical world, I give up!
I have a lot of these symptoms. I went to the doctor and had a positive ANA (low titre) and positive DS DNA, so he is thinking SLE or UDCT, but after going gluten free for almost a month and my symptoms pretty much going away, I’m wondering if it is celiacs. Has anyone with celiacs had a positive DS DNA test?
Hi Marie-
My daughter was diagnosed with SLE, RA, Fibromyalgia, Mixed Connective Tissue and Sjogren’s Syndrome all before I was finally diagnosed with Celiac Disease. She has now added Celiac Disease to her list of AIs — many with autoimmune disorders have more than one. Another quite common one is Hashimotos Thyroiditis.
I can only speak for my daughter and myself — many of our AI symptoms have improved with our years gluten free — others are proving a bit more of a challenge.
How long have you been gluten free? Removing gluten before having complete celiac antibody panel can make the tests far less accurate. That being said — it is still prudent to get tested — let us know more of your story — lots of folks willing to help around here : )
Thanks! Here’s my story. About 2 years ago, when my youngest was around a year or so, I started getting really tired, to the point that I never woke up feeling refreshed. I went to the doctor and they found that my Vit D and B12 were low. I got them up and felt better, but would still have episodes of exhaustion and also achy feelings in my wrists and elbows. I went back to the doctor and she ran some more tests and saw that I had an elevated ANA and referred my to a rheumatologist. I felt better and she did some more tests and everything came back normal. About 6 months later, I started back to work at a new job and was training for a marathon. My fatigue and achy feelings got so bad that I had to stop my training. I went to a new doctor who was skeptical that anything was wrong with me, particularly since I was so active, but I just pushed through the fatigue. With 2 little kids, I have no choice. He was leaning toward fibromyalgia. He did some more tests and my DS DNA came back elevated. He said that my symptoms weren’t consistent with Lupus and even when I came in, was skeptical that I had Lupus. He says that it is probably Undifferentiated Connective Tissue Disease. After doing some research about the connection between gluten and inflammation, I went gluten free. (My doc doesn’t believe me). I have felt like a new person. My energy is up and the achy joints are pretty much gone. I had some other symptoms that have seemed to resolve as well. I had a small amount of wheat and had a big flare up. With my doctor’s skepticism about Lupus, I am wondering if it is Celiacs, although most of what I read is that a positive DS DNA test is almost definitive for Lupus.
If it is SLE – this does not exclude Celiac Disease and vice-versa.
You should be tested with a full Celiac Disease Antibody Panel — The problem here is you have already removed gluten which can make the tests inaccurate as the tests measure antibodies created in reaction to ingesting gluten.
How long have you been gf?
Wow… this describes me so accurately that it’s disturbing. The only thing is, I have visited medical clinics dozens of times for unexplained problems (fatigue, depression, menstrual cycle problems, chronic back pain, skin problems, anxiety, insomnia, multiple food and animal allergies, and so on) and not one of them ever took me seriously. I got a few blood tests done to check my iron levels and liver enzymes, everything came back normal. They prescribed be a BCP to Band-Aid my cycle problems and 10 days of Naprosyn. I swear I thought everything was wrong with me, until I started doing some research on asthma for a writing assignment and BAM. Here it was before my eyes: the link between gluten and inflammatory diseases and holy cow, my life has changed since. GF for 2 weeks and I finally see the light.
It utterly amazes me how little the medical community knows about this. I am a RN. I am shocked at the fact that I had never even heard about CD before, and gluten sensitivity was only a vague concept in my mind, the kind of stuff that happens to others. The kind of stuff that certainly can’t happen to me. I am healthy, doctors keep telling me you can’t get any healthier than that. Gluten intolerance was “diarrhea and stuff” in my mind. It never crossed my mind that all my non-GI issues fit perfectly into the description of gluten intolerance. My dentist was amazed at how a 27-year old woman could have literally chewed through 50% of her teeth. I figured I had soft enamel, but it secretly terrified me that something was very wrong. I had no idea it could be linked to CD…
I strongly support the actions of people who are trying to raise awareness. I live in a small town and I am terrified of eating anywhere but home. Even non-affected people need to realize that this is real. I did not visit the clinic all those times out of paranoia. When you have a dozen debilitating unexplained symptoms, normal blood tests mean nothing. They need to dig further. I probably will never get back on gluten to go through the tests and biopsy. I have all the proof I need.
Thank you for sharing your experience.
I want to clarify that I do not discourage testing, actually it is quite the opposite. However, at the time that I stumbled upon the info by accident, I was so overwhelmed by the perspective of possibly having found the source of all my problems that I immediately went out and changed to GF. The same night. I did research on the subject afterwards, and realized I should have gotten tested before. It’s too late now, I am feeling so much better that I don’t think I want to go back on gluten just for an official diagnostic (unless of course there is a distinct advantage that I am not aware of, being new to all this). I have read that restarting gluten for someone who did GF for a while can be especially hard. Just the fact that I wake up feeling like I actually slept makes me feel unbelievably better and motivates me to keep this diet for as long as I need it (probably life, who am I kidding.) I had not had a restful night of sleep in 15 years.
TLDR; Get tested before you give up gluten!
Thanks for this compilation! It’s amazing how uninformed the medical community is about CD…sad actually. I think the problem in American medicine is that they just treat the symptoms and don’t look at the body as one functioning entity. I have been treated for various forms of dermatitis, IBS, mood disorders, anemia, sinusitis, & infertility just to name a few of the major issues. The best day of my life was when my doc told me I was off-the-charts with my CD panel (which I demanded she do after running across a list similar to the one you shared). My CD has been active for at least 20 years and not a single “specialist” thought to test me for something that was outside their box of diagnoses. After I got diagnosed, I began educating people about the disease and within 5 months, 3 of my friends/family have been tested and positively diagnosed. Education is key! Thanks for what you do GlutenDude
Hi Gluten Dude,
This is Infographic is Amazing. I haven’t had a chance (or the energy) to post any comments in awhile – but I still read all your blog posts. Just wanted to take a time out to send you a little bit of gratitude: http://pinterest.com/pin/105130972521722429/
Love it…thanks Steph.
Oh, and thanks for overlooking the occasional grammatical error too 🙂 – sometimes “Celiac Brain” rears its ugly head…
One more funny: http://pinterest.com/pin/426927239646206675/
Shared, reposted and spreading awareness 😉
Wow this is great.
I counted that I have had 40+ symptoms before going GF (16 months ago after seeing a natropath, when modern med struggled to give me answers). I have suffered these all my life but it came to a head when my depression, pain, exhaustion, anxiety had me so immobile that I almost lost my life to Pulmonary Embolism almost 2 years ago. While this is not a symptom listed, I feel it was the end result of everything listed above..after many many blood tests (although I honestly don’t know if CD was ever in the hundreds of tests I had after getting sick) nothing was concrete ONLY that I have an inflammatory marker for an auto immune disease….??? Anyway my point is the longer I am away from gluten the more I feel I am reacting to it..
See I initially thought it was a wheat intolerance.. As wheat has me with migraines, bloating, swelling, nausea, pain in joints and muscles, concentration issues and so many more, sometimes all, sometimes a few, but I am usually sick for days if wheat has snuck into my diet. (I dont know how I managed to survive for 35 years..pushing through a depression that was fueled by an allergy..its no wonder exhaustion is a symptom- FYI I have been off anti-d’s since being GF, something I had taken since my youth.) Anyway back on track….wheat allergy….I ‘thought’ I could tolerate small amounts of gluten….but as I said the longer its out of my diet the more I am noticing the milder symptoms which are growing again as I still have spelt bread, Wheat free muesli etc etc etc… Mild anxiety, muscle and jint pain, sleeping issues, it just goes on and on..
(I am getting to my point..haha) MY POINT IS……how much gluten do we need to be having for the tests to be effective? I honestly think I need to be tested (and after reading this my husband is forcing me to be tested), as I am now only having small amounts of gluten (but ZERO wheat) The actual test is for GLUTEN only yes? Not wheat? I hope I havnt asked questions out of your league… With all due respect (Jess and other medical prof), my faith in the medical profession dwindled after being ill. So sick but no one would tell me why. After years of research I ‘think’ this may be it, but I dont want to have my diet hinder the results and go on living with an allergy that will shorten my life.. *sigh* I am so sorry to write a novel.
One thing I have taken out of my illnesses is a very positive attitude towards life. Reading this is wonderful and so informative and I have spread the word on my FB account. I have printed out the CDC info sheet from the UOC as back up for my GP if I am met with walls.. Thanks for posting this Gluten dude!! You have helped this very indecisive person take the leap in a proper diagnosis.. Cheers..
Kelpie…a year after my celiac diagnosis, I too almost died from a pulmonary embolism. So while it may not be a “symptom”, it doesn’t mean it might not be related.
Well there you go gluten dude. Makes me wonder how many others that haven’t had a pe. Interesting. Thankyou for your reply.
*have had
I think it’s ok he insurance companies that control the say of what doctors do just my opinion though I have nothing against my insurance companies . I suppose communicating with h insurance companies and doctors and billing so everyone is in n the same page and codes are processed correctly I’m sure insurance companies would ok do what they can to help insurers
as a foot note..I am not syaing that a blood clot is a symptom of CD by any means, I am just telling my story and my experience with this very confusing and hard to diagnose disease. 🙂
Hi Kelpie!
You cannot eat spelt or “wheat free” cross contaminated foods that may also have rye or barley in them because you are still ingesting gluten and that is why you are still sick with symptoms.
I do not think your problem is just a wheat allergy, but a gluten intolerance of some kind and quite possibly, you may be a celiac. No, I am not a doctor, but I have seen enough of this for the last 2.5 years to “know a duck” when I see one quacking. 😉
This is why it is difficult when naturopaths or others with good intentions tell someone “just give up wheat” when they have not done any testing.
Gluten is the protein in wheat, rye and barley, so yes, the celiac panel tests for antibodies that are made against gluten. A wheat allergy is an entirely different mechanism.
From the Univ. of Chicago CDC:
“A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.
Prior to blood testing we recommend 12 weeks of eating gluten.
Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.
In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy”
Many people cannot last that long, so they give up .
The medical profession needs to change the “rules” about obtaining a proper celiac DX, IMHO, but this is what is available right now.
A positive celiac panel or not, either way, looks like you need to dump all gluten sources, IMHO.
IMHO, of course. Best wishes!
Quack 😉 lol.. seriously though Thankyou. I know how well i felt at the start of the natro diet when I was completely gf. Now as I have reintroduced spelt etc, yeah things are just going down hill again. I am off to the gp armed with this info and want to thank you all.. Although 12 weeks makes me want to curl up and cry, I could maybe convince him for a biopsy first. Time will tell. Thanks again.
(Sorry for typos I am on my phone)
Something you might mention if you do further posts on Celiac is that it’s important to get tested BEFORE you change your diet. If you clear all the gluten from your system you will test negative for Celiac disease. And there are other conditions that could be at fault, so a positive diagnosis is important.
Since a child I suffered with Vertigo. Now having been on a proper diet for 2 years, no more vertigo~! I never, NEVER would have made the connection. I am sitting here smiling at the realization that I have not been dizzy in all this time. THANK-U for posting the picture with ALL the symptoms. It does make it easier for someone to grasp-they are NOT crazy- and that they can help themselves w/o a Doctors help, since many Doctors do not have a clue and will test for everything under the sun except C.D..
Thanks Lissa. I’ve had some people tell me, and I quote, “the graphic is crap” because I listed so many symptoms and I should leave this stuff up to the medical community.
Now that’s funny 🙂
Great infographic, though ideally I would love to see one with a bigger group of people interviewed and only containing stuff that at least 5 or more said. My mother was only diagnosed in her mid-40s when she had to be hospitalized for “unexplained” weight loss and other symptoms, needed a blood transfusion and had a vitamin k deficiency. This is despite the fact that her mother had celiac disease and she had “classic” abdominal problems and even suggested it to doctors who dismissed it. This was 30 years ago in NY and I truly hope doctors are better informed now. I feel like it is better known in Australia where I live now. There are lots of gluten free foods in shops and a number of restaurants offer GF choices as well.
Just have to be careful cross contamination ntamination
Cannot tell you how wonderful this list is, for the last upteen years I have been diagnosed with IBS, Crones, Colitis and treated for all. It was not until recently when a lump was found on my thyroid and the dr’s started paying closer attention to my thyroid and thus my many many other symptoms that Celiac Disease finally came up and believe me it was like an answered prayer.
Dear GlutenDude,
Yesterday a friend of mine shared this post on FB. As I purused the list and I was shocked…several of my own issues are on here. Sure, there are potential crossovers with other diseases, but about two months ago I was diagnosed with nighttime reflux. I am 41 years old and am not overweight, if anything I seem to be losing weight lately and I am already 125! So, I am on meds an cutting back on the trigger foods but last week I noticed some new symptoms mainly with my stomach. I have been really tired and thinking that my thyroid meds were a bit off but that bloodwork came back normal last week. Now, back to your chart/list…these symptoms are on here as well as others I have had for the last few years…point being, I think I am making an appointment with my doctor. Too many new things going on and too many coincidences on your chart!
This is my long winded way of saying thanks. Now I have a possible reason for my issues that ties them up in a neat little package. Probably not that simple, but I have enough of an eyebrow raise to call my doctor.
Laura
Glad it helped, Laura. Good luck to you.
Great graphic. There should be posters of it in every hospital.
Exactly what kind of back pain are we talking about here? The reason I’m asking is that I’ve been having a lot of these symptoms for a while and I’m determined to get tested soon. I also found out that I have a family history of small intestinal cancer, so I’m pretty scared now. Anyway, I’m 20 years old, and when I was 16 I started getting occasional pain in my upper back, around my shoulder blades. Usually just on the right side, but sometimes both and sometimes it would spread around to my sides and front ribs. It’s a different kind of pain than I ever felt before, and I’ve only felt it in that area. Not muscle pain, not a normal back ache. It honestly just feels like someone sawing at my bones. About nine months ago it became more frequent, happening almost every day. I noticed a pattern; it usually happened about 1-2 hours after eating. It would last several hours and it was so bad that I couldn’t do anything except lay down, and it made me sick to my stomach. My doctor thought it was gallstones but an ultrasound showed nothing unusual. Then suddenly, it stopped. It almost went away, but I still have it occasionally. I’ve been reading about celiac and putting all my symptoms together and it seems likely that I will test positive. I’m wondering if this back pain is also a symptom, or if it’s not related at all?
Allow me to add neuropathy and Reynaud’s. It’s like magic how most of my symptoms have gradually faded in the 7 months since I’ve been gluten free. Thanks for all you do, gluten Dude!
What exactly is Raynaud’s? My mother has been diagnosed with Raynaud’s, but she only has it in one finger. Simple things like picking up a gallon of milk cause her finger to go white and numb. She often has problems writing a check at the grocery store after handling frozen foods. She says she never had it until her 30s, and now one of her sisters has it also. She blames it on getting frostbite as a kid, but could it be related to celiac?
It’s an autoimmune disease so it could certainly be related.
Wondering just how reliable conventional testing is for celiacs, my son has always been a sickly child since 1.5 years, gradually over time his skin has got worse and worse along with his behavior and toile ting issues. However, all cleared up within a month of being gluten and dairy free, (well almost, was getting there). Then he got glutened at a party when I wasn’t looking. Within an hour his mood changed, he fell asleep for over 15 hrs from 4.30pm in the afternoon. When he got up toilet accidents all day and then tonight I notice bruising, flaky skin on face again and spots. Also refused to eat all day. Yet over a year ago negative for celiacs on blood test. Feel bad in a way restricting without conclusive medical evidence but it seems so obvious given celiacs runs in the family (grandad and cousin medically diagnosed) and I myself can’t eat gluten nowadays without vomiting despite also testing negative too, but having tons of ulcers stomach and mouth and constant anemia!!! Thinking the tests suck.
Love the infographic! So much that I posted it on our US and Canadian websites under our Celiac Education pages. Sometimes a list is too much and a visual is so much easier to understand. Thanks for making this available to share.
Thank you for the great infographic! I’ve posted in on my site for my members to enjoy.
I’m always a little cautious of these lists of symptoms and I tell people that these lists can be overwhelming. It seems that there are so many different symptoms that everyone could be gluten intolerant.
Thanks again!
I came a across this website as I am looking for information on Celiac -disease symptoms.I am from Sweden but living here now in the US and I know North Europeans are more high risk population when it comes to this disease. I have had eczema all my life with a diagnose Atopic dermatitis since many years.The thing is that since 2007 my hands have become more affected by eczema . I have to use very strong cortisone but now the latest year it do not really help either .6 weeks ago I got a diarrhea ,the diarrhea lasted for 4 weeks .My Doctor have not found anything in my blood tests or stool samples that were taken no acute infection ,no parasites. I have excluded dairy and gluten from my diet since 1 week .I have start to feel so much better .No diarrhea .No problems with my stomach.My eczema have vanished totally and this is the worst time for me otherwise on the year as cold and darkness affects my skin badly. I have not been diagnosed with anything ,but I am going to go to the doctor again and tell about me suspicions .To add further I have also many other signs on your list that fits on me ..early menopause,gum disease. hair loss and many many more..Thank you for this website ,very good information !
Thank you, I just found this page. I have about 90 % of these symptoms, and my old Dr has been telling me for years that I just need to take it easy. Ha ha ha.
I have 21 of these symptoms, think it’s time for me to see a doctor. lol. TWENTY ONE of these symptoms. Maybe if it is this and it gets under control, my life will be much happier.
Good luck to you…
Great site! My sister & I have had so many of these symptoms.
I’m an RN who was told I was too old to have Celiac Disease!
I’m now 60 and have been slowly been going crazy. She was diagnosed just weeks ago and I have an appt. with a gastroenterologist next week. I’m afraid too find out how much damage has been done. Thanks for all your work GD – it was the first site that I’ve visited and I’m very impressed with what you have put together. Thanks again. Going GF.
Much appreciated Linda…
After years of wondering what’s wrong with me, I may have the answer! I have every single one of those symptoms including already diagnosed asthma, ADHD, GERD, iron deficiency anemia, chronic migraine headaches, depression, panic disorder, vision loss and gum disease. I was beginning to think that my health was just going to hell for no reason. Unfortunately, doctors don’t look for zebras when they hear hoof beats. I’m definitely going to mention my many GI symptoms and celiac disease now. Thank you so much for this informative picture! You may have saved my life if I do end up having celiac disease.
Hello Lilly. I could have written this myself. Finally after a lifetime of suffering and being prescribed every psych drug imaginable, I got an accurate diagnosis. I was diagnosed with Celiac disease almost 6 years ago and have been completely gluten free since then. My life has changed in every possible way for the better. No more depression, migraines, muscle pain, anxiety, panic attacks, agoraphobia, crippling intestinal pain, nausea, diareah, constipation, vomitting, etc. etc.
For over 20 years I was dismissed by ALL of my doctors of which I saw hundreds and they all told me the same thing. I needed anti-depressants, anti-anxiety pills and that it was all in my head. I was called a hypochondriac and worse. Finally I wound up in the ER and this time met a doctor who understood Celiac disease and did an intestinal biopsy. When he told me what that I had Celiac disease I was relieved, redeemed for lifetime of being called a liar and also devastated that I would never eat normally again. But, I have regained my health, have put on weight and feel good and no one can take that away from me.
You simply cannot put a price on health. As much as I hope you do not have Celiac disease, if you do and it makes you feel better it will be so worth it. I wish you all the best!
CD
I need help….I have 95 percent or more of these symptoms!!!
I am to the point of giving up!!! I need help bad. I have a huge list of symptoms and I have 98 percent of thoughs symptoms including impatigo back hip leg pain cold soars all over my face vaginal bacteria (and I am not sexualy active) stressed out depressed bad feels like my bodys braking down. Blurrie vision panick attacks adhd hair loss constantly thirsty withdrawn stay in 24/7. The list goes on and on. Do I have this? I want to get better im sick and tired of being sick and tired and in pain!!!!
Stomach pain constantly brusing ichie headakes neck pain cant sleep cant eat heart pounds poor surclation down out depressed and had it. With the infections and cold soars. One thing after another. I just want to curl up in a ball and sleep forever.
Stacy – I happened to be reading this old thread and saw your posts from a few weeks ago. I hope you’ve already been to a doctor and gotten help. But, if not, if you are having stomach issues, call a Gastroenterologist as soon as possible for an appointment. Make a list of your symptoms and take it to your appointment. Well wishes and prayers for you, TFWF
I am so happy I found this blog. I have been tested for celiac through a blood test and it came back negative. I have so many of the symptoms though. I was diagnosed with anxiety, depression and IBS. I have a terrible stomach. I will either be bloated and constipated one day. Then the next day have terrible diarrhea. After I work out no later than the afternoon I have muscle spasms, cramps, fatigue and feel very sick. I don’t know if anyone else experiences that? Also should I just ask a doctor to redo the blood test? Even with being on meds for my anxiety and depression I still don’t feel better. I still have bad cramping and I’ve recent started to skip periods (not prego). Then when I do have one I am having intense cramping. I am getting tired of not feeling well.
This is a great and accurate list. I know this post is old, but perhaps you could also compile something about people who have been on the diet for some time and have certain symptoms that are clearly celiac related and still won’t resolve? I have been on the diet for over 4 yrs now and still have vomiting and bowel problems. Many things have gotten better, but not all. And if I do accidentally get glutened, the symptoms seem to be different each time with the exception that I always get tachycardia. And they last for weeks. Thanks for all your hard work!
Thanks Jacque. Could be some other intolerances going on. I ended up giving up soy and dairy after 3 years of still feeling like crap. Helped a lot.
I have given up soy also. I had the skin prick testing done and there were like 30 other foods it showed I have a problem with 🙁 I don’t really know how accurate the skin testing is, but it seemed pretty right on. So I do still eat some things I am not supposed to have (not gluten)…as my options are limited. I stumbled upon your site looking for info about dh. I ate some supposed gluten free pasta at a restaurant last week and now have a rash all over the side of my face. I also quit smoking and started chewing nicotine gum the same time. So I am trying to figure out if the rash is dh or a reaction to the gum…Your site is really great though! Thanks so much
Hi, have you ever sprouted wheat berries? It is easy to do. After it sprouts you dry it and mill it into flour. I understand this changes the wheat and removes the fitogens and releases new vitamins. It is easier for everyone to digest then. A traditional way to prepare them even might make it possible for someone with celiac to eat wheat. Have you looked into this before? I just figured out all my problems are caused by celiac. I never knew until I shared with my endocrinologist about my mouth sores.
I love bread goods and am looking for healthy substitutes. What I find in the stores for gluten free are poor excuses for food. They are loaded with bad oils. I hope people understand that glueten free doesn’t mean healthy food!
This sprouting process solution sounds dubious to me. Does germination actually biochemically change the proteins that cause our auto-immune response into substances that are antigenic-ally inert?
yeah….and I am not sure what fitogens are….
What if you have these symptoms, but you’ve been tested for Celiac and the blood work was negative. I have gone gluten free and been successful at it…for the most part…but without a definite diagnosis i’m not taken seriously (even my own doctor said, “we don’t really have a lot of research not he subject) when I told him that my IBS was 150% better, I had no migraines and my joints didn’t hurt…..so frustrating…
Great list! I had the blood test and it was negative. Have had ibs issues and other things for a long time and a daughter with celiac disease and a son (that won’t get tested) with type 1 diabetes. My question is I’ve been gf for about 4 yrs now and I have fibromyalgia pain and other issues…at. 55 will the fibro ever go away? I”m on meds to try and deal with it, but it still runs my life and I feel sickly. Should I just bite the bullet and go grain free? I’m so sick and tired oif being sick ad tired!
Really, on a survey of 150 people you put out that miscarriage and infertility are side effects, really!!!!!!! That is extremely poor. In an area that is extremely emotive you list these as side effects of coeliac? That is irresponsible. This infographic will circulate and become internet truth and then “oh being coeliac makes you miscarry/ be infertile.” Who knows, which proper studies there may be a link, but by asking 150 people, of whom you don’t specify how many are women of child bearing age with no other underlying causes for miscarriage or infertility, you cannot accurately claim miscarriage and infertility as a side effect. To do so is irresponsible. This applies to a lot of the symptoms, but I have chosen the reproductive ones as it is such an emotive and guilt laden area.
You need to highlight at the top, this is not a scientific study, this is anecdotal evidence off unmatched individuals. I wonder what response you would get if you asked non coeliacs the same questions? THEN you may start to see some valid results, that hold some validity.
Hi Tracey,
Here’s some scientific data from the Celiac researchers at Columbia University that support GD’s information on celiac disease and infertility. I found it on the NIH’s website http://www.pubmed.gov. If you search through the website, there have been many, many studies showing a link between untreated celiac disease and infertility and miscarriage. I can provide you with additional info if necessary. I am interested in this because I had two miscarriages as a result of celiac disease.
J Reprod Med. 2011 May-Jun;56(5-6):199-203.
Increased prevalence of celiac disease in patients with unexplained infertility in the United States.
Choi JM1, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH.
Abstract
OBJECTIVE:
To determine whether there might be an increased prevalence of undiagnosed celiac disease among a population of infertile women using serologic screening.
STUDY DESIGN:
A prospective cohort study was performed at an academic infertility clinic in the United States.
RESULTS:
The overall prevalence of celiac disease in this population was 2.1% (4/188). There was a significantly increased prevalence (5.9%) of undiagnosed celiac disease among women presenting with unexplained infertility (n = 51).
CONCLUSION:
Women with unexplained infertility are at increased risk for having undiagnosed celiac disease, which may be a potentially modifiable (and treatable) risk factor.
Yikes Tracey…I think it’s pretty clear this is an unscientific approach based on responses from people in the celiac community.
And infertility was mentioned plenty of times. Not only that, but I’ve heard private stories from celiac women confirming that there may indeed by a connection.
Add to that Jess’s response above (thank you) and you see that it should indeed be listed.
I don’t mind your rant, but don’t make it seem like I have an agenda or I’m trying to instill fear or spread info.
Thanks.
I had two miscarriages myself during my child bearing years. I also successfully carried three babies to term which I had to plan very carefully and had to take hormones in order to become pregnant with.
Well to be able to finally link my fertility problems, heavy bleeding, early menopause to CD is a relief for me. Having only one child, having to have a hysterectomy at the age of 36 – I couldn’t understand why until I learnt from another websites ie coeliac uk ‘official site’ about this relationship. I back up that if I had entered this survey I would have had it on my list of past symptoms.
Wish I had seen this comment from Tracy when it was first posted, but I see Jess has responded already.
I will just add that since the University of Chicago Celiac Research center lists “persistent miscarriages or infertility” as a symptom and a REASON To BE TESTED for celiac, it appears this is not just anecdotal or irresponsible. I had 4 myself (one was a set of twins) and never could carry to term.
Q:
Who should be tested for celiac disease?
A;
Those who fall into the following categories should be tested for celiac disease:
Children older than 3 and adults who are 1st-degree relatives of someone with celiac disease
Persistent miscarriages or infertility
Type I Diabetes Mellitus
Autoimmune Thyroid Disease
Irritable Bowel Syndrome (IBS)
Asthma
Multiple Sclerosis
Primary Biliary Cirrhosis
Down Syndrome
Turner Syndrome
William’s Syndrome
Hashimoto’s Syndrome
Graves Disease
http://www.cureceliacdisease.org/archives/faq/who-should-be-tested-for-celiac-disease
Thanks for this! Athough I am not suffering with celiac disease….I am hypersensitive to casein (dairy) and it can destroy my life if I am not careful. The symptoms you list here are EXACTLY the same as the casein issue I have. I would encourage anyone who tests negative to the gluten testing to also seek a possible casein intolerance (which is much different than mere lactose intolerance, I may add). It almost destroyed my life, and with this under control…I can live again.
I get sick from casein my throat gets hoarse and I am the same with artificial sugars. Maybe celiac is like Covid ? Who knows? Turn on the news surprise a new symptom is added to Covid .
Let me start by saying I love this infographic. I have it bookmarked on my phone, my computer, and I’ve shared it numerous times with others to try to help them understand that this isn’t a laughing matter and that I’m not pulling symptoms out of some imaginary hat.
That being said, part of me is curious, especially with some of the symptoms, how many ended up getting additional diagnoses. I wonder if in the end celiac did cause all of their symptoms from joint swelling, neuropathy, etc or if they ended up with another autoimmune diagnosis like MS or Lupus, etc.
Thank you for this site, Gluten Dude!
~Julie
When I lived in florida I would go to Delray to Celiac support meetings all kinds of doctors educating patients about celiac and dual diagnoses which usual comes with any kind of. auto immune disease . Educating us on nutrition . Though once villi grows back doctor says you must continue gluten free
Wow… thank you very much for this website. I wish I would have done research on Celiac Disease, especially this website (p.s. it’s way better than every other site that I’ve seen so far), years ago. I am finally going to get tested in less than 2 weeks (blood tests), I am 99% sure I have Celiac, and probably have had it for a long time. Thanks again, you do an amazing job! This is now my ‘go-to’ site! 🙂
I was diagnosed with many of the above mentioned symptoms. I found only one that I HAD that was not on the list. I was diagnosed in 2013 with Crohn’s Disease. As of my last report a month ago, no signs of the disease!
Did your dr put you on a steroid ? My gasterologist said I could have both though she went with coceili though she said I have some chrohns that was years ago . I do go yearly for endoscopy
This info graphic pretty much saved my life! This past January I started having ALOT of medical issues and I legitimately thought I was dying because the sickest I had ever been was strep when one day I was scrolling through pinterest and I saw this and my life suddenly made sense! It lead to my diagnosis of celiac and now six months latter I`m doing much better! THANK YOU SO MUCH!!!!
Woot!!!!!!!!!
See what you think. Three years ago my life turned upside down. Anxiety, fear, sinus problems, dizzy, brain fog, eyes hurt bad, loss of hair, weight loss and can’t gain, no moons on my nail beds, warts on my hands, no concentration, BAD burning scalp, bloating, gas pains with no gas, loose bowels, can’t eat anything grainy, can’t sleep, vomiting, severe stomach pains etc. I’ve been to countless drs and have been celiac testes by blod work and endoscopy and biopsy. Showed no celiac but I do have gastritis and feed. Can anyone help?
Feed should of been Gerd. Oops
Sorry but I remembered more symptoms. Neuropathy, tips of my fingures go numb when I’m to cold. Achy but no fever. Bones aches, I turned gray headed almost over night, dark circles under eyes. Brittle nails, fatigue bad. I think that should be the bulk of it. Thks
Doctors did not work for me either. I’m new to this so the only thing I can suggest is read labels and try the GF lifestyle and see if it helps. It can’t hurt! Good luck and know that other people have been where you are. 🙂
My journey started with a trip to the ER in May. My brother has Celiac. I almost died with mono when I was 15. After almost passing out while shopping one day, fighting a migraine, the ER doctor said ‘hashimotos’. Prior to that I almost lost my second child. Could not conceive after. I suffered for years(over TWENTY now) with anemia, reflux, heart palpitations, etc. I was exhausted all the time, I was accused of being a closet drunk, druggie, etc. NONE of which were true. More recently(past few years) I have struggled with anxiety, depression, IBS, reclusiveness. I got tired of no answers. I do drink now and was very honest about what and how much. The ER doctor chalked all my problems up to alcohol and sent me on my way with a nasty lecture and some meds. I decided after much research on my own on the internet to go gluten-free and avoid HFCS as much as possible. This has changed my life, at least mentally, in ways I cannot describe. I feel the old me coming back. For the past two years I would rarely even drive farther than the grocery store alone. I am so thankful for sites like this. It has been an adjustment- reading; reading labels and looking for recipes. I spend a lot of time cooking since there is not a lot of local places that have GF products. And yes, the bread is expensive and not great but okay if you are really hungry! Right now I have good days and bad days. I just would like to know, when do you start feeling ‘normal’ again?? Lately my joint pain is really bad and the muscle spasms, UGH. I’m guessing its trial and error. Any replies appreciated! And I was a little overweight, lost A LOT of weight during this bad spell and now I feel bloated half the time. Mine is mostly abdominal and its kind of embarassing. I have always been fit but now I have little energy. Still consider myself fairly active. Again, any replies are helpful! God bless GF dude!!
*and I forgot to mention what starts us all on this journey- IBS for a couple years now and the ER trip because I got SO dehydrated I could hold NOTHING down for two days
I gave up on doctors also. They hadn’t a clue. Someone mention that people with stomach issues need to take magnesium. What has really helped me is a good probiotic. But the magnesium is lost during diarrhea and sweating. I also drink aloe Vera juice every day. I have been gf for two weeks and the bloating has gone down and nausea. But right now I’m going thru gluten withdrawals. Yuck. But I would check into the magnesium though. Needs to be something other than magnesium oxide. It’s not very absorbable. Hope this helps Wyn. It hard to remember to read labels but a habit I’m willing to learn. Good luck
I was told fiber I also take probiotics and a multi life with minerals and digestiveenzymes
Hi! What awesome information. I was just recently diagnosed; through routine blood test my doctor picked up on it. I’m still awaiting my scope for confirmation so haven’t started an official celiac diet.
I’m 55 yrs old and I’ve had life-long stomach problems.
Miscarriage in ’86. Always had teeth problems; dentures now
1993 – bowl problems noticeable
1995 – diagnosed with clinical depression – still on meds
1999 diagnosed with arthritis – and its everywhere – my neck to my toes. Chronic fatigue.
neuropathy issues in hands and feet started;
2006 – Family stress so made a move; major problems with nerves in arms; worse braces for several weeks. I’m still on gabapatin.
One night had a seizure
A year from hell
2007 – hormone replacement therapy – I’m still on meds
2007 – 2010 – Brain fog often; short tempered; blamed it on menopause and stress. Toes go numb all the time if not wearing Birkenstock shoes. Rashes and bumps all over my limbs and I constantly pick at them making them worse. Often wearing many (like 7 or 8) bandages to cover sores.
2013 – started suffering every evening – it would start with my legs get weak; then I’d start to feel cold and shivery; progressing into all out body tremors. I have to crawl into bed with many layers of blankets; quilts, socks, etc. Not able to talk; fast breathing; freezing; trembling; teeth chattering. Tingling and numbness in hands. I would fall asleep in this state and wake up sweating of course from all the layers.
This was happening every night for months but I just blamed it on stress and hormones as my work was very stressful at a time when my husband was dying of cancer.
My husband passed away this past December. So now, I’ve actually started focusing on my own health.
Today – I just had another tremor episode tonight but now I see the direct correlation to the food. Weak, freezing cold, numbness; tingling real bad; shaking. I’ve learned too that Tylenol really helps.
Regularly my hands are tingling; toes are tingling; bowls always loose; brain fog; exhausted for no reason.
Tomorrow I will be in the bathroom lots.
Thank you for this site. I know I’m going to need the support as I move forward with this disease. I’m also terrified to get the scope done. Eeek
Glad you found us. No need to be scared of the scope. They “should” put you under.
I have a question. My daughter is 15 and diagnosed with Celiac through an endoscopy about 8 months ago. She is now gluten free, dairy free, low sugar, low fod-map, no gassy foods…. Anything we can do to make her feel better – she had been getting severe pain in several different parts for the last many months. Now she is doing better, but the pain is localized and continues in her back. Any ideas about middle to lower back pain? Happens every day and sometimes bad. I don’t even know if I should go the gastrointerologist or a different doctor to check on it.
I don’t know if this will help her, it’s worth a try, for years I suffered with IBS, borderline cealiacs, wheat, etc, I found swimming in heated pools would help ease the pain, it not only relaxes the muscles but helps the body repair as we can stretch our muscles easier and this helps too. I feel for your daughter as I have 5grandchildren and 2 have afflictions, one is diabetiac 1 and another is cealiacs and another is austistic. When you get her to have physio swimming for 6months and keep a diary of a pain manual, this is a great asset to a doctor. Hope this info helps her..jenny..
This site is amazing………….wow. I’m just trying to find out what my problem is. Have had the test for gluten intolerance, and it came back negative, so of course they do not check you for celiac. Had the lactose intolerance test done and I was totally intolerant. Was terribly sick for 5 hours after the testing. Waiting now for an endoscopy, but I was told by the specialist that it would be into next year before I could get it. I am trying very hard to be totally gluten free, but I’m obviously missing stuff as I’m still having the cramping, bloating, headaches and many more symptoms. Thank you for this site, it is very helpful.
My nephew is 15, and has been diagnosed with Celiac due to biopsy. He was diagnosed 6 months ago, and has been gluten free since. He is extremely smart, and it’s a good thing because he has missed so much school he has to have a homebound teacher in the evenings when his mother is home from work. He is gluten free, and completely understands the importance of it. He totally understands cross contamination, and has studied Celiac. The problem is, his doctor has him on medications that don’t help him as far as I’m concerned. His stomach ALWAYS hurts, and he never feels like doing anything. He has periods of sleeping for days. He is a wonderful boy, and never complains. That’s what hurts us so much! He will go for a few days, and sometimes even weeks without vomiting, but then it comes back. His MAIN symptoms are extreme stomach pain, diarrhea, exhaustion, and vomiting. The diagnosis took several years, of course, and it seems like he has been to all the doctors in town. The one that diagnosed him just saw him a month ago when he was totally dehydrated from vomiting, and he said, “Well, we’ll see you again in January! I’m just sick about it myself, and my sister is worried to death. He was in the marching band at school, but had to give it up. I was just wondering if any of you could offer some help, or advice!! Thanking you in advance, Bren
I posted my comments in December of 2014, and not one of you has replied… Not even Gluten Dude..
Thanks a lot..
Figuring out the reason behind continuing symptoms is complex and extremely individual. I’ve been dealing with celiac symptoms for most of my life, so I have a lot of damage, some of which is permanent. For many people, the problem is some sort of continued cross contamination with gluten, but not always. Dairy, corn, soy, eggs, and oats are problematic for many celiacs. It’s not always the gluten. Living in a mixed household can also keep some people sick. I didn’t start to heal until hubby went gluten free too.
It took a lot of trial-and-error to figure out my own issues. I had to go on an elimination diet, eating only a few foods that didn’t hurt my stomach. I started with chicken breast and soft veggies. I got rid of every non-food product in the house that had any type of fragrance and went completely fragrance-free. I was gluten-free, of course, but also added dairy-free, corn-free, soy-free, and oat free for a full three years. I cut way back on my fat intake. Too much fat can also give you stomach aches and diarrhea when your intestines are still inflamed.
I then added foods back in one at a time, very slowly, so I could evaluate how each one affected me. The same with non-food products.
I cannot eat whole grains (just white rice flour and starches), flaxmeal, psyllium husks, or foods heavy on fiber. I eat hardly no dairy. No oats, even today. I have Grave’s Disease (hyperthyroidism), which causes diarrhea due to how quickly food passes through your digestive system and makes you weak and exhausted, but I don’t throw up or have stomach pain from that.
For me, stomach pain always means too much fiber or fat, or gluten contamination, but that’s just me. It’s impossible to say what’s causing the problems for your nephew.
Thanks so much for helping so many people out here! Not sure if I need to be Gutten (sp) LOL..free or not; just want to let you know what’s been bothering me lately…First up, I will tell you I do have a CA tumor on a kidney, which was found after I had gone to the ER because I was having, once again, another bout of diarreah, vomiting, very dry mouth, sweats and this always will come upon me very suddenly, without much warning. (Once when this happened, and went to the ER, it was after having a glass of wine…and this had happened many other times before and I would get sick, only having congested a small amount of alcohol.) The Drs at the Univ. hosp. said “No more alcohol”!! I haven’t had any since. But, that wasn’t the end of my getting sick in the same way at other times. So, now I’m wondering if I may be allergic to other foods, such as glutton or dairy products. Wondering what your thoughts are on my problem or could it be related to my kidney? Thanks again for all the help!
I have been through the ringer with my Celiac, the Dr who “diagnosed” me said I had all the symptoms with none of the damage he had expected therefore I should just assume I had the disease and eat accordingly. That was three years ago, today I struggle still since I don’t really have a firm diagnosis which means no Dr. to guide me. Your list does help me a lot tho I just wanted to say thank you for taking the time and putting in the effort for people like me who have allergists and oncologists (yes I have dealt with the big C) who give us ghost diagnosis but no real causes. I went to my primary care and asked him about Celiac after an allergist gave me a card with so many food allergies I had no food choices left, most of them were proteins found in every food including Casein(the protein that produces calcium) and Gluten as well as Iron. Our bodies reject the good things that bodies need to survive that is why we are susceptible to diseases in my humble opinion. My immune system is strong for the most part however when I got cancer my Dr. said it was the most aggressive case he had ever seen(which led to a hysterectomy at age 28). I believe that was due to my Celiac, of course that is just one lay womans theory. Again thank you for this very enlightening post and I hope that it helps many, many more.
Thank you Gluten Dude, this is the most resourceful website I ever came across regarding this subject and the community is the best! It has helped me tremendously!
I live in an underdeveloped country and consequently, never got the diagnose, but once I made the research myself (with the great help of this website) and went g-free, all my brain fog, inflamed joints, migraines, irritability, depression, aches etc., completely cleared away in less than two weeks! Previously I was so ill that I thought I`m dying and going crazy.
Now, the thing is that if I get glutened, the symptoms seems to be much worse and it happens to me more often lately, although my home is completely g-free, except for pet food. I think I might be getting cross-reaction from chocolate (stated gluten-free) that I sometimes eat and I could tolerate it earlier. Or I`m missing to identify the intruder. But I`ll stay strong and keep researching, although it is soooo hard sometimes, like now, as I`m again glutened for no apparent reason. The symptoms always last for a week and really make me so isolated and suicidal.
Thank you all for the advices – Epsom salt baths, bone broth (although I usually do not consume meat), lots of liquids, rest, pumpkin banana purees, ginger and this supportive community eases my symptoms a lot.
Be well! (and excuse my English, it is not my mother tongue and I don`t use it often :))
So glad you found us. Continued healing.
I commented in December of 2014, not one person replied to me, not even you G.D.
Brenda
Corn and wheat both have a similar protein that causes issues. If you are still eating corn, you may want to give that up. I have noticed that I’m still getting issues from foods that are GF. I don’t know exactly what is causing the issue, but I think its a preservative found in packaged foods. Try documenting what you are eating and when you have issues. I’ve found that if something is causing issue, then I know immediately.
My sister posted a comment about my son who is a Celiac, and not one person replied …. Not even Gluten Dude.
She commented in December of 2014. Was no one interested?? Not one word of help..
Brenda and Lisa…my apologies. I wish I could reply to every comment. I simply cannot. There have been over 25,000 comments left on this blog in 4 years. I do my best. Thanks.
So I was tested for celiac disease after being gluten free for awhile. Can you get a false negative? I’m pretty sure I have it. I have almost every symptom on your list. I have a daughter with celiac disease, a son with type 1 diabetes. This isn’t a coincidence right? I also have chronic pain that was diagnosed as fibromyalgia. Will the pain ever go away. I’ve been having the runaround from doctors…I wasn’t even sure what to do. I’m seeing a PT now and it’s helping. The problem is without the test from the dr being positive I don’t really know. So sometimes I eat an occasional gluten filled treat. I don’t react with bloating or cramps anymore, but that doesn’t mean the illness is gone right? I should be more vigilant probably?
Gail,
You have to be consuming gluten regularly in order for the blood work panel to be accurate. If you “sometimes eat an occasional gluten filled treat” depending on what occasional means to you your testing is not going to be accurate. If you do indeed have celiac disease you really must remove it and any chance of cross contamination from your diet.
Best wishes to you.
So it sounds like I probably have celiac disease? I was totally gf when I got the test. But over the last few months I relaxed some ie the gluten filled treats. Because I figured if I was only gluten sensitive it didn’t matter. I actually tried grain free for 6 months for the pain. It didn’t help. My occasional gluten treat is about once every week or 2. I don’t even have stomach upset anymore. But last week I ate at a Chinese buffet…and felt sick with mild cramping. I think I should go back to strictly eating gluten free, don’t you?
Hello GD
What is really scary for me is that I have had 69 of that list’s issues! And my family says I’m overreacting…
Now I bring my own food to parties but its a constant trial.
Thank you GD!
This is such an absurd condition, I wouldn’t give up gluten if I only had minor symptoms, especially non gastro-intestinal minor ones. Are you serious about cross contamination causing it? How will we ever be 100 percent free as some are saying? My symptoms are burnt rubber smelling or sewer smelling gas that could clear a building. Others are bloating, discomforting movement inside intestines, nausea, lethargy, pencil thin stools if not sludge or diarrhea. Unrelated or related things I have are depression, anxiety, hypothyroidism, my son has type 1 diabetes, etc. what a wonderful life huh? Thanks though dude for your efforts. Very cool
SymptomList
http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
This is incredible, thank you for giving me peace of mind that it’s just my celiac disease acting up after struggling with gerd/low iron/skin issues.
Thanks for the chart. I feel like I have most those symptoms, but that could also be my Hoshimoto’s Thyroiditis (hypothyroidism) symptoms. I did the blood test and it came back “seronegative”. (Results: Negative seriology. Celiac disease unlikely. However, approx. 10% of patients with CD are seronegative. Also, patients who are already adhering to a GF diet may be seronegative. Consider HLA-DQ typing.) When my doctor ordered the test I asked her if it would even work since I’ve been GF for 3 1/2 years. She said if you have the antibody it would show up on the results… I feel like I shouldn’t have even done the test, not looking forward to that bill. A couple weeks ago I had terrible stomach cramps (felt like labor pain). After reviewing everything I ate that day I realized I may have dairy problems now, too. I’ve been eliminating dairy from my diet the past 2 weeks and feel better. Any other issues with celiac, hoshimoto’s, and dairy allergies/intolerances??
I have figured out I have a gluten and dairy intolerance through my own research and elimination diet. I went to 3 doctors who would not find out why I’m feeling this way! The first gave me anti-depressants. The second tried to give me an anti-depressant but it’s used for migraines. The third gave me an antibiotic and tested me for environmental allergies and said to take an allergy pill and a nose spray and just live with it. I asked her if it could be gluten and dairy and she said to just try going off it. It took a couple of weeks to find out I can’t have either and a couple more weeks to find out I can’t have any bit of gluten or dairy. I started feeling amazing then got glutened and all symptoms came back with a vengeance!
Headaches
Itchy scalp
Tingling scalp
Feeling like my head would burst from the inside
Nose pressure
Blurry sight and vision disturbances
Swollen eyelids
Dizziness
Nausea
Anxiety and depression
No energy
I have always had irregular periods, skipped periods, and have had 2 miscarriages with a bit of trouble getting pregnant. Never knew this could be related!
Forgot a few!
Hair loss
Acid reflux
Brain fog
Major PMS and cramps
Right breast leakage (pituitary glands can be affected by gluten)
Forgot a few!
Hair loss
Acid reflux
Brain fog
Major PMS and cramps
Right breast leakage (pituitary glands can be affected by gluten)
Bloating
Sore throat
Ears clogged
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This chart is fabulous and will help my daughter to see that even if she is not diagnosed with Celiac, she needs to try a gluten free diet in the event she has non-celiac gluten intolerance. She has almost every symptom on the chart yet no one can find out what is wrong with her and she is terribly sick. I also appreciated the celiac and psychosis article. Thanks so much!
What a load of bullshit. These symptoms are just the same for other health problems. You can’t get celiac disease in your lifetime if you aren’t born with it, you don’t get it from eating bread or having sex. Stop this bullshit.
You’re a deep guy Ukko.
You’d be just as deep if you stopped posting such ridiculous bullshit and learned the facts about such diseases. Ok, it’s possible you’ve got it, but that doesn’t mean people who have these symptoms also has it. And for more, doesn’t it make you question why do you or anyone else got the celiac disease? While thousands of years bread and grain products were just fine for people t consume, it’s only the later years they’ve been found guilty of all kinds of “serious” diseases like celiac. One word .. roundup and GMO (oh damn, that’s more than two words, well, can’t blame me, I’m not as smart as you are). And then it’s a profit for medical industry and food industry, they are both ripping you off and you can’t resist it, because you keep tolerating the same bullshit. Have a great day and … hopefully… you’ll get better, starting with your head, that you get the bullshit out of it, that will lead to the healing of the rest of your system.
What’s your angle on this Ukko? I’m serious…what BS am I spreading?
My angle is… can you read? I just explained my view on this article and why it’s an utter bullshit. Probably your “celiac disease” hindered with your ability to read, now let me repeat what I said. Those symptoms can be anything, they are the same for many other diseases. And people easily fall for it, look at the comments… suddenly everyone reading this has the celiac disease. LOL. Seriously? Are you damn serious? These self-diagnoses. Wow. And what are they going to do? Start self-medicate? Stick to gluten-free diet? Ok, that’s none of my business how idiots fool themselves with things like this they read on internet. People should first check their brain and then move to something serious like celiac. Happy healing (from nothing), fools.
You’re quite the angry fella Ukko. Breathe. Seriously.
Hi Gluten Dude, correct me if I am wrong but didn’t you ask followers on this site who have Celiac and gluten sensitivities what other symptoms they had? I thought that was a very smart thing to do and very grateful. Since I have a lot of these symptoms and have just been diagnosed with Celiac in the last 2 months.
why are you here?
Unless you suffer from it, yours is a position based on ignorance. Goodbye.
I was very happy to find this site. I wanted to thank you for
ones time due to this wonderful read!! I definitely liked every little bit of it and i also have you saved to fav to see new information on your site.
Hi Gluten Dude, correct me if I am wrong but didn’t you ask followers on this site who have Celiac and gluten sensitivities what other symptoms they had? I thought that was a very smart thing to do and very grateful. Since I have a lot of these symptoms and have just been diagnosed with Celiac in the last 2 months.
It’s so scary how many of these symptoms match stuff that I’ve been fighting for years. I’ve always though most of my problems were caused by stress or that I wasn’t the kind of person I wanted to be. It’s a relief to find something that answers everything, but I’m also scared that tests will come back negative and I’ll be stuck like this forever.
I don’t know if anyone else commented on this, but skin cancer is not caused by celiac disease.