What were your celiac disease symptoms (2024 version)?

most common celiac symptoms in 2024

Dude Note Jan. 23, 2024: Based on over 2,000 responses, we have created the new celiac infographic.

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10 years ago (my how time flies when you have celiac disease), I asked the community what their main symptoms were pre-diagnosis. Cause we all know it’s not just a dang stomach ache. From the responses, I created an infographic that has helped many peeps over the years. Well…it’s time for an update and a new infographic so we can get the latest data out there and help people get the diagnosis they deserve. And I’m asking for your feedback.

So what were your main symptoms? Please respond in the comments section below. Thanks!

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52 thoughts on “What were your celiac disease symptoms (2024 version)?”

    1. Wicked migraines, feet and leg cramps, gas, bloating, acne, rashes all over my body, chronic body fatigue, depression, anxiety, canker sores.

      1. Suzanne Erickson

        Acid reflux was the main reason I started looking into what was going on. After I got off gluten I found out my high blood pressure and asthma was a symptom. Both improved significantly after I stopped eating gluten!

  1. Kathleen Spencer

    Chronic diarrhea for weeks. Stomach gurgling and extreme weight loss. Exhaustion. I had depression and anxiety also, but at that time (1984) I was told there was no connection between that and celiac disease.

  2. I was diagnosed at age 55 — now 75. Prior to diagnosis I had a lifetime of constipation, belly aches, bloating after every meal. All my teeth had been filled, some lost and replaced with various types of bridges. By my early 30s I had fibromyalgia which I was told was “all in my head.” Arthritis began showing up in my 40s as well as debilitating migraines. Female “issues” since the onset of menstruation, including infertility during childbearing years. Dermatitis Herpetaphormis mostly on my hands and eyelids (that was “fun!”). And the chronic fatigue half of ME/CFS hit hard at 60 — even though I was five years gluten-free. I have been compliant with gluten-free eating, and my migraines stopped, DH resolved, and the fibro pain is gone (although I also take low-dose naltrexone for that as well), but arthritis does not end, an I still have bouts of chronic fatigue — also known as long-haul covid (FYI). My last bout was the result of the latest covid vaccine. And arthritis-wise, I have had 6 joint replacements to date. My entire life would have been different in many ways had my diagnosis happened in childhood — as it should with everyone!

  3. Migraines, eczema, anemia, and misdiagnosed with IBS. Given antidepressants and painkillers (it was the early 2000s). All symptoms alleviated when I went gluten free. Wish all those doctors were educated and had me tested!

  4. My child was diagnosed at age 6 because at age 5 she stopped growing. Completely. Despite having very good eating and sleeping habits. Because she didn’t have any g.i. or skin issues, her doctors explored a whole host of other possible causes and subjected her to a barrage of tests. Then someone who’s child had been diagnosed with CD told us that “failure to thrive” is a celiac symptom. Sure enough, one endoscopy later we had a clear CD diagnosis and she began the gluten free diet. She grew 6” that very next year.

  5. Nausea and diarrhe. I thought it must be menopause. (There was bloating too but it took longer for me to recognize it). It took 5 years to get a diagnosis.

  6. Diarrhea and vitamin deficiency. I have had chronic, daily migraine for almost fifteen years, and not eating gluten had zero affect on my migraine disease, because I have primary migraine disease, it’s not just a symptom of celiac. One symptom that improved after I stopped eating gluten is my airborne allergies that I’ve had my entire 53 years. I still have them, but they are more manageable. Thanks for this! The responses are interesting.

    1. I’d love to hear from people who high symptoms disappeared, improved or didn’t change with a gluten free diet.

  7. Crushing fatigue (‘lead legs’); peeling fingernails, mouth ulcers, severe brain fog. These “atypical” symptoms meant it took years to get a diagnosis.

    1. Oh wow! You have described issues that I have been dealing with, My son has had a slew of horrible life altering symptoms for two years now. They have ran every test except for Celiac’s and GERD. And I’m almost positive he has both.

  8. I had stomach issues since I was about 5 (random pain and diarrhea, but also constipation, and avoidance of many foods—never had an appetite, was malnourished, was told just a picky eater. Lived on potatoes). Fast forward to early 2012, when I started getting random huge hives all over. My migraines increased. I then started with daily diarrhea which became chronic, so I made an appointment with a PA at a GI Doctor nearby. I tested positive for c-diff. Diarrhea continued getting worse—20x a day, severe random stomach pain prior to diarrhea, stomach gurgled constantly, no appetite, migraines, and fatigue. Kept being told it was hard to treat cdiff even though I was testing negative. I went through several rounds of flagyl and then vanco for months. Underwent a colonoscopy which found microscopic colitis. So I was treated for that without any relief for a long time, until the GI doctor decided to do the upper endoscopy after finally asking me if a family member had Celiac and during an appointment to get me on a feeding tube for failure to thrive. I was 84 pounds. My uncle has Celiac, but I never knew what it was and didn’t associate my symptoms with his, because he has no stomach issues at all—he has joint issues with Celiac. I was scolded by the dr for not mentioning it and I scolded right back that I didn’t know what it was and that was his job to help me. Finally diagnosed in 2014–This was 2 YEARS OF BLATANT SUFFERING!! I have a new and wonderful GI Dr now and also, due to my diagnosis, I saw some symptoms in my 6 year old daughter that I decided to question her wonderful pediatrician about and asked if we could test her too. She had leg and foot cramps, “stinky” morning gas, migraines (age 6!), and a lot of mood swings. He referred us to a pediatric GI Doctor and she was diagnosed within a few weeks!

  9. Anemia, depression, broken bones, PMS, migraines, then fibromyalgia, more broken bones, gas, constipation and occasional diarrhea… I got diagnosed after going to Oregon health and science University to be diagnosed for fibromyalgia and they suggested I get tested for celiac disease to rule it out. The fibromyalgia improved the headaches improved the depression improved but now I had a new reason to be depressed🥴 and my acne cleared up.

    1. I have peripheral neuropathy too, along with some other not so fun symptoms. I was diagnosed cyclic disease, but I was still having symptoms. Then finally I was diagnosed with gluten ataxia. I am mentioning this because usually people with neuropathy Gluten Issues usually end up having gluten ataxia

  10. Sudden onset of debilitating migraines at age 31. They were so bad, I couldn’t even hold water down. As soon as I would recover from one, I’d go right back into another one.

    Dermatitis Herpetiformis
    Catastrophic thinking
    Panic attacks
    Insomnia with racing thoughts
    Hair falling out in clumps
    Extreme mood shifts
    Weight loss
    Constant bubbly stomach

  11. TERRIBLE acid reflux (was diagnosed as having chronic bronchitis, )which of course I did not actually have) and Anemia- especially during my pregnancy with twins. I went to term and had two healthy twin boys but only gained 26 lbs. I couldn’t could nurse them Because I couldn’t produce enough breast milk. I was prescribed “brewers yeast“ to enhance breastmilk production. In hindsight, I learned it was full of gluten. my body was just sick. I was diagnosed when my kids were three years old.

  12. My son was diagnosed when he was 6, so there were probably symptoms that he just never had the words for. He had severe anger management issues (we assume because he always felt like crap). He was actually diagnosed with ODD first. He doesn’t actually have that, and never did. He couldn’t potty train. He either had diarrhea or he was severely constipated. The one that we specifically asked about were fevers. He’d get these fevers that would last for days. There were no other symptoms of any illnesses. He’d sleep so much that he’d become dehydrated so bad that we needed to go to the ER for fluids. They steadiky got worse and worse. When we asked the GI, they said that it wasn’t likely related. Fast forward a few years and his GI tells me they have another patient who had them… so now that’s a thing. Both kids’ skin and hair improved and just look healthier overall.

  13. Chronic stomach pain and aches, brain fog, depression and fatigue.
    I assumed it was the IBS diagnosis I received at age 18, but when I was pregnant with my second child (at age 30) my symptoms got significantly worse. This led to multiple unproductive dr appts, with no answers, until finally I saw a Gastroenterologist and he diagnosed me with celiac.

  14. Extreme fatigue(ME/CFS), brain fog, bloating, many food intolerances (most of which I still have). Took a long time to get diagnosed because when a trial gf diet benefitted me, multiple Drs told me their judgement was that I didn’t have celiac. Fast forward almost 20 years and 5 years after a gastroenterologist told me I needed to eat like I had celiac disease because of my symptoms and colonoscopy findings, I was diagnosed by genetic testing plus clinical signs. Because I was eating gf and didn’t think I would survive 3-6 mos of daily gluten for endoscopy, I was late diagnosed. However in 3.5 years of complete avoidance of gluten and gluten contamination, my health and quality of life have improved immeasurably. I am also on a full elimination diet and follow autoimmune protocol. My gratitude for finding a way to feel better far exceeds the aggravations that the condition brings!

  15. Fatigue, migraines (which I’d never had before), daily pounding headache that Advil couldn’t put a dent in, brain fog, sudden weight loss, continual sinus infections.

  16. Erin Fallon-Coursey

    I had been having diarrhea that I had been treating like it was diverticulitis. However, what really made the doctor notice is my one eye was “off”. I had a droopy eyelid. Now it is permanently a bit smaller as it has been 7 years since diagnosis and my one eye isn’t opened as much as the other.

  17. I had a lot of symptoms that I had no idea were related, but in the end I put it all together because of a comment from a pharmacist when I was in my early 20’s: I had chronic yeast infections my entire life, and after filling my diflucan prescription for about the 100th time he said “I think you’re allergic to wheat, my wife had the same problem and that was the cause. Go get checked out”. Turned out not to be a wheat allergy but celiac.

    Growing up I was constantly sick and on antibiotics. My immune system has never functioned right. I was tiny, skinny, a “bottomless pit” when it came to eating because I wasn’t absorbing anything. Lots of flu-like stomach symptoms as a kid. After going gf in my early 20’s I grew nearly 4 more inches!!

    Adult symptoms: my friends/bf thought I had early onset Alzheimer’s. I couldn’t remember things from my childhood that most people can, and my short-term memory was pretty much non-existent. I guess that’s brain fog? I had stabbing pain under my sternum and plenty of other GI symptoms-given how my entire life had gone I just thought it was normal to have a constant upset stomach after eating. I was constantly itchy all over, but didn’t have any visible rash most of the time. Lots of vitamin deficiencies and white spots in my tooth enamel. Unexplained fainting, thyroid issues, vitiligo.

    Now that I’m 100% GF for over a decade I have lots of joint pain and react horribly to the tiniest amount of cross-contamination.

    1. Bloating, diarrhea, dermatitis herpetiformis, hair loss/thinning, allergy-like nose/throat symptoms like stuffiness and phlegm, worse neuropathy (I have a neuromuscular disease as well), severe B12 deficiency, fatigue, brain fog.

    2. Margaret Penhorwood

      Your symptoms sound almost identical to mine. I had yeast infections for years, but not a single one now in over a decade. I broke both of my legs 14 years ago just doing a simple run. My bone density was low and I was diagnosed with osteopenia in my 30’s. My bone density has since improved drastically. I also developed anemia. I still have not been officially diagnosed with CD because I did an elimination diet to figure out what was causing my symptoms. I have been fully gluten free since early 2011 and I know I would never survive going back on gluten to get a scope. My doctors have all told me to just keep doing what I’ve been doing.

  18. Low Calcium, Bloating & Lower GI pain whenever I ate gaseous foods such as Broccoli & baked beans. No discomfort from eating wheat/barley/rye products.

  19. The main symptom for me was persistent, severe, unresolved anemia. I was diagnosed thanks to a blood donation referral (the nurse was alarmed enough to say “go call your doctor.” After my scope when I went gluten-free, I realized that I had chronic fatigue too. I’d wound down so slowly that I’d not noticed.

  20. Neuropathy on one half of my body, weakness, exhaustion, and weight loss.
    Spent most of a year thinking I was heading for an MS diagnosis.

    1. 14 years ago before I was diagnosed I was about to be tested for MS. I had/have ataxia as my worst symptom Skin rashes, foggy brained, painful abdomen, extreme exhaustion.

      A little over a year ago I was diagnosed with Crohn’s as well as had the Celiac diagnosis verified (a second time). My guts are a complete mess

  21. For my little girl who was 22 months old at diagnosis. It was sickness most nights and extreme fatigue. Very white discoloured nappies.
    Now we know and have removed gluten from her diet she’s a strong sassy 3 year old.

  22. Neuropathy, canker sores, hair loss, diarrhea, joint pain, exhaustion, brain fog, vitamin deficiency, fatty liver, mood swings, depression, anxiety, nausea, headaches, weight loss

  23. My son: stopped growing and “failure to thrive” concerns. Fell off from 75% in height & weight to 40th over the course of 2 years. Soft stool as well. Pediatrician ran bloodwork and added celiac panel based on his dad having diagnosis. Diagnosed at age 9

    My husband: weight loss, terrible moods, extremely high CK levels (muscle enzymes) on standard bloodwork and doctors could not figure out why. Eventually gastric symptoms of frequent diarrhea became more prominent and was referred to Gastro who eventually diagnosed after about 3 month of many other tests like colonoscopy. Diagnosed at age 42 after 2-3 years of notable symptoms but based on high CK numbers likely had it since he was 37.

    1. Jeanne (same poster)

      Husband also suffered from brain fog, terrible bloating and cramping, anxiety and even had several panic attacks before diagnosis.

  24. Son, age 5 at time of diagnosis:
    Eczema. Allergies (sinus/respiratory, testing could not determine what he was supposedly allergic to, but it was believed to be environmental. Got progressively worse. All symptoms and meds stopped after CD diagnosis and going GF.) Neurological symptoms: Brain fog, rage, depression, poor decision making. Dark circles under the eyes (sign of malnourishment/vitamin & mineral deficiency). Chronic constipation.

  25. Before being gluten free, I suffered from Irritable Bowel Syndrome (IBS) every 3-6 months (hours of painful bloating, & abdominal cramping), I had ongoing depression, anxiety, and panic attacks, my emotions were overwhelming to me and I’d go into uncontrollable rages easily, bowel movements were very 2-4 days (no doctor ever asked), I couldn’t focus on anything complicated or technical to read, I was always skinny (98lbs in my 20s) and I was ‘always’ very negative about everything in life, everything was a crisis and the other shoe was always going to drop soon. My life has changed and I don’t want to go back ‘ever’; now when life is tough my motto is ‘Life Happens’.

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Who I am. And who I'm not.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

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