Treatment Guide

Survey: What Were the Symptoms That Made You Search for an Answer? Did They Improve Once You Went Gluten-Free?

Celiac disease and gluten sensitivity are related to over 300 signs, symptoms, associated disorders and complications.

Symptoms differ for everyone. One person might have gastrointestinal problems. Another might have a mental disorder, without any gut issues. Bones, skin, reproduction, muscles – any body system and organ can be affected.

We were the first publisher to report this in our groundbreaking book, Recognizing Celiac Disease. You can find them all listed on our Symptom Guide and our Gluten Free Works Treatment Guide, our online resource that tells you how to fix them.

When it comes to seeking a diagnosis, there is usually some tipping point or an epiphany where we realize something is really wrong and we need to figure it out.

What were the symptoms that made you seek a diagnosis?

Please answer in the comments below. Your answers will help others.

Thank you!

John Libonati, Publisher

About John Libonati

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Author Information: John Libonati, SW Florida Publisher, & The Gluten Free Works Treatment Guide.


  1. My finger nails developed ridges and then turned to paper about 2 months after my gall bladder was removed. I had noticed other minor signals, but nothing was really alarming or nearly so overt.

  2. I only periodically ran low-grade fever. My daughter has more gastrological issues.

  3. Itchy itchy rash.

  4. Leading up to seeking information I had numerous little symptoms including the development of a strange puffy appearance (in which had to have a ring cut from my finger). I thought it must be some gain in weight leading into winter, some of it might have been due to my energy levels being low for a while already. At same time noticed ‘brain fog’, and now with benefit of hindsight a lack of self awareness. I did notice the ‘memory’ issues beginning to interfere with daily life. I’m sure it contributed to the development of some social phobia and moderate anxiety. About two nights a week my feet would burn. I didn’t have stomach pain or flatulence but some toilet habits had definitely changed. Was not pleasant. I went to my GP but unfortunately nothing was resolved. After listing my symptoms for online search, the results included images of a rash exactly like one I’d had years earlier (three bouts over time), called ‘Dermatitis Herpetiformis’. I had lived this way already for a few years. My early efforts of gluten free diet were woeful so continued to get symptoms. I’ve had two blood tests for Celiac both came back negative. However, if I do not consume gluten I am fine. If I’d known at the time about the rash, could have had a biopsy for a positive result. My GP had not picked up on it, instead prescribing a steroid cream. Incidententally, I had first noticed symptoms as a teenaged but they were so mild in comparison and I did not know what ‘normal’ wellness felt like, for example I’d always had vertical ridges on my nails etc. The major troubles listed above had began when I stopped smoking later in life (44) – in fact I believe it may have brought it on, which is a fair payment I’m happy that I did. I just wish a test would show my sensitivity, or that I suffer from this disease. People tend to ask if I’ve had a blood test to prove it, then I have to tell them I had but the blood test is not accurate, it doesn’t quite cut it… you know the story.

    • Hi Karin! I’m going to take the DNA test on 23 and Me. It will tell you if you carry the gene for celiac disease. For me, that will be proof enough. I certainly know how you feel about having proof, but we already know that we feel better now that we made the connection and have eliminated gluten from our diet. Best of luck.


  5. Excruciating abdominal pain and bloating that lasted 4 to 5 days. Sometimes a rash and fever.

  6. I had what I thought was rotator cuff injury, couldn’t raise my right arm or twist it around to back…very painful,,,,went on for over a year,,,,
    Then, my son, age 44, developed the same symptoms in both shoulder areas, couldn’t use his arms, very scary.
    Online, I noticed a picture of bilateral inflammation in the shoulders on a site that listed gluten intolerance as one of the causes. So last fall we both went on strict gluten-free diets, and the pains for both of us was gone in about 6 weeks. We are staying on this diet.

  7. My symptoms were subtle and gradual. Around the age of 12, I developed Dermatitis Herpetiformis on the backs of my arms, and on my thighs. Around the age of 16, I started having painful trapped gas. Around the age of 50, I started getting diverticulitis, painful joints, abnormal thyroid tests, shooting pains in my fingers and toes, brain fog, stomach ache every morning, GERD, excess phlegm, headaches, very bad smelling stools, Dermatitis Herpetiformis near my hairline and on my spine, as well as on my arms and legs, gluten ataxia. I felt like I was falling apart. I had been to the doctor regarding some of my symptoms, but he didn’t pick up on the signs. After speaking with a co-worker about my symptoms, she told me that her granddaughter had celiac disease and the symptoms sounded like hers. I made the decision to get off of gluten for a month to see if I felt any better. Within two weeks I was feeling back to normal. That was two years ago. It’s been an adjustment, but I feel SO much better now. It makes me ill to think back about when my symptoms started and how many years that I have been damaging my body with gluten. I have four other family members on my mom’s side of the family that have celiac disease or other autoimmune diseases.

  8. Gluten Free Chickadee

    I had bathroom issues for years, always after I’d eaten…I thought it was normal. But then about 4 years ago my day would start and by the time I ate/drank my breakfast my stomach would be so bloated I could barely stay in my pants comfortably. –Meanwhile, my youngest child was eating the strangest things, chalk, cement…Doc ran blood work, iron deficient anemic. She also mentioned this can go along with Celiac, so let’s scope him. Sure enough!! He had and so do all of my children. I stopped eating gluten and my bathroom problems and bloating have completely disappeared!! I have never been formally tested but when I have talked to the docs, I am the carrier (my husband tested negative) and I feel great, so I’m confiysaying I have Celiac as well.

  9. I would wake up in middle of night with my heart beating out of my chest I’m talking 150bpm…then I’d get so hot I had trouble breathing ..I would jump in the pool ….I’d freeze water into ice blocks to put my feet on to cool myself off..or throw freezing water over my head in middle of night …to finally ..start to burp and burp …until I would throw up …start shaking and be so exhausted I couldn’t stand up doctor ever figured out what was going on .diagnosis was always panic attacks .anxiety …anti depressants..and more pills was their solution and it did nothing …it kept getting worst the asthma symptoms..joint pain ..and the rashes … …weakness….endless colds … anemia…I finally paid a doctor who listened and did genetic testing ..
    .no more gluten in my life has resolved most of my issues . But it did leave a trail of damage on my body…I’ve found hidden gluten (flour) in places like grated cheese so it doesn’t stick together …and supposed plain rice ….it’s life altering for a family …but my nightmare is over ….now I’m in recovery….
    Wheat is the cheapest grain in the world…and causes so much damage…it took me 18 years to find my solution don’t ever give up…

  10. The main symptom I noticed was very painful gas pains in my stomach about 2 hours after I eat anything.

  11. Jolts at night up to 50….

  12. Where to start. My earliest recollection of being ill, throwing up because of food, is at age 7. Hardly halfway through a meal, and it’s a mad dash to the loo, with explosive diarea, agonising pain, fever, sweating and a very swolen abdomen. This continued throughout my life. My relationship with food has been hatefilled and extremely upsetting. I have all the symptoms. Then my son got it as well. Blood tests later, we were diagnosed with Celiac Disease. It has been a harrowing journey. Gluten free is not enough. We had to go fully certified organic. While my son’s pain went away, my pain continued. Problem? IBS as well. Once again I had to change my diet. No meat, Olive oil even or vegan cheeses either. My pain is gone. You have no idea what that feels like. I am a bit stronger every day. TIP* every day I drink Organic Hemp Seed Powder.’s loaded with Iron etc. Will also be including Baobab Powder from today. Please understand, if your pain/nausea persists you might very well have IBS as well, which is a Colon problem.

  13. Gordon mccallum

    Going to the toilet more lots more gas

  14. I had foul greasy Diarrhea. Once diagnosed, doctors said I was a text book example of what they understood celiac to be at that time.

  15. Dennis Hemingway

    30+ years ago, Chronic Diarrhea and Massive Weight Loss, 220 to 120. Flatlined while they were doing endoscopy. Now 30+ years later, Doing 95% better on a Strict Gluten Free Diet, Weight today at 189 in my 70’s.

  16. I had extremely painful small fiber peripheral neuropathy and was searching for an answer. Yes, going GF made a huge difference. I still have residual numbness but pain is gone and I also regained temperature sense in my feet. So many seemingly unrelated symptoms also disappeared or improved by living GF.

  17. My son had muscle and joint pain (entire body), abdominal pain (burning), reflux, brain fog, and headaches.

  18. Weight loss from diarrhea!

  19. Severe abdominal pain that never went away with headaches and nausea. I felt like I had the never ending stomach flu. They are still trying to help me feel better 6 years later! I still have pains and nausea and other stomach issues never stopped so the Dr’s diagnosed me IBS and Celiac.

  20. Poor memory recall

  21. Dark Broken blood vessels on my arms whenever I eat gluten. If I accidentally bump them, they bleed red blood profusely.

    March 31, 2023

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