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Readers Respond: What Were Your Main Celiac Disease Symptoms?

Responses: 26

By

Updated January 16, 2012

From the article: Celiac Disease Symptoms

Although diarrhea, fatigue and abdominal pain remain the most common celiac disease symptoms, the condition actually has more than 100 potential symptoms and associated medical conditions, some very common and some quite unusual.

In addition, it's not at all uncommon to have minor health complaints clear up once you go gluten-free. For example, when I started the diet, my lifelong, seriously annoying dandruff suddenly disappeared, my gums quit bleeding and my cuticles stopped peeling.

What were your main celiac symptoms? Also, what minor health complaints surprised you by disappearing on the gluten-free diet?

Tell Your Story

Celiac symptoms

I had most of member's symptoms, but mostly very painful nagging pain under right rib age. I haven't been officially diagnosed, although it's been suggested. I quit gluten 6 months ago, however; issues with lactose and other foods affect my digestion as well. Very seldom do I feel well for two days in a row.
—deera111

All of the symptoms

I have all of the symptoms listed on this website. I've had very bad bloating, cramps, IBS, constipation, gas, lactose intolerance, foods with wheat/gluten hurt my stomach. I've also notice that I've experienced lots of brain fog, I'm having trouble losing weight but yet I gain it so easily and I don't even eat a lot. I recently started to notice that if I eat foods without gluten I feel great so I probably do have celiac disease. And not to mention I have eczema and asthma, I have fatigue, am depressed and I get panic attacks. I took a blood test and it said that I don't have a celiac disease. My doctor told me to avoid foods with gluten or wheat anyway because she said that I didn't have any gluten inside of my body at the time of the test. So I'll probably take another test again. I've just decided to stay away from it because my body feels fine without gluten and I was honestly getting tired of having pain.
—Guest DeAndra

Sick of Doctors NOT listening

I have been on a myriad of physicians visits in the last year. Trying to get someone to work with me and put all the medical information that I've accumulated together so I can get an answer as to why I went from (seemingly) healthy to such immobility issues. Diagnosis': Gallbladder removal, Diffuse tendonitis disease, Ankylosing Spondylitis, Degenerative Disc Disease, Chairi 1 malformation, Chronic Fatigue Immunodeficiency disease, 65/6wk weight loss, Diarrhea/Constipation, Bloating/Cramping, Dizziness/Change in eyesight, Fibromyalgia, Early Menopause, Sleep issues, vascular issues, IBS?, Small fiber sensory neuropathy, muscle twitches and spasms, Swelling in hands, face, feet, depression/Anxiety, Brittle nails, eczema, allergies, skin eruptions, tinnitus, neck pain, and brittle nails. I started having some of these issues more than 6-7 yrs ago. My current Physician is checking into whether I have Celiac Disease at this moment.
—Guest Melody

Finally Diagnosed

I had been suffering for about 6yrs before finally getting a diagnosis from my gastro doctor. I started having the classic symptoms of fibromyalgia so I was originaly diagnosed with that but then this crazy itchy rash started popping up every quarter or so and then after several years of that I developed the digestional symptoms which finally lead to the diagnosis. It's been a long journey but I feel better gluten free although I still suffer from leg pain, I'm optimistic that this will eventually clear up.
—Guest Celiac Girl

Celiac all my life

I am 67. Have had Celiac all my life. It's nice to know that it's recognized as a real disease. It's been hard not to have any alternative foods. My biggest gripe is that gluten-free products are so expensive. I'm on a fixed income and can't afford what's available. I understand that the Atkins diet is about as close to gluten free as you can get.
—Guest Daisym0m

Any input??

I have been living through hell the last year...I've had every test possible ran and doctors still can't figure out what's going on...blood test for celiac came back negative but the doc says it's not that great of a test to rule out...my symptoms...panic attacks, anxiety, hair falling out, muscle aches, hand feet and head tingly, irritable, depression, vision changes, foggy headed, I feel like I'm going crazy, cold feet, bowel issues, mucous bowels, irritable, and the list goes on.....does anybody suffer anxiety with their celiac???
—Guest Aimee

my symptons

i've read all of the responses, i always believed i have celiac disease, i have a majority of the symptoms, i got a blood test done it came back negative but i'm not giving up as i'm still and have been suffering for yrs, my daughter of 18 was diagnosed a couple of years ago, i've read somewhere if your child has it that it had to have come from one of her parents is this true?
—Guest debbie mcallister

Cheating

Just a bite of this and a taste of that. Has put me back at the starting line, trying to figure out my symptoms and which doctor to go see. Insanity...to keep doing the same thing and expect different results. Thanks to all of you after reading the myriad of symptoms I realize celiac sprung a new leak in the dike bigger than ever since I tried to ignore it.
—Guest Patsy. 1935

Gluten Free

I have suffered from acne for years. When I started to get cystic acne I decided to cut out wheat as the culprit. I now live gluten free and my skin has cleared. However, sometime I slip up and get poisoned. When I eat gluten I feel like I've filled up with foam and get a migraine followed with severe vomiting. Does any one else experience the foam vomiting?
—Guest Estar

celiac

I was diganosed with celiac disease last year. All symptoms have completely resolved almost immediately on a gluten-free diet except when I've accidentally been contaminated. My prior symptoms included severe stomach pains, diarrhea, migraines, numbness in hands and legs, constant nausea and dizziness. I suffered for years before I was diagnosed.
—Guest suzie

Severe Cystic Acne, Depression

Self-Diagnosed despite negative blood tests and wary Doctor. Celiac specialist found genetic proof. Have been gluten free for 2 yrs and will never go back, recommend it to everyone I know. My urgent and last symptoms included brain fog, painful bloating, toxic gas, insomnia. After going gluten free, realized other symptoms over lifetime probably mean I've had it my whole life - severe, disfiguring acne, depression, chronic constipation, acid reflux, allergies and muscous issues, chronic cough. menstrual cycle acne also disappeared. If only I had known earlier, as someone stated above, my life could have been very different. Avoid gluten!!!
—Guest LateDiagnosis

An answer at last

When I was born, I was anemic. When I was a teen I got the itchiest rash you could ever imagine, that doctors gave me a steroid for which didn't help. I was diagnosed with ADHD as a child and given ritalin. When I got pregnant with my third child (7 years ago), I started with chronic diarrea and stomach pain so bad, I thought I was dying. I couldn't remember anything, I had zero energy, headaches, heartburn. Last year I was told I have diabetes and hypothyroidism, elevated liver enzymes, high blood pressure and high cholesterol. I have dry eyes to the point where I can't wear contacts and I have mucous in my stool at times. I got so tired of doctors telling me there's nothing wrong or how about this? One doctor in the emergency room told me I was literally "full of crap". That's what the X-ray showed. Well from that visit, I went to a gastroentorologist and thank goodness I did. She ran so many tests. Blood tests, a cat scan, a colonoscopy and finally an endoscopy. She found the celiac.
—Guest Cassie

Sick for years

Looking back I can now see that I was sick a lot longer than I thought. When I was a teen I had severe ab. pain and alternated between loose stools and constipation. My doctor told me that I had a "spastic colon" and I needed more fiber. That made me feel worse so I stopped and just lived with it. Eventually it went away. I was diagnosed with Sarcoidosis in my lymph system (about 7 years ago). I put on weight and became very weak. My hair began to fall out and it was all attributed to sarcoidosis. I started having joint pain and was told it was sarcoid related arthritis. I was diagnosed with diabetes, fatty liver disease and high blood pressure. Finally, a diagnosis. Yes, but I didn't feel much better. Then the loose stools came again. The doc said I was getting chronic stomach viruses. Hmm.. Moved back home and went to a rheumatologist who said I didn't have arthritis. Ran some bloodwork, tested pos. for CD and had the biopsy. No doubt, I had it. Been GF 2 weeks.
—Guest wsttxrose

My latest celiac 'episode'

I had gone undiagnosed for 30 years. Celiac has affected every one of my organs, including hair loss. Sunday night, as I lay naked on the bathroom floor, I felt that I was dying. My thought was, is this how they are going to find me? I was having uncontrollable sweats, along with being so cold. My face was bright red. My stomach between my sternum and bellybutton was so extended and HARD. My lower abdomen, intestines, were raging. Everything was so painful. Then there was the gagging, wretching and constant vomiting. I could not feel my arms and legs, they were just barely tingling appendages. The uncontrolable gas, and horrible tasting belches. I really did feel I had torn something internally. My temperature went to 101.8. I could not think properly. I had no control of my bodily functions. And the pain. So much pain. I went through this for hours. I did not eat the next day. Only slept because of the exhaustion. Tues was ok. Then another attack on Wed. I follow a gluten free diet.
—Guest Annie

The more I read...

Where do I start? I have had seemingly unrelated symptoms for so long I can't remember... I have depression, acid reflux, severe chronic "acne", IBS, insomnia and fatigue, aching joints and back, receding and bleeding gums, migraines, am severely overweight... do I go on? I'm on different drugs for everything too! I went on a low-carb diet years ago and all my symptoms disappeared, which I attributed to the low-carb... it seems glaringly obvious now that by cutting out bread and pasta products out of my diet, I was helping myself without knowing it. Anyway, last year, I got the worse itching skin condition ever, first diagnosed as scabies, but specialists are now more and more thinking herpetiformis, and we all know what that means, don't we? Waiting for blood tests to be carried out, but I already know in my heart, it all fits so well. Dreading giving up my favourite foods forever, but really hoping that it will give me back some quality of life as I feel awful day in day out.
—Guest bookie

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What Were Your Main Celiac Disease Symptoms?

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