Patient Comments: Celiac Disease - Symptoms

Question:

What symptoms have you experienced with celiac disease? Submit Your Comment

Comment from: seabreezebird, 65-74 Female (Caregiver) Published: November 12

I have many issues with my stomach, where I have pain, nausea and I sometimes throw up. I have also suffered in the past with terrible migraines and we both are diabetics. Yesterday, our oldest daughter was told she tested positive for celiac disease and that any living family members should be tested. I wonder if this runs in families.

Comment from: Qumail Rahoo, 0-2 Male (Caregiver) Published: June 28

My 7 year old son's symptoms of celiac disease were no gain in weight, general laziness, pale face, head ache, and constipation.

Comment from: Txakurrtepia, 45-54 Female (Patient) Published: June 24

I got my first migraine at two years old. My mother was told to ignore the hysterical child and take me home. At five one of my baby teeth came in abscessed. Many cavities followed. I broke both arms and my foot before I was ten years old. At eighteen I was diagnosed with asthma. When I reached the age of 30 I read an article about celiac disease and asked a doctor. He told me it used to be called failure to thrive and since I was thriving I did not have it. Thankfully I ignored him and went on a gluten free diet. I no longer have migraines or asthma. I am on vitamin D (50,000 IU a day) and after three years of this my fatigue has finally gone. I did not realize that celiac could have such an impact on one's life but I am so glad to be called the 'food Nazi' as I actually feel good.

Comment from: Foresthome, 55-64 Female (Patient) Published: October 15

I am 58 and recently had an esophogastroduodenoscopy, or EGD, and was diagnosed with celiac sprue. I am a nurse and began reading about the disease and now I am wondering if I have had it since birth. I was diagnosed with rickets, a form of malnutrition, as a toddler and began to suffer from migraine headaches as young as 6. When my permanent teeth came in the enamel had not formed correctly on many of them, resulting in having most of my teeth crowned. I also have chronic constipation, gas, bloating, fatigue, joint pain, and my stools have been difficult to flush, because they float, for as long as I remember.

Comment from: 45-54 Female (Patient) Published: December 11

I have Non-Hodgkin's lymphoma in my salivary gland, and as a routine staging procedure because of occasional acid reflux, I had an endoscopy to check for signs of lymphoma in my stomach. The doctor found signs of celiac disease in my small intestine and did a biopsy. My only symptoms are fatigue and weight loss. I am 41 years old and have been on a gluten-free diet for five days.

Comment from: stericthegtop, 55-64 Male (Patient) Published: February 03

With celiac disease I have fatigue, weakness, appetite for soft starches, as meats and sautéed vegetables cause chronic constipation.

Comment from: Judy, 55-64 Female (Patient) Published: December 11

I was diagnosed with IBS 22 yrs ago and I have been hospitalized three times with bad bouts of diarrhea and only told I had to learn to live with it. March this year I got an appointment to go for a scan and I casually asked the nurse attending why I was having this scan and she said to me that I was newly diagnosed with celiac disease which was news to me. Since I have been on a gluten free diet I have been feeling much better I have had a few setbacks, but nothing near like what I was like when I was undiagnosed. I just wished that I could have been told earlier and I could have had a better quality of life as I was often very ill.

Comment from: Arzola t, 55-64 Female (Patient) Published: December 11

With my celiac disease, I had heartburn, gas, and bloating, especially after eating pizza. I thought the pepperoni was the cause, so I would pick it off. However, I continued to experience the same symptoms. I took a lot of antacid tablets. After a couple of months, I began to experience abdominal pain and diarrhea. I mentioned it to my doctor, and she had my blood tested. When the results came back, she said I had a high celiac panel reading. She then referred me to a gastroenterologist. He mentioned a probability of having celiac sprue. He said a definitive answer would be reached by performing a biopsy of my small intestine. It came back positive for celiac sprue. I was diagnosed at the age of 58. I am now 61. It has been a challenge finding affordable restaurants that carry a gluten-free menu.

Comment from: 25-34 Female (Patient) Published: December 11

My symptoms at onset of the disease were loss of bone density, loss of muscle mass, 0% body fat, dermatitis herpetiformis, depression, muscle weakness, weight loss, diarrhea, daily vomiting, iron-deficient anemia, low calcium and vitamin D counts, B-12 and Vitamin K anemia, headaches, urticaria and fatigue. I was 21 when diagnosed, and had these symptoms for 6 years, escalating in severity. I was diagnosed by a collective team in the hospital after having full body muscle spasms that were mistaken for epileptic seizures. The gluten-free diet has cleared all of the symptoms and improved my overall mental and physical health!

Comment from: Tulipan, 45-54 Female (Patient) Published: September 05

I had intestinal symptoms for years and years (gas, diarrhea, abdominal cramping), but wasn't diagnosed with celiac disease until I broke out with dermatitis herpetiformis all over my body at about age 50.

Comment from: 25-34 Female (Patient) Published: August 21

Personally, I had no diarrhea, gastrointestinal symptoms or weight loss (I have a BMI of 30) and was not short in stature: all classic symptoms. Due to these factors, celiac disease was dismissed as a possibility for seven years while my symptoms worsened. My main symptoms at diagnosis were: extreme fatigue, dementia (brain fog), anemia, migraine, vertigo, peripheral neuropathies, nausea, anxiety, ataxia and bone pain. I would sleep 22 hours a day, I was too tired to chew food, I didn't have the strength to break the seal on a refrigerator, and I regularly soaked my sheets with night sweats. My celiac disease was confirmed with a small bowel biopsy. I've been on a strict gluten-free diet for five years, which has resolved my anemia, anxiety, peripheral neuropathies, severe dementia and migraine. An accidental ingestion of gluten results in explosive diarrhea, cramping, nausea, brain fog, anxiety, ataxia, vertigo, night sweats and bone pain. I still require an average of 12 hours of sleep, and fatigue is still a daily battle.

Published: July 23

20 years ago I was diagnosed with Hashimoto's disease--a hypothyroid disorder. 3 years ago I began to feel sick and developed what the gastroenterologist said was "oily stool". Other than that, after several tests, I was told it was just "your system" and I should just live with it. I continued feeling badly and having diarrhea all the time and eventually I developed severe tiredness. I was taking three naps a day and still feeling exhausted. I thought that this constant diarrhea was exhausting me. Finally I accidentally discovered a most reliable endocrinologist who, incidentally, was doing research on Celiac disease. I have now begun a gluten free diet and am on vitamins and regular inoculations of B12, folic acid, B complex and a couple more. It is his belief that Hashimoto's is directly related to this gluten intolerance. I feel so much better! It is early in my treatment but I notice a difference. I basically believe that most endocrinologists do not relate this to celiac disease. I am fortunate to have found someone who understands this. Also, my father had severe rheumatoid arthritis and my brother has diabetes--both autoimmune diseases.

Published: July 09

I have been having gut problems for about 6 years now my symptoms are sick every morning, sick after I eat solid food, bloating and severe stomach pain nausea and vomiting sometimes requiring hospitalization to stop vomiting and help with pain, diagnosed with gastroparesis, diabetes (insulin dependency) fibromyalgia, arthritis, glaucoma, have had Hysterectomy, now the latest Celiac? I am finding it hard to believe, I have chronic constipation and am fat, I can not lose weight no matter how little I eat or keep down. Blood work confirmed celiac disease.

Comment from: sidra, 3-6 Female (Caregiver) Published: May 28

My 3-year-old baby has celiac disease. It was last year that we found out. It's very difficult to keep away a child from the food that she likes. We hope one day there will be a medication for this disease. If anyone knows of something, please share!

Comment from: gc, 25-34 Female (Patient) Published: September 05

My first symptoms of celiac disease were anemia and abdominal bloating. As time passed, the bloating became worse and worse. It actually felt as if someone was inside my stomach and just kept pushing it out. I also had a lot of fluid retention, pitting edema, diarrhea off and on, thin stools, and eventually nausea. It was an awful feeling, and when I would have a bad attack, the only thing that helped was to lie on my stomach until it passed.

Comment from: 45-54 Male (Patient) Published: August 28

With my celiac disease, I experience unrelenting and disabling fatigue, quality of sleep issues, cognitive impairment, and proneness to respiratory infections. At one point, I was suffering a seizure while on a psychotropic medication: an outcome that celiac disease places one at greater risk of. I also had G.I. symptoms including peptic ulcer, pain, swelling of the hands, and hypothyroidism. In short, a whole bunch of symptoms that anyone trained in/believes wholly in "the medical model" would dismiss as necessarily unrelated but in these cases are wholly related under a unifying diagnosis, which very often may include an autoimmune disease diagnosis.

Comment from: Blue Eyes, 55-64 Female (Patient) Published: August 21

I was diagnosed with celiac disease five years ago. I am now 59. Since then, I have followed a gluten-free diet and have been symptom-free. However, during the last year, I have accidentally had some gluten and had no reaction. I tried to experiment with a little gluten here and there. I even had a hot dog (with bun) and a beer and again, did not have a reaction. Maybe I have a mild case of it?

Published: July 21

For years I battled very loose stool and or nausea after eating certain foods. Then the bloating started, gradually. I would wake up every morning with a flat tummy, but as the day went on...with each meal I ate, I would become more and more bloated. Sometimes the diarrhea would be watery and constant throughout the day. I was extremely tired by 2pm every day. Sometimes just felt out of sorts, loss of memory even. Doctor said I had all the signs of Celiac disease. I've been on the gluten free diet for 6 months and I'm a new person! I still deal with bouts of watery, discolored stool, but I'm also still learning where NOT to find gluten. It's just about in everything you find! By reading this article I've learned that the swelling of my hands and feet were also related to malabsorption.

Published: June 26

I have been taking Percocet for about two years as a pain killer for recovery from surgeries on my spine (spinal stenosis) and a rotator cuff surgery. It is common knowledge that this drug causes constipation and I have even noticed until recently that when I take my first dose in the morning it actually triggers my need to evacuate. Now I am having trouble going and Senokot and Metamucil have not helped as they have before. I have considered citrate of magnesium.

Published: June 10

I had severe fatigue, eye problems, and tingling in my hands and feet for several months. It made no sense as I am a fairly active, generally healthy woman. Then I developed pain and constant bloating in my upper abdomen and started becoming nauseated after eating. After I spent two days not eating due to nausea, I went to see a gastroenterologist. I had an endoscopy which found blunted villi and chronic inflammatory cells. Blood and genetic tests confirmed the diagnosis. I've been on the gluten-free diet for three months now. I'm back to my usual, active self. All the extra-intestinal symptoms have disappeared.

Published: June 09

My period stopped, I've had 3 in 6 years. I developed an unscratchable itch on my buttocks and outer vagina. My stomach started becoming distended at the top under my rib cage .It gets hard and there is discomfort. I feel nauseous and develop lower back pain at the onset of these symptoms. My eyes also become red or discolored. I alternate between diarrhea and constipation. Sometimes the symptoms stop for a week or two, then come back. During more serious outbreaks, I feel like I have the flu. Feverish, headachy, nauseous, tired, hollow feeling. I have a lot more gas than I used to. It's an awful thing to live with and I'm trying to modify my diet, which helps.

Comment from: booboo, 55-64 Female Published: September 05

I have two of the symptoms of celiac disease. I am a junk food junky. Weight loss is not one of my symptoms. I will pass on any celiac test. I am 55 years old. I refuse to follow a gluten-free diet.

Comment from: Cathy, 45-54 Female (Patient) Published: September 05

I was diagnosed with celiac disease a few years ago, after being rushed to the ER when my stomach nearly perforated. My dad also has the disease.

Comment from: jyoti, 65-74 Female (Patient) Published: August 28

I have just been diagnosed celiac disease. I suffer greatly from indigestion, lack of gas release, burning in chest, loose motion, heaviness in the abdominal area, nausea, etc.

Comment from: Stuffed UP, 65-74 Female (Patient) Published: August 14

I have not been diagnosed but have allergic responses when I consume wheat or foods containing gluten. My nasal passages swell as well as my wind pipe making it almost impossible to breathe. I also get dizzy, have poor balance, muscle weakness and leg cramps. I also feel bloated in my stomach often after eating even when I carefully avoid gluten. I have been diagnosed with sleep apnea and use a CPAP machine but often have to remove the mask due to my nasal passages swelling making it very difficult to breathe. I lack energy and my memory has been affected. I have had this problem for many years and I am now 70.

Comment from: Em, 25-34 Female (Patient) Published: August 05

I visited the doctor because I was simply feeling very tired all the time. I was very shocked to discover that I had celiac disease, as I had no other symptoms.

Published: July 01

My symptoms were severe pain or sensitivity in my stomach and uncomfortable gas and loose stools. I was also tired all the time.

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