Patient Comments: Celiac Disease - Symptoms

The symptoms of celiac disease can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

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.

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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.

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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.

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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.

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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.

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Celiac Disease - Diagnosis Question: How was your celiac disease diagnosed?
Celiac Disease - Treatment Question: What kinds of treatment have you tried for your celiac disease?
Celiac Disease - Diet Question: Discuss the dietary changes you've made to manage your celiac disease. Has your condition improved?
Celiac Disease - Associated Diseases Question: What associated diseases do you have in concurrence with celiac disease?

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