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Evangeline

Sleeping 23 Hours A Day...

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Hi all,

I have a sibling with severe Celiac Disease. I never had any of the classic symptoms but have always suffered with horrible bouts of canker sores, oily hair and acne while growing up. The acne has only worsened these last 14 years since puberty.

Other than that I was sailing through life, at least until four years ago. I experienced an EXTREMELY stressful situation. Within 4 months, I became more and more sleepy and insanely irritable. I had to drop out of college because I was too weak to walk to school. I began sleeping 23 hours a day, only able to use the bathroom or eat. Sometimes, I would lose my appetite for 3-12 days. Sleeping like this has continued these last 4 years and I've seen about 10 different doctors and had competed 20 different blood tests. They didn't find anything that would cause me to sleep 23 hours a day so they said it was in my head. I was given the Celiac blood test but it was negative (it was also negative for my sibling with severe Celiac Disease). I was taking up to 40 vitamins a day, yet one doctor said I was suffering from malnutrition, but she couldn't figure out why.

Because I never experienced the classic symptoms of Celiac Disease (bowel problems, etc.), I never thought the cause could be Celiac Diseae. I did, however, develop these atypical Celiac Disease symptoms:

Low white blood cell count

Liver Enzymes, elevated

Anemia, Iron

Hypoglycemia

Hyperprolactinemia (elevated prolactin hormone)

Anorexia (Poor appetite)

Loss of Vitality

Easy Bruising (Ecchymosis)

Leaky Gut Syndrome

Malabsorption of Nutrients

Pancreatic Insufficiency

Anxiety

Chronic Fatigue Syndrome

Depression

Headaches

Inability to Concentrate

Loss of Memory

Weak stomach acid

I suspect I was a latent Celiac and developed a severe intolerance for gluten because of the stressful situation.

So, my question: Has anyone heard of a Celiac sleeping 23 hours a day? The fatigue was indescribable.

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Are you sure you're not a cat? We have one who seems to sleep more than 20 hours a day. :P

Due to malabsorption, anemia and fatigue are common symptoms of celiac disease. Your case sounds more severe than average, but this is a disease that wears many disguises.

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Because I never experienced the classic symptoms of Celiac Disease (bowel problems, etc.), I never thought the cause could be Celiac Diseae.

Hi Evangeline, glad you found us :)

Actually, many of your symptoms are symptoms of Celiac--I had 13 of them myself. Although it's common, people don't always present with digestive problems. Things like anemia, depression, headaches can also tip you off to the possibility of Celiac. Elevated liver enzymes is another symptom, and many find that after they're on the gluten-free diet for a while, the levels go back to normal.

While sleeping for 23 hours a day is pretty extreme, fatigue is a huge symptom.

Have you tried going gluten-free?

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Many of your symptoms really aren't atypical. You're in good company. :)

I had extreme fatigue also. I didn't sleep 23 hours a day, I might have tried to though. I slept a lot and never felt like I was actually rested. I also had terrible headaches almost daily, and a couple others. People (and doctors) often think that unless your symptoms are gastrointestinal in nature that you cannot have celiac; however, this is not the case. Celiac can affect any body system, and does not have to cause GI symptoms.

As for the testing, it is unfortunately not always reliable. I tested negative, too, as did many others here. If you cannot get anywhere with formal testing, a positive dietary response cannot be argued with. So, when you are ready, give the gluten-free diet a try and see if it helps.

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Hi Evangeline.

Actually many of the symptoms you listed, if not most of them, are standard celiac signals. I experienced them and so did my uncle, my daughter and my sister-in-law. And yes, I was sleeping up to 20 hours a day when I was finally diagnosed. We have tracked mine down to onset 36 years ago, but I was not diagnosed until 5 1/2 years ago. Once a doctor recognized my symptoms instead of blowing them off, I tested high level positive labs followed by super positive endoscope.

A lot of people have false negatives, but with the amount of fatigue you are experiencing, I would assume an endoscope would show positive. Only true test is to eliminate gluten and see if the symptoms go away. Some of them do take a while to turn around. If you have a lot of damage, it could take 6 months to a year to heal. Some of those symptoms should turn around within 6 weeks or so though.

Best wishes to you!

Michelle

Western Washington State

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Hi all,

I have a sibling with severe Celiac Disease. I never had any of the classic symptoms but have always suffered with horrible bouts of canker sores, oily hair and acne while growing up. The acne has only worsened these last 14 years since puberty.

Other than that I was sailing through life, at least until four years ago. I experienced an EXTREMELY stressful situation. Within 4 months, I became more and more sleepy and insanely irritable. I had to drop out of college because I was too weak to walk to school. I began sleeping 23 hours a day, only able to use the bathroom or eat. Sometimes, I would lose my appetite for 3-12 days. Sleeping like this has continued these last 4 years and I've seen about 10 different doctors and had competed 20 different blood tests. They didn't find anything that would cause me to sleep 23 hours a day so they said it was in my head. I was given the Celiac blood test but it was negative (it was also negative for my sibling with severe Celiac Disease). I was taking up to 40 vitamins a day, yet one doctor said I was suffering from malnutrition, but she couldn't figure out why.

Because I never experienced the classic symptoms of Celiac Disease (bowel problems, etc.), I never thought the cause could be Celiac Diseae. I did, however, develop these atypical Celiac Disease symptoms:

Low white blood cell count

Liver Enzymes, elevated

Anemia, Iron

Hypoglycemia

Hyperprolactinemia (elevated prolactin hormone)

Anorexia (Poor appetite)

Loss of Vitality

Easy Bruising (Ecchymosis)

Leaky Gut Syndrome

Malabsorption of Nutrients

Pancreatic Insufficiency

Anxiety

Chronic Fatigue Syndrome

Depression

Headaches

Inability to Concentrate

Loss of Memory

Weak stomach acid

I suspect I was a latent Celiac and developed a severe intolerance for gluten because of the stressful situation.

So, my question: Has anyone heard of a Celiac sleeping 23 hours a day? The fatigue was indescribable.

Hi!

I had some of your symptoms as well, and my blood work was negative. My doctor followed his gut feeling (pun intended) and did an endoscopie. Please print this listing off and bring it to your doctor. Many of us aren't being diagnosed by blood test alone.

Best of luck,

Paula

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