Celiac Disease, Celiac Disease Symptoms

Celiac Disease – The Mystery Disease That Affects Millions

13 Comments 31 March 2009

The symptoms can range from what may seem like insignificant ailments such as headaches, diarrhea, reflux, lactose intolerance, and abdominal pain and bloating to more significant signs of malabsorption, which can manifest itself as weight loss, anemia, assorted autoimmune disorders, depression and malignancies.

The elusive culprit behind these varied discomforts is celiac disease and international studies show that 1 out of 100 people have it. This means that nearly 3 million Americans are affected and sadly only 3% have been diagnosed. Celiac disease is a genetic autoimmune disease that is triggered by the ingestion of gluten- the protein found naturally in wheat, rye, and barley. Even trace amount of gluten can flatten the villi in the intestines which will then lead to a variety of symptoms and if prolonged serious health complications that may include other autoimmune diseases.

Below is a tiered checklist of symptoms of celiac disease from the comprehensive book Celiac Disease –A Hidden Epidemic. (Peter H.R. Green, MD and Rory Jones 2006: Back cover)

I. Check each symptom you have had at least once a week during the past three months:
– Bloating, gas, and/or stomach cramping
-diarrhea or runny stools
-Joint pain or numbness or tingling in your extremities
-Itchy Skin lesions
-Constant unexplained fatigue
-Frequent headaches or migraines

II. Check if you have had or been diagnosed with any of the following:
-Irritable bowel syndrome
-Eczema or unexplained dermatitis
-Chronic fatigue syndrome
-Nervous stomach (non-ulcer dyspepsia)

III. Check if you have any of the following:
-Lactose intolerance
-Osteopenia and/or osteoporosis
-Autoimmune disorders (thyroid disease [hypo/hyper], type 1 diabetes, Sjogren’s syndrome, chronic liver disease) or an immediate family member with an autoimmune condition
-Peripheral neuropathy
-Non-Hodgkin’s lymphoma
-Small intestinal cancer
-Psychiatric disorders or depression
-Anemia (iron deficiency)

Checking one or more lines in section I and II and having any of the illnesses listed in section III warrants a personal and medical investigation to rule out or confirm celiac disease.

Before you try to alleviate any of the above symptoms by trying out a gluten-free diet, it is important for you to get a professional diagnosis of celiac disease. Prematurely trying a gluten-free diet before getting tested for antibodies to gluten will skew your test results. It is important to get tested while you have been eating gluten in order to have accurate tests. Antibody tests will be followed up by an endoscopy and biopsy, which is considered the gold standard for a diagnosis of celiac disease within the medical community. If you have a negative antibody test, but suspicion of celiac disease is still high, a biopsy may still be performed.

In the recent past the American medical community has lagged behind many other countries in regards to understanding that celiac disease is not as rare of a disease as once taught in medical schools. Fortunately, and most likely due to the efforts of the press and the high profile work of foreign medical pioneers, such as Dr. Peter Green of the Celiac Disease Center At Columbia University and Dr. Alessi Fasano of the University Of Maryland Center For Celiac Research, the mysterious symptoms of celiac disease are finally becoming more recognizable to physicians within the United States. Be sure to find a gastroenterologist that is familiar with celiac disease and has actually diagnosed the proper ratio of patients with celiac disease.

There is no cure for celiac disease. The good news is that it can be treated with a gluten-free diet and the health of most patients will be restored once they completely eliminate gluten from their diet.

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Your Comments

13 Comments so far

  1. 1
    Jessie Fong says:

    Hi. I have been living gluten gree for more than 2 years. When I was tested, I already was living gluten free. So when the negative antibody came back, I was told I was not celiac. Elated, I went and ate a hot dog bun! I was so sick after that, for more than 2 weeks. It was horrible! I went back to gluten free and have done so since then. Occasionally, I accidentally have gluten, and I feel the effects pretty immediately. How can I be tested for celiac if I don;t want to go back to gluten? It’s horrible to feel gluten intoxicated to get an accurate test. Please advise. Thanks, Jessie F.

  2. 2
    Susan says:

    I would have to pay for much of the testing since only having medicare and having no other insurance. Fat chance of that on my limited income. It’s so sad because I believe this has been a problem for me all of my life. From birth I have had much constipation and since age 5 can remember being depressed–no joke : (. Depression is my diagnosis for SSA. No wonder when the doctors are diagnosing depression one of the questions on the forms you fill out asks if you have stomach problems. The only way I would be able to know for myself is to give up all gluten and see what happens since money is tight and doctors are now asking for upfront money to treat people. It’s not fun and games for many who, unlike these bloggers that travel and worry about what or how to approach restuarants and their chefs, would make it appear. I kind of resent their saying one MUST be accurately tested.

  3. 3

    Not engaging in unprotected sex will greatly reduce the likelihood of infection with HBV. While the risk of sexual transmission of HCV is rare, protected sex is recommended if a person engages in anal sex, has multiple sexual partners, has ­frequent prostate infections, has open cuts or sores on the genitalia, or is menstruating. People with hepatitis B or C should avoid sharing anything that may contain even the tiniest amount of their blood, including toothbrushes, razors, and nail clippers.

  4. 4
    Wayne says:

    I had always heard only adults with celiac, like aunts and uncles. But wow have we found out how children from such a young age can have celiac disease too but many times you think its ADHD, ADD, etc. With our son, he went from an extremely calm easy-going child to something very aggressive and angry. Due to my wife’s education, we tried a kinesiologist and pinpointed he had celiac. Since then we have changed his diet and the calm child is back! You can read a could of my posts about our ordeal on our website/blog ( http://www.caringformyhealth.com ).

  5. 5
    Elizabeth says:

    Hi All,

    I just discovered this website and think it is great! My brother and niece have been diagnosed with celiac. We also have other autoimmune diseases in the family including diabetes and vitiligo (of which I have a moderate case). I have always been very thin (120 lbs at 5’9″), low energy, and constipated (with floaty stools–sorry too much information). I cut back on gluten for about 10 days and felt much better. I then realized that I needed to have gluten in my diet for the antibody test to be accurate. I then went to a party and ate cake and crackers and all sorts of gluten filled things and promptly spent the next day in bed (hard to do with two toddlers) dizzy and very faint feeling with no energy at all. If I have celiac I would like a proper diagnose so I can start to feel better, were my 10-days off gluten enough to effect the test? Will it be enough to just have a little gluten a day to get a proper result? I felt so terrible yesterday, I would rather not go on a gluten bonanza. Do my symptoms sound like celiac? Just want to start feeling better . . . Thank you so much for your time and responses! Sincerely, Elizabeth

  6. 6
    Anita says:

    Have recently decided that I am at least gluten sensitive. I don’t want to bother with tests, so I tried eliminating gluten and felt better. Then I reintroduced gluten and what a difference! I have had digestive problems for as long as I remember and depression almost as long. Now I am hunting for every bit of information I can find – including recipes. Thank you so much for this website!

  7. 7
    Sara says:

    I was diagnosed with celiac disease about a month ago. I am 44, and was having waves of severe upper abdominal pain, with a pain intensity comparable to labor pains. After 2 separate ER visits over 3 days, I was admitted to the hospital and received both an endoscopy and colonoscopy. The pathology report showed the beginning of atrophy of villi in my small intestine, and the blood work also indicated a very positive result pointing to celiac. I had been diagnosed at the age of 16 with hypothyroidism and a spastic bowel, and also avoided many foods that just seemed to ‘bother me’. I’m sure I have probably had this disease for some time…I wish I had known about the symptoms of this disease long ago.
    Going to a gluten-free diet has allowed me to eat again with out bloating and discomfort on a daily basis. The rash associated with celiac has been bothersome, but I’m hoping it will go away in the near future.

    Thank you for your website…it’s nice to not feel that I’m alone coping with this change in lifestyle.

  8. 8
    Michelle says:

    Can you add Texas for restaurant recommendations?
    Would be so helpful!

  9. 9
    Meg says:

    Olive Garden has a gluten-free menu 🙂 I was diagnosed with celiac in august 2011 and I have a blog. Check it out! http://the-gluten-freeks.blogspot.com/

  10. 10
    Маргарита says:

    Аз съм на безглутенова диета от три години. Диагнозата беше поставена с флуорисцентно изследване и хистология. Тъй като вече бях започнала диетата другите тестове показаха отрицателни резултати. Много искам след тези три години да повтора изследванията, но се страхувам да прекъсна диетата дори за един ден. Пих две таблетки диазепам, където като свързващо вещество се използва пшенично нишесте, аз го знаех, но реших да пробвам. Вече три седмици симптомите (при мен основно са кожни сърбящи обриви) не изчезват.Не знам как да постъпя. Освен тънкоревна биопсия друго не ми остава.


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Kelly Courson


Thanks for stopping by! I'm Kelly Courson and this is where I've shared my gluten-free finds since 2003. The world has been my gluten-free oyster for 14 years now and I love sharing what I've learned in order to help others adapt to a gluten-free diet. Have a look around and feel free to leave a comment. Connecting with people like you is what has kept me going this long! Seriously.

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