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Celiac disease misdiagnosed as CFS, IBS, etc etc ...


Senior Member
Here's the latest on celiac disease from the NIH. I didn't see a date on this article but this info has been on the web since at least 2007 because that's when I first found it.

I just copied this in so that those of us with tracking problems could read it easier.

FWIW. This article doesn't discuss non celiac gluten sensitivity but it can result in the some of the same problems as celiac disease. See www.theglutenfile.com for details ...


What is celiac disease?

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley.

Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms.

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villithe tiny, fingerlike protrusions lining the small intestine.

Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.

We see overweight celiacs in our support group all the time. Most doctors probably still don't realize this is possible since celiac was once thought to mean that all celiacs were thin or malnourished.

Celiac disease is both a disease of malabsorptionmeaning nutrients are not absorbed properlyand an abnormal immune reaction to gluten.

Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is genetic, meaning it runs in families.

Sometimes the disease is triggeredor becomes active for the first timeafter surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

I wanted to make sure those of you who's CFS started with a virus saw this. My CFS (nuerological problems, FM pain, etc etc) did too and it wasn't until 2005, that I discovered that I was a celiac.

What are the symptoms of celiac disease?

Symptoms of celiac disease vary from person to person. Symptoms may occur in the digestive system or in other parts of the body. Digestive symptoms are more common in infants and young children and may include

abdominal bloating and pain
chronic diarrhea
pale, foul-smelling, or fatty stool
weight loss

Irritability is another common symptom in children. Malabsorption of nutrients during the years when nutrition is critical to a childs normal growth and development can result in other problems such as failure to thrive in infants, delayed growth and short stature, delayed puberty, and dental enamel defects of the permanent teeth.

Adults are less likely to have digestive symptoms and may instead have one or more of the following:

unexplained iron-deficiency anemia
bone or joint pain
bone loss or osteoporosis
depression or anxiety
tingling numbness in the hands and feet
missed menstrual periods
infertility or recurrent miscarriage
canker sores inside the mouth
an itchy skin rash called dermatitis herpetiformis

People with celiac disease may have no symptoms but can still develop complications of the disease over time.

Long-term complications include malnutritionwhich can lead to anemia, osteoporosis, and miscarriage, among other problemsliver diseases, and cancers of the intestine.

I think this is why I haven't healed as well as others. Not that this is uncommon. We see very sickly celiacs in our support group all the time who are GF but not responding.

Why are celiac disease symptoms so varied?

Researchers are studying the reasons celiac disease affects people differently. The length of time a person was breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears.

Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear.

Symptoms also vary depending on a persons age and the degree of damage to the small intestine. Many adults have the disease for a decade or more before they are diagnosed. The longer a person goes undiagnosed and untreated, the greater the chance of developing long-term complications.

What other health problems do people with celiac disease have?

People with celiac disease tend to have other diseases in which the immune system attacks the bodys healthy cells and tissues. The connection between celiac disease and these diseases may be genetic. They include

type 1 diabetes
autoimmune thyroid disease
autoimmune liver disease
rheumatoid arthritis
Addisons disease, a condition in which the glands that produce critical hormones are damaged
Sjgrens syndrome, a condition in which the glands that produce tears and saliva are destroyed

How common is celiac disease?

Celiac disease affects people in all parts of the world. Originally thought to be a rare childhood syndrome, celiac disease is now known to be a common genetic disorder. More than 2 million people in the United States have the disease, or about 1 in 133 people.1 Among people who have a first-degree relativea parent, sibling, or childdiagnosed with celiac disease, as many as 1 in 22 people may have the disease.2

Celiac disease is also more common among people with other genetic disorders including Down syndrome and Turner syndrome, a condition that affects girls development.

1Fasano A, Berti I, Gerarduzzi T, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Archives of Internal Medicine. 2003;163(3):268292.


How is celiac disease diagnosed?

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. Celiac disease can be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, inflammatory bowel disease, diverticulitis, intestinal infections, and chronic fatigue syndrome.

As a result, celiac disease has long been underdiagnosed or misdiagnosed. As doctors become more aware of the many varied symptoms of the disease and reliable blood tests become more available, diagnosis rates are increasing.

Blood Tests

People with celiac disease have higher than normal levels of certain autoantibodiesproteins that react against the bodys own cells or tissuesin their blood.

To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA).

If test results are negative but celiac disease is still suspected, additional blood tests may be needed.

Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas.

If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.

Intestinal Biopsy

If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is performed to confirm the diagnosis.

During the biopsy, the doctor removes tiny pieces of tissue from the small intestine to check for damage to the villi.

To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the patients mouth and stomach into the small intestine.

The doctor then takes the samples using instruments passed through the endoscope.

Dermatitis Herpetiformis

Dermatitis herpetiformis (DH) is an intensely itchy, blistering skin rash that affects 15 to 25 percent of people with celiac disease.3

The rash usually occurs on the elbows, knees, and buttocks. Most people with DH have no digestive symptoms of celiac disease.

DH is diagnosed through blood tests and a skin biopsy. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy.

Both the skin disease and the intestinal disease respond to a gluten-free diet and recur if gluten is added back into the diet. The rash symptoms can be controlled with antibiotics such as dapsone.

Because dapsone does not treat the intestinal condition, people with DH must maintain a gluten-free diet.

The locations of DH isn't set in stone. I always get a few DH spots on my abdomen if I've eaten any gluten.


Screening for celiac disease means testing for the presence of autoantibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease.

However, because celiac disease is hereditary, family members of a person with the disease may wish to be tested. Four to 12 percent of an affected persons first-degree relatives will also have the disease.4

3Rodrigo L. Celiac disease. World Journal of Gastroenterology. 2006;12(41):65856593.


How is celiac disease treated?

The only treatment for celiac disease is a gluten-free diet. Doctors may ask a newly diagnosed person to work with a dietitian on a gluten-free diet plan.

A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvement begins within days of starting the diet.

The small intestine usually heals in 3 to 6 months in children but may take several years in adults. A healed intestine means a person now has villi that can absorb nutrients from food into the bloodstream.

To stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating even a small amount of gluten can damage the small intestine.

The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a persons age at diagnosis, some problems will not improve, such as short stature and dental enamel defects.

Some people with celiac disease show no improvement on the gluten-free diet. The most common reason for poor response to the diet is that small amounts of gluten are still being consumed.

Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers made with wheat.

And because many corn and rice products are produced in factories that also manufacture wheat products, they can be contaminated with wheat gluten.

Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People with this condition, known as refractory celiac disease, have severely damaged intestines that cannot heal.

Because their intestines are not absorbing enough nutrients, they may need to receive nutrients directly into their bloodstream through a vein, or intravenously. Researchers are evaluating drug treatments for refractory celiac disease.

The Gluten-free Diet

A gluten-free diet means not eating foods that contain wheat, rye, and barley. The foods and products made from these grains should also be avoided. In other words, a person with celiac disease should not eat most grain, pasta, cereal, and many processed foods.

Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods. They can use potato, rice, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat flour.

They can buy gluten-free bread, pasta, and other products from stores that carry organic foods, or order products from special food companies. Gluten-free products are increasingly available from mainstream stores.

Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can freely eat these foods. In the past, people with celiac disease were advised not to eat oats

New evidence suggests that most people can safely eat small amounts of oats, as long as the oats are not contaminated with wheat gluten during processing.

People with celiac disease should work closely with their health care team when deciding whether to include oats in their diet. Examples of other foods that are safe to eat and those that are not are provided in the table.

The gluten-free diet requires a completely new approach to eating. Newly diagnosed people and their families may find support groups helpful as they learn to adjust to a new way of life.

People with celiac disease must be cautious about what they buy for lunch at school or work, what they purchase at the grocery store, what they eat at restaurants or parties, and what they grab for a snack.

Eating out can be a challenge. When in doubt about a menu item, a person with celiac disease should ask the waiter or chef about ingredients and preparation or if a gluten-free menu is available.

Gluten is also used in some medications. People with celiac disease should ask a pharmacist if prescribed medications contain wheat. Because gluten is sometimes used as an additive in unexpected productssuch as lipstick and play doughreading product labels is important.

If the ingredients are not listed on the label, the manufacturer should provide a list upon request. With practice, screening for gluten becomes second nature.

A lot of us are finding that even the certified GF oats are causing digestive issues. IMHO, I'd forget about replacing your old crap foods with new crap foods and look for healthier foods ...

New Food Labeling

The Food Allergen Labeling and Consumer Protection Act (FALCPA), which took effect on January 1, 2006, requires food labels to clearly identify wheat and other common food allergens in the list of ingredients. FALCPA also requires the U.S. Food and Drug Administration to develop and finalize rules for the use of the term gluten free on product labels.

This falls short of the GF requirements we celiacs need. The FDA hasn't come up with what it considers an allowable gluten content for foods labelled GF. I just completed an FDA survey on this last month.

Points to Remember

People with celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley.
Untreated celiac disease damages the small intestine and interferes with nutrient absorption.
Without treatment, people with celiac disease can develop complications such as osteoporosis, anemia, and cancer.
A person with celiac disease may or may not have symptoms.
Diagnosis involves blood tests and, in most cases, a biopsy of the small intestine.
Since celiac disease is hereditary, family members of a person with celiac disease may wish to be tested.
Celiac disease is treated by eliminating all gluten from the diet. The gluten-free diet is a lifetime requirement.
A dietitian can teach a person with celiac disease about food selection, label reading, and other strategies to help manage the disease.

Hope through Research

The National Institute of Diabetes and Digestive and Kidney Diseases conducts and supports research on celiac disease. Researchers are studying new options for diagnosing celiac disease, including capsule endoscopy. In this technique, patients swallow a capsule containing a tiny video camera that records images of the small intestine.

Several drug treatments for celiac disease are under evaluation. Researchers are also studying a combination of enzymesproteins that aid chemical reactions in the bodythat detoxify gluten before it enters the small intestine.

Scientists are also developing educational materials for standardized medical training to raise awareness among health care providers. The hope is that increased understanding and awareness will lead to earlier diagnosis and treatment of celiac disease.

Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research. For information about current studies, visit www.ClinicalTrials.gov.

For More Information
American Celiac Disease Alliance
2504 Duxbury Place
Alexandria, VA 22308
Phone: 7036223331
Email: info@americanceliac.org
Internet: www.americanceliac.org

American Dietetic Association
120 South Riverside Plaza, Suite 2000
Chicago, IL 606066995
Email: hotline@eatright.org
Internet: www.eatright.org

Celiac Disease Foundation
13251 Ventura Boulevard, #1
Studio City, CA 91604
Phone: 8189902354
Fax: 8189902379
Email: cdf@celiac.org
Internet: www.celiac.org

Celiac Sprue Association/USA Inc.
P.O. Box 31700
Omaha, NE 681310700
Phone: 1877CSA4CSA (2724272)
Fax: 4026434108
Email: celiacs@csaceliacs.org
Internet: www.csaceliacs.org

Childrens Digestive Health and Nutrition Foundation
P.O. Box 6
Flourtown, PA 19031
Phone: 2152330808
Fax: 2152333918
Email: mstallings@naspghan.org
Internet: www.cdhnf.org

Gluten Intolerance Group of North America
31214 124th Avenue SE
Auburn, WA 980923667
Phone: 2538336655
Fax: 2538336675
Email: info@gluten.net
Internet: www.gluten.net

National Foundation for Celiac Awareness
224 South Maple Street
Ambler, PA 190020544
Phone: 2153251306
Email: info@celiaccentral.org
Internet: www.celiaccentral.org

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
P.O. Box 6
Flourtown, PA 19031
Phone: 2152330808
Fax: 2152333918
Email: naspghan@naspghan.org
Internet: www.naspghan.org

The Celiac Disease Awareness Campaign

To meet the need for comprehensive and current information about celiac disease, the National Digestive Diseases Information Clearinghouse (NDDIC), a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), launched the Celiac Disease Awareness Campaign.

The Awareness Campaign is the result of the combined ideas and efforts of the professional and voluntary organizations that focus on celiac disease, along with the NIDDK, the National Institutes of Health, and the Centers for Disease Control and Prevention.

Visit www.celiac.nih.gov to learn more about the Awareness Campaign.

You may also find additional information about this topic by visiting MedlinePlus at www.medlineplus.gov.

This publication may contain information about medications. When prepared, this publication included the most current information available. For updates or for questions about any medications, contact the U.S. Food and Drug Administration toll-free at 1888INFOFDA (18884636332) or visit www.fda.gov. Consult your doctor for more information.


National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 208923570
Phone: 18008915389
TTY: 18665691162
Fax: 7037384929
Email: nddic@info.niddk.nih.gov
Internet: www.digestive.niddk.nih.gov

The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1980, the Clearinghouse provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public. The NDDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases.

Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts. This publication was reviewed by Ciaran Kelly, M.D., Beth Israel Deaconess Medical Center; Mitchell Cohen, M.D., Cincinnati, Childrens Hospital Medical Center; Walter Reed Army Medical Center; National Foundation for Celiac Awareness; Celiac Disease Foundation; Celiac Sprue Association/USA, Inc.; and Centers for Disease Control and Prevention staff.

The gluten-free diet chart was reviewed by Alice Bast and Nancy Dickens, National Foundation for Celiac Awareness; Cynthia Kupper, R.D., C.D., Gluten Intolerance Group; and Elaine Monarch, Celiac Disease Foundation.

This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired.


Senior Member
Thanks for that xchoc. After excluding first gluten and then all grains from my diet, I see that I have had this condition all of my life and I think it is the underlying reason why for example I caught Lyme from a tick bite when healthy immune systems may fight it off, why a pesticide exposure affected me so badly and why I have not been able to detox mercury from my system.

When I went gluten free I was using those gluten free bread products but once I saw that rice was also a problem, I stopped all grains and this was a good move because the foods I am eating are nutrient dense and more natural in fact nearly a raw diet and I have improved so much more quickly so that I have about 4X the energy and am feeling so much better instead of that drugged heavy feeling. I don`t think it is good to use those products as all flours are like glue in the system and we want to get the villi healed as soon as possible and not keep the system clogged up.

I know now that it is hereditary and my mother had autoimmune problems - arthritis, osteoporosis, Sjgren’s syndrome and IBS and members of the family also had mental health problems. My sisterand brother had autoimmune problems and my children. Some of the problems I had for as long as I can remember like lumpy painful breasts and foul stools and constipation have suddenly gone which amazes me. I did improve a lot on a macrobiotic diet but was still having gluten now and again in the form of seitan. Now I am 100% free of it but it took some time to get here.

So rather than think that it is misdiagnosed as ME I htink that it is the underlying cause for a number of people. Not sure how much healing can take place once it is excluded, but the human body is amazing in its ability to heal once the underlying reason stopping it is taken away.


Senior Member
Thanks xchocoholic for this comprehensive thread.

I came across this link elsewhere here yesterday but too brain fogged to remember where.

Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia

Dr M Hadjivassiliou MRCP a , RA Grnewald DPhil a, AK Chattopadhyay MD b, GAB Davies-Jones MD a, A Gibson PhD a, JA Jarratt FRCP b, RH Kandler MD b, A Lobo MD d, T Powell FRCR c, CML Smith FRCPath


Some individuals with genetic susceptibility to the disease have serological evidence of gluten sensitivity without overt gastrointestinal symptoms or evidence of small-bowel inflammation. The sole manifestation of disease in such patients may be ataxia.


Senior Member
Thanks Brenda,

So rather than think that it is misdiagnosed as ME I htink that it is the underlying cause for a number of people. Not sure how much healing can take place once it is excluded, but the human body is amazing in its ability to heal once the underlying reason stopping it is taken away.

I totally agree with this, I was just using the words the NIH used. Isn't it also amazing how our bodies can adapt to being poisoned continously by gluten and still function at any level ? And how we can "function" on such low nutrient levels ? Makes me wonder how well most of us are actually "functioning" ... I'm happy to hear that this is working for you.

Thanks girlinthesnow,

You may have found that at www.theglutenfile.com ... Cara has been working for years to maintain a record of all the studies she's found on gluten. She's one of the ones who helped me figure this all out too.

Ataxia is just one of the many nuero problems that have been found to be caused by gluten. Dr. Hadjivassiliou proved that gluten could damage the brain causing gluten ataxia though ...

Here's a book that may help some of you understand this better. The author of "Recognizing Celiac Disease" was recently at my support group and gave a lecture on copper deficiency. Here's a link to her book ... I didn't buy it because I have a good understanding of how this works now but I looked on line and it has some good references. I think I saw it cheaper too ...


I thought "The G-Free diet" diet by Elisabeth Hasselbeck was good though. If you want to learn more about leaky gut, any of the books by DAN (Defeat Autism Now) authors are good. "Healing the 4 A's" comes to mind ...

TC ... X