Q & A

Q:  My Close Relative Has Celiac Disease. Should I Be Tested Too?

A:  Most likely, you'll need to be tested as well, especially if you have symptoms of celiac disease. These can range from digestive issues such as diarrhea and constipation to neurological problems such as migraine headaches, plus skin disorders and joint pain. People with celiac disease may also have infertility, osteoporosis, depression and thyroid dysfunction.

Q: What should people who have to eliminate gluten from their diet watch out for?

A: Be sure to eat healthy! Many gluten-free packed foods on the market are high in fat, sugar and salt, which taste good but aren’t good for you. Make sure there is enough fiber in your diet and that you’re getting enough vitamins, iron, copper and folic acid.  Unlike regular products such as breakfast cereals, gluten-free substitutes aren’t so fortified. Consult a nutritionist if you have questions. Ask your doctor. Join a local celiac support group.

Q: What do you think of doctors who counsel patients to eliminate gluten from their diet even when there is no indication it is a problem?
A:  The physician in me (Celiac expert Dr. Joseph Murray) can relate to the frustration that health practitioners and doctors feel when patients have symptoms that persist, so I can see why they would counsel people to try it. But as a scientist, I search for answers before making a call. I see a lot of patients who go off gluten, feel better for a few months and then their symptoms come back.  So several big issues concern me, including: Have these patients been tested for celiac disease? Maybe the problem isn’t with gluten. Maybe it’s an allergy to wheat or [an issue with] FODMAPs, small sugar-like molecules often found in fruits and some vegetables.  The thing is, if they don’t get tested, then we’ll never know.

Q:  My blood test for celiac disease came back negative, but I am still having symptoms. Is it possible that I still could have it? What should my next steps be?
A:  The symptoms and presentation of celiac disease can vary quite a bit from one person to another. Diagnosing celiac disease is not always a one-step process. It is possible that you could still have celiac disease, even if the results of an initial blood test are normal. Diagnosing celiac disease typically begins with blood tests.   If the blood test is not reliable, other blood tests need to be done or an upper endoscopy may need to be performed.  If it doesn't reveal any damage, then it’s possible your symptoms are being caused by another medical condition. It can be useful to seek care from a physician who specializes in celiac disease to further investigate the cause of symptoms. It may also be helpful to work with a dietitian, whether diagnosed with celiac disease or not. He or she can assess one's diet and identify changes that may help ease symptoms.

References:
Sparks, B. D., Nellis, B. B., & Williams, B. V. (n.d.). Mayo Clinic Q and A: Diagnosing celiac disease not always a one-step process. Retrieved November 23, 2016, from http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-celiac-disease-not-always-a-one-step-process/

Celiac Disease. (n.d.). Retrieved November 12, 2016, from https://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/celiac-disease/Pages/overview.aspx 

Levels of Severity, Treatment and Complications

Levels of Severity
Celiac disease severity depends on the length of  bowel affected

(changes begin in the duodenum, first part of the small intestine immediately beyond the stomach and leading to the jejunum, and extend distally- situated away from the point of attachment; the proximal- situated nearer the point of attachment- bowel is more affected)

image by Wikimedia


Severe celiac disease
Megaloblastic anemia (inhibition of DNA synthesis during red blood cell production)
Neurologic disease (associated with B12 deficiency)
Infertility (inability to reproduce by natural means)
Amenorrhea (an abnormal absence of menstruation)
Osteoporosis (loss of bone density)
Hypovitaminosis D (lack of Vitamin D)
neurologic disease (B12)

Infertility
Amenorrhea
Osteoporosis
Hypovitaminosis D

Mild celiac disease

Mild iron deficiency anemia (may not cause noticeable symptoms)
Folate deficiency (low level of folic acid in the body; a type of vitamin B)
     - Subtle symptoms:  fatigue, gray hair, mouth sores, tongue swelling, growth problems.
Iron deficiency (increased need for or a decreased absorption of/ or amount taken in)

Silent celiac disease
Asymptomatic (producing or showing no symptoms), but have
   - A positive serology (blood tests that look for antibodies in your blood)
   - Abnormal biopsy (tissue or cells have an unusual structure, shape, size, or condition)

Latent celiac disease
Positive serology only

   - no abnormalities on biopsy

Treatment of celiac disease
Complete avoidance of gluten
1. avoid foods containing wheat, rye, barley, farina, kamut, triticale, spelt
2. use only rice, corn, buckwheat, potato, soybean, or tapioca flowers
3. limit or avoid all milk and lactose
4. read all labels in processed foods
5. beware of gluten in food additives, emulsifiers, starchs, and flavoring

Treatment Recommendations
1. Use a team approach with motivated members
2. Registered Dietitian
3. Local Gluten intolerance chapters, patients, stores
4. National organizations
5. Internet sites

What to monitor while treating celiac disease

1.     IBS (Irritable Bowel Syndrome) like symptoms
2.     Anemia
3.     Failure to thrive
4.     Neurologic symptoms (brain Fog)
5.     Dermatitis manifestations  (inflammation of the skin characterized by itchiness, red skin, and a rash)

Complications of celiac disease
osteoporosis
short stature
chronic anemia
microscopic colitis (refers to two related medical conditions which cause diarrhea)
pancreatic insufficiency (inability to properly digest food due to a lack of digestive enzymes
            made by the pancreas)
lactose intolerance (decreased ability to digest lactose)

References:

(n.d.). Folate Deficiency. Retrieved November 12, 2016, from http://www.healthline.com/health/folate-deficiency

 Biopsy: MedlinePlus Medical Encyclopedia. (n.d.). Retrieved November 14, 2016, from https://medlineplus.gov/ency/article/003416.htm

Small intestine. (n.d.). Retrieved November 20, 2016, from http://commons.wikimedia.org/wiki/Category:Small_intestine  

Day to day self-management

First, a person should know what gluten is.

What is Gluten?

Gluten is the indigestible water-soluble protein containing, gliadins & glutenins, which are major components of wheat endosperm.  It is a source of nitrogen to wheat embryo.  The elasticity is good for bread, cookies, bagels, and pizza.

Foods that may contain gluten

-Ice cream

-nondairy creamer

-yogurt with fruit

-cocoa mix

-instant coffee/tea

-bouillon cubes

-soup mixes

-canned soup

-hot dogs/lunch meats

-mustard, ketchup

-tomato sauce

-peanut butter

-stamp/envelope glue

-communion wafers

For a comprehensive list, the FDA and CDF websites are good sources.

To address day to day self-management of celiac disease, the following is a helpful point of reference.

Get educated. Educate those around you — including family and friends — so they can recognize, acknowledge and support your efforts in dealing with the disease.

Follow your doctor's recommendations.  If you are diagnosed with celiac disease, it's necessary to maintain a totally gluten-free diet.

Read labels.  Packaged foods should be avoided unless they're labeled as gluten-free or have no gluten-containing ingredients.  They are many alternatives to becoming gluten free.  It will just take some time to get use to changing the way you shop, cook, and dine out.  If you are unsure if something is safe, don't hesitate to contact a  health care professional. 

Find a support group. It's helpful to know that you're not alone. You may find comfort in sharing your experience and struggles and meeting people who face similar challenges. Organizations such as the Celiac Disease Foundation (www.celiac.org) Gluten Intolerance Group (www.gluten.org), the Celiac Sprue Association (www.csaceliacs.org) and Beyond Celiac (www.beyondceliac.org) can help put you in touch with others who have had similar experiences and can understand what you're going through.

Participate. September 13 is National Celiac Awareness Day, a day to highlight the increased awareness of a disease that affects almost 3 million people. Celiac disease is an inherited digestive system disorder caused by an intolerance to gluten that affects the digestive process of the small intestine.  If there are no activities near you, then bring celiac awareness to your area. 

References:

Celiac Disease - National Library of Medicine - PubMed Health. (n.d.). Retrieved October 18, 2016, from https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024528/

Mayo Clinic Staff Print. (2016). Celiac disease. Retrieved November 20, 2016, from http://www.mayoclinic.org/diseases-conditions/celiac-disease/manage/ptc-20214637

Facts and Statistics About Celiac Disease

Facts

1.  It is not an allergy
2.  It is lifelong, but treatable with diet changes
3.  Can present in children or adults

4.  It is genetic
5.  Gluten itself does not make us fat, lifestyle choices do. Wheat has not been genetically modified    to make us fat. It is the number of calories we consume that makes us fat
6.  20 ppm of gluten is the amount of gluten the FDA allows in a product labeled gluten free
7.  Breathing in gluten is similar to ingesting it.  Working with flour would be challenging. 
8.  Gluten cannot be absorbed through your scalp or skin
9.  Coffee and corn are both gluten-free
10.  There are no pharmaceutical treatments or cures for celiac disease
11.  A 100% gluten-free diet is the only existing treatment for celiac disease today

 Statistics

1. Reported incidence increased greatly in the 1960's

2. Often appears at age of weaning (1-3 years) and second peak 3rd or 4th decade

3. incidence of Celiac Disease in the U.S. is as high as 1:125

4. Ireland 1 in 300, Italy 1 in 250, Great Britain, N. Europe 1 in 400 to 2000

5. Rare in Japan and Southeast Asia

6. Highest percentage of celiac disease by ethnicity

Irish/ Celtic descent

Northern Italian

African American

Saharawi Arab

Laplander Norwegian

7. HLA DQ2/HLA DQ8 -Present in 95% of CD *see reference below on genetic testing
8.  83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions
9.  6-10 years is the average time a person waits to be correctly diagnosed
10.  5-22% of people with celiac disease have an immediate family member (first degree relative) who also has celiac disease
11.  The celiac disease diagnosis rate may reach 50-60% by 2019
12.  Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015

In regards to family genetics

·       Families with at least one diagnosed celiac, first-degree relatives (parents, children and siblings) carry at least a one-in-22 chance of also having the condition
·       Second-degree relatives (aunts, uncles, nieces, nephews, grandparents, grandchildren or half-siblings) carry at least a one-in-39 chance of having it
·       Several influential groups, including the American Gastroenterological Association and the World Gastroenterology Organization, call for all first-degree relatives of people with celiac to be tested themselves. Both groups also recommend testing for second-degree relatives; even though those more distant relatives don't carry as high a risk; many families have two or more cousins with the condition.





References:

Lewey, D. S. (n.d.). Celiac Disease Genetics - Celiac.com. Retrieved October 23, 2016, from http://www.celiac.com/articles/21628/1/Celiac-Disease-Genetics/Page1.html

Celiac Disease: Fast Facts. (n.d.). Retrieved October 28, 2016, from http://www.beyondceliac.org/celiac-disease/facts-and-figures/

Fast Facts - Celiac Disease - Celiac Disease Foundation. (n.d.). Retrieved October 23, 2016, from https://celiac.org/fast-facts-celiac-disease/

H. (n.d.). My Close Relative Has Celiac Disease. Should I Be Tested Too? Retrieved November 4, 2016, from https://www.verywell.com/celiac-disease-testing-p2-562734

An Intro to Celiac Disease

Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine.  It is estimated to affect 1 in 100 people worldwide.  Two and one-half million Americans are undiagnosed and are at risk for long-term health complications. It is not always recognized because the symptoms can be mild and can be wrongly blamed upon other common intestinal issues. Celiac disease can be diagnosed at any age. Children generally develop symptoms only after they start eating foods that contain gluten. Common symptoms include:


Image: beyondceliac.org
Celiac disease damages the villi of the small intestine and interferes with absorption of nutrients from food.

Other names include: 

Sprue
Non Tropical Sprue
Celiac Sprue
Gluten Sensitive Enteropathy

Although 1.1 million Americans are affected by celiac disease, on 90,000 exhibit classic symptoms. 



























Image by: glutendude.com



In children, common symptoms include:
·        Upset stomach
·        Failure to grow normally (often called "failure to thrive") or delayed growth
·        Weight loss
·        Painful abdominal bloating or distention
·        Pale, foul-smelling, greasy stools
·        Chronic (long-lasting) or recurring diarrhea
·        Irritability

In adults, symptoms may include:
·        Chronic diarrhea that does not get better with medication
·        Foul-smelling, greasy, pale stool
·        Gassiness
·        Recurring abdominal bloating
·        Weight loss
·        Fatigue
·        Infertility, lack of menstruation
·        Bone or joint pain
·        Depression, irritability or mood changes
·        Neurological problems, including weakness, poor balance, seizures, headaches, or numbness or tingling in the legs
·        Itchy, painful skin rash (dermatitis herpetiformis)
·        Tooth discoloration or loss of enamel, sores on lips or tongue 
   And Other signs of vitamin deficiency, such as scaly skin or hyperkeratosis (from lack of vitamin A), or bleeding gums or bruising easily (from lack of vitamin K)

The link provided below is from the Celiac Disease Foundation; providing a deeper look.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/

Need more of a visual understanding?  Watch this animated video.
http://www.thevisualmd.com/read_videoguide/?idu=1083610591&q=%20absorption&p=8

If you think you might have Celiac Disease………..

1.     Complete the symptoms checklist at https://celiac.org/celiac-disease/resources/checklist/

2.     Stay informed.  Join a mailing list, for up to date information, such as https://celiac.org/email-sign-up-form/

3.     Get Immediate Care. Find a doctor, dietitian or mental health professional.  The Celiac Disease Foundation provides a Healthcare Practitioner Directory that is a free listing of physicians, dietitians, mental health professionals and allied health providers in all 50 states, who treat patients with celiac disease and other gluten-related disorders. The Directory provides basic practice information and verification of valid license/registration. The Directory also lists if a practitioner is a CDF Medical Advisory Board member, practices at a Celiac Disease Center or has Continuing Education in Celiac Disease. Read more at https://celiac.org/celiac-disease/resources/provider-directory/#yMyvjrC05hbu4mMo.99
. 

If you go undiagnosed, ignore symptoms, or disregard treatment (not apply changes), then the following may occur (but not limited to this list) and worsen over time:
           nutritional deficiencies

           weight loss

           osteoporosis

          dental enamel defects

          clotting problems

          gastroenterological cancers


References:

Celiac Disease Foundation. (n.d.). Retrieved October 13, 2016, from https://celiac.org/

Celiac Disease (Non-Tropical Sprue) Guide: Causes, Symptoms and Treatment Options. (n.d.). Retrieved November 19, 2016, from https://www.drugs.com/health-guide/celiac-disease-non-tropical-sprue.html