14 Things That You Didn’t Know About Celiac Disease

Because celiac disease is NOT a fad

1. Celiac Disease is an Autoimmune Disease

That’s right. Celiac disease is not an allergy and it is also not a fad. Celiac disease is an autoimmune disease (examples of other autoimmune diseases are: type 1 diabetes, rheumatoid arthritis, and multiple sclerosis).

2. There Are Over 300 Known Symptoms of Celiac Disease

Celiac disease can be difficult to diagnose because it affects people differently. In fact, some people with celiac disease have no symptoms at all.

3. Digestive Symptoms Are NOT the Only Symptoms of Celiac Disease

Celiac disease symptoms also include: unexplained iron deficiency anemia, fatigue, bone or joint pain, seizures or migraines, depression, osteoporosis, and an itchy skin rash called dermatitis herpetiformis.

4. More People Have Celiac Disease Than Crohns, Colitis, and Cystic Fibrosis Combined

1 in 100 worldwide, or 3 million Americans have celiac disease.

5. Celiac Disease is Hereditary

People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in10 risk of developing celiac disease.

6. Left Untreated, Celiac Disease Can Lead to Additional Serious Health Problems

These include the development of other autoimmune disorders, including: Type I diabetes, multiple sclerosis (MS), osteoporosis, and gastrointestinal cancers.

Addison’s Disease     5 – 12 %                                       Autoimmune Thyroid Disease   2  --7%

Autoimmune Hepatitis   3 – 6 %                                     Crohn’s Disease   8.5%

Dermatitis Herpetiformis              25%                           Gluten Ataxia    10 – 12%

iIdiopathic Dilated Cardiomyopathy    5 – 7%               Juvenile Idiopathic Arthritis     2.5 – 7%

Microscopic Colitis  ….  4%                                           Multiple Sclerosis    11%

Peripheral Neuropathy  ….  9%                                      Primary Bilary Cirrhosis    3 – 7%

Primary Sclerosing Cholangitis  … 3%                          Psoriasis   4.3%

Scleroderma . . . 4%                                                        Sjogren’s Syndrome   4.5 – 15%

Type 1 Diabetes Mellitus   4%

7. Many People with Celiac Disease Report Having “Brain Fog”

Brain fog is a form of cognitive impairment that can encompass disorientation, problems with staying focused and paying attention, and lapses in short-term memory.

8. 83% of Americans with Celiac Disease Are Still Suffering Without a Diagnosis

With an estimated 3 million people in the U.S. affected by celiac disease, and less than 500,000 diagnosed, there is a critical need to raise awareness and funds for diagnosis, treatment, and research for a cure.

9. The Later the Age of Diagnosis, the Greater the Chance of Developing Another Autoimmune Disorders

Age of Diagnosis                               Chance of Developing Another Autoimmune Condition

2 –  4    years                                          10.5%

4 – 12                                                     16.7%

12 – 20                                                   27%

Over 20                                                  34%

10. It is Estimated That Up to 20% of People Diagnosed With Celiac Disease Have Persistent Symptoms While on a Gluten-Free Diet

There are several causes of poorly responsive celiac disease, including Small Intestinal Bacterial Overgrowth and Pancreatic Insufficiency.

11. Consuming the Smallest Amount of Gluten Can Make a Person With Celiac Disease Very Ill

Gluten is a general name for the proteins found in wheat, rye, barley, and triticale. Gluten helps foods maintain their shape, acting as a glue that holds food together.

12. Commonly, People With Celiac Disease Experience Several Nutritional Deficiencies

Common deficiencies among celiac disease patients include: iron, calcium, vitamin D, zinc, B6, B12, and folate.

13. 15-25% of People With Celiac Disease Are Also Affected by Dermatitis Herpetiformis

Dermatitis herpetiformis, also known as DH and Duhring’s disease, is the skin manifestation of celiac disease. Extremely itchy bumps or blisters appear on both side of the body, most often on the forearms near the elbows, as well as on knees and buttocks.

14. Celiac Disease Foundation Drives Diagnosis and Treatment of Celiac Disease Through Advocacy, Education, and Advancing Research to Improve the Quality of Life for All People Affected by Gluten-Related Disorders

Celiac Disease Foundation (CDF) is a 501 (c )(3) non-profit organization established in 1990. With vital programs and services for the public, patients, healthcare professionals, and the food industries, CDF meets the growing public health challenge of diagnosing and treating celiac disease and other gluten-related disorders.   www.celiac.org

Let's Talk Gluten Free

LET’S TALK GLUTEN FREE – CCA Yukon Support Group

The Canadian Celiac Association has a gluten free support group in the Yukon.

Contact us at ccayukon@gmail.com for more information.

Three million people in the United States live with celiac disease, according to the University of Chicago Celiac Disease Center. The autoimmune disorder, which causes damage to the small intestine when gluten is ingested, often gets misrepresented as a simple dietary restriction. But it’s not that simple.

The  Celiac Disease Foundation, decided to take an opportunity to spread some awareness about the often misunderstood condition. We asked readers affected by celiac disease what they wished others could understand about the condition. This is what they had to say.

1. “Just because you look fine on the outside doesn’t mean that you are on the inside.” — Lois

2. “We can still eat food. Not everything contains gluten. Just the nice food.” — Clare

3. “We are not choosing this for fun. It is serious and a medical necessity for us. We did not jump on the bandwagon for a new diet.” — Ali

4. “I wish people wouldn’t take it personally when you can’t eat their food. Even if they try to make something gluten-free, it’s likely contaminated by their cooking utensils, oven, grill or spices. I certainly appreciate it, but I always tell people not to go to the effort because I cannot eat it.” — Tara

5. “It’s more than a tummy ache when I ingest gluten.” — Sherry

6. “It’s not the same thing as a food allergy. It’s an autoimmune disease that affects every part of the body.” — Angela

7. “As hard as it is for adults with celiac to be around non-celiac people at a party or family event, it’s even harder for kids. My daughter is having to grow up feeling like she is missing out. Even family members don’t understand that when you eat fancy dessert in front of her and offer her some packaged gluten-free item in its place, it still makes her feel bad.” — Sara

8. “Flare-ups are unpredictable and can happen at any time.” — Mary Ellen

9. “We want to eat cake, trust us, but we can’t.” — Angela

10. “The financial impact can be a huge burden. Having no choice but to purchase food that is sometimes triple the cost of its non gluten-free counterpart isn’t always easy. You pay the price and get less food for your money.” — Wendy

11. “I’m not trying to be a flake. Sometimes I might have to cancel because my stomach hurts. It’s not like I planned on getting sick for 10 days straight…” –Marsha

12. “I’m not crazy.” — Tonya

14. “While I really don’t miss the things that made me sick and while I’ll never ask for special treatment, it would be pretty awesome if people tried a little bit every once in a while to include foods I can eat at special events. When it does happen I’m over-the-moon grateful for it.” — Karen

15. “No, my daughter won’t ‘grow out of it.'” — Jennifer

16. “You don’t have to have symptoms to have it.” — Sharalyn

17. “I actually gained weight after adopting a gluten-free diet… There is plenty of junk food that is also gluten-free.” — Yogi Samantha

18. “I go through a lot of toilet paper.” — Spencer Lee

19. “There is no pill that I can take to make it go away.” — Lisa

20. “Yes, that little teaspoon of flour you used to thicken the stew will make me sick. And no, I can’t just pick out the croutons.” — Alicia

21. “We are not just picky eaters.” — Annamaria

22. “Giving me gluten is the same as giving someone food poisoning. It is just as bad for me if not worse, because the effects are longer. While a mild case of food poisoning lasts a couple of days, for me it is a week or two.” — Hardly

23. “Gluten intolerance, or celiac, isn’t a fad diet.” — Annabella

24. “Gluten-free food isn’t as bad as you think.” — Madeleine

25. “Before you tell me who will be cooking our food, I need to know where the bathrooms are. And where the bathroom spray is.” — Henny

26. “Having to explain celiac and the seriousness of the disease to family and friends is challenging. When someone is talking about it, please try to be understanding.” — Yaya

Information provided by the Celiac Disease Foundation (CDF) which is a 501 (c )(3) non-profit organization established in 1990. With vital programs and services for the public, patients, healthcare professionals, and the food industries, CDF meets the growing public health challenge of diagnosing and treating celiac disease and other gluten-related disorders.