<<

Celiac Disease, Non Celiac Sensitivity, : What you Need to Know BCSLS Annual Congress Sidney, British Columbia date

Ellen Bayens, The Celiac Scene with the support of the Calgary Chapter of the Canadian Celiac Association Used with permission . 1 Disclosure  Canadian Celiac Association • National voice for people adversely affected by gluten. • Volunteer speaker

 The Celiac Scene • Resource for gluten-free living in Victoria, Vancouver Island & the Gulf Islands • Founder

Do not reproduce without permission. 2 Learning Objectives

Upon completion participants will be able to:  Describe the basic physiology of celiac disease  Identify the health consequences of CD  Distinguish between celiac disease (CD), non- Celiac gluten sensitivity (NCGS) and gluten allergy (GA)  Know where and how to find help for CD and NCGS

3 History of Celiac Disease  First described in the second century • Cause not identified.  Samuel Gee, MD - 1888 • First to link diet to Celiac disease treatment. • “If the patient can be cured at all, it must be by means of diet”.  Dutch pediatrician, Willem Karel Dicke, MD - 1952 • Linked ingestion of wheat as cause of celiac disease.

Samuel Gee, MD Willem Karel Dicke, MD 4 Gluten  in wheat, , kamut, , & few other grains.  Elasticity, shape, binder.  Made of two groups of proteins. • , 12 subgroups • Glutenins, strength  = collectively called gluten

5 Celiac Disease (CD)  Auto-immune disease; not a !  Permanent intolerance to certain proteins collectively called “gluten” found in wheat, rye, barley, kamut, .  ~1% of the population-more frequent in families: • 8-15% of 1st degree relatives. (Parents, Children, Siblings) • 5-8% of 2nd degree relatives. (Grandparents, Grandchildren, Aunts, Uncles)  Occurs at any age.  Delayed diagnosis ➔ complications.  Varied symptoms and severity  Can be triggered in healthy, genetically predisposed people when additional stresses are placed on the body • childbirth, severe infections, surgery, food poisoning and emotional stress

6 The Process of Developing CD  3 factors - only AI disease where all factors known: • A genetic predisposition HLA DQ2, HLA DQ8 • Environmental (gluten) triggers abnormal immune response • Inflammatory response (tTG).

 Genes ➔ Gluten trigger ➔ attack intestinal villi ➔ damage/ inflammation ➔ Nutrients not absorbed ➔ malnutrition/health problems ➔ Intestinal permeability increases (leaky gut) ➔Systemic response.

7 Intestinal Villi

Normal Villi Flat Villi 22 Biopsy of Small Intestine - Normal Villi 22 Biopsy of Small Intestine from undiagnosed Celiac patient - Flat Villi

8 Celiac Disease and Auto-immunity

 Gluten binds to antigen presenting cell (APC)  APC presents antigens  Antigen=toxin or other foreign substance that induces an immune response in the body, especially the production of antibodies (AB).  B cells produce antibodies (AB)  AB destroy small intestine

9 Gluten on Small Intestine Villi-

Do not reproduce without permission. 10 Symptoms & Deficiencies Classical Symptoms  Abdominal cramping and pain  and/or  Intestinal gas and bloating  , including steatorrhea  Weight loss

Deficiencies  Iron deficient anemia  Vitamin B12, folic acid, zinc  Vitamin A, D, E,K (fat soluble)  Protein, fatty acids

11 Symptoms Cont. Intestinal Non intestinal  Weight gain Easy bruising  Constipation Edema-hands/ ankles  Lactose intolerance Osteoporosis, bone/joint pain,  Oral ulcers (cankers)  Abnormal liver enzymes Fertility problems, amenorrhea, impotence  disorders – central and peripheral Extreme weakness and fatigue , alopecia and others... 12 Herpetiformis (DH)

 “Celiac disease of the skin”.  Itchy, tingling, red, blistery bumps with clear liquid.  Elbows, knees, buttocks, low back, back of neck.  Continuous, comes and goes.  Occurs in teens to 30s.  May have intestinal damage, with or without other symptoms.  Diagnosis: skin AB biopsy=celiac, even if no intestinal celiac symptoms.

13 Additional Symptoms in Children

 Dental enamel defects • may be the only symptom  Delayed puberty  Failure to thrive, delayed growth, short stature  Abdominal distension  Learning difficulties  Irritability, behavioural changes  Asymptomatic

14 Oral & Dental Manifestations  Delayed eruption/ dental enamel defects  Xerostomia - dry mouth  Recurrent aphthous ulcers (canker sores)  Cheilosis-cracking of the corners of the mouth.  Oral Lichen Planus-chronic inflammatory mucous membranes  Atrophic glossitis • Erythematous, edematous, smooth, painful tongue • B-vitamin, thiamin, pernicious anemia.

Photo source: Children’s Digestive Health Photo source: AAFP.org. Harold T. Pruessner, M.D., Picture source: www.aaom.com/oral-lichen-planus, Picture source: www.nejm.org, Luca Pastore and Nutrition Foundation University of Texas Medical School at Houston The American Academy of Oral Medicine DDS, Rosario Serpico MD., New England Journal of Medicine, 2007 15 Celiac Associated Diseases/ Conditions  Auto-immune disease  Other • Hashimotos thyroiditis • Elevated Liver enzymes, • • Intestinal lymphoma • Mellitis • IgA deficiency • Systemic erythematosus • Down syndrome, Turner’s • Addison’s disease syndrome, Williams syndrome • Sjogren's • Epilepsy • Fibromyalgia • Sarcoidosis •

16 Type 1 Diabetes & Celiac Disease

 Both are autoimmune diseases  90% time, diagnosis of T1D comes before a CD diagnosis 9, 13, 16, 17.  Susceptibility to develop T1D and CD is largely inherited • share similar genetic origins 9, 11, 13, 18.

17 Type 1 Diabetes & Celiac Disease

Symptoms Undiagnosed Type 1 Celiac Disease Diabetes Frequent Urination √ Unusual Thirst √ Extreme Hunger √ √ Weight Loss √ √ Extreme Fatigue √ √ Irritability √ √ Growth Failure (children) √ √

Table taken from csaceliacs/org 10

18 Diagnosis and Treatment

Step 1  Refer to MD Step 2  Do not start gluten free diet before testing  10 grams of gluten/day for up to 8 weeks= 2 servings of gluten= four slices of / day.  Preliminary screening: serologic blood tests • IgA-tTg, IgA-EMA and DGP • Serum IgA- testing (IgA-tTG) 86-89 % • Serum IgA-endomesial testing (IgA-EMA) >90% • DGP is comparable to the tTG and reliable in young children and in the presence of IgA deficiency- not currently available in Alberta. • Genetic markers-HLA DQ2, HLA DQ8 Step 3  Confirmatory diagnosis: upper or intestinal endoscopy with biopsy= gold standard Step 4  Only treatment = Strict gluten-free diet for life  If elevated AB after follow-up: diet not gluten free, cross reactivity

19 5 Criteria for CD diagnosis (ESPGHAN)

1. Symptoms compatible with Celiac disease 2. Positive serology 3. Presence of genetic markers – HLA-DQ2, DQ8 4. Intestinal damage following start of GF Diet

4 /5 of these crdetected by endoscopy/ biopsy 5. Symptom reduction iteria used to diagnose by some children's hospitals in Canada. (European Society for Pediatric Gasteroenterology, Hepatology and Nutrition)

20 What Happens to Celiac Patients When Glutened?  Intestinal symptoms - immediate or delayed  Non-intestinal symptoms - immediate or delayed  No symptoms but intestinal damage ➔ other illnesses.  Amount of gluten that causes symptoms varies • One crumb can make patients sick.  FDA/Health Canada • 20ppm gluten = maximum content allowed in GF labeled food. 11, 21

21 20 ppm of Gluten:

=1/2 teaspoon in a bath =Less than 1 drop in 2.0 tub filled with water (125 litres of soda litre bathtub) 23 Non-Celiac Gluten Sensitivity (NCGS)

 Many people can be gluten sensitive without biopsy proving CD.  ~10% of general population. Fasano 6%, Ford 30%  Symptoms are similar to CD symptoms.  Currently, no reliable tests to diagnose NCGS.

23 Gluten Sensitivity=Intolerance= Food IgG Anti-bodies  IgG anti-bodies attach to food; create antibody-antigen complex  Removed by macrophages; can’t remove complex fast enough  Complexes accumulate; deposit in tissues  Inflammatory chemicals released  NON-allergic (IgE)/ NON-autoimmune  Complicated; IgG, enzyme deficiency i.e. lactose, other tests -ve  Repeated exposure before symptoms  Variety of symptoms • Abdominal cramping & pain • Nausea, gas, bloating, diarrhea, weight loss • Fatigue, , peripheral paresthesia  Anemia & deficiencies: iron, folate, B12, A,E,K,D  Treatment: stop offending food➔ relief  FODMAPS – fermentable oligosaccharides,  disaccharides, monosaccharides, polyols

24 Gluten Allergy = IgE Anti-bodies (AB)

-IgE antibodies  1-2% of population  AB created-remembers food  AB binds to food-histamine released  Can affect organs  Tiny amounts  , swelling (face, lips, tongue, throat), tingling mouth, sneezing, difficult breathing, n/v/d, cramps, low blood pressure  Seconds to one hour  Wheat, milk, eggs, peanuts, tree nuts, soybeans, shellfish, fish  Treatment: avoid, “Epi pen”, Benadryl

25 Lactose Versus Casein and Whey

 Lactose intolerance (sugar)  Casein and Whey • Can be associated with CD intolerance or allergy • Damaged villi lose ability to (protein) produce lactase ➔lactose • Not associated with CD intolerant • Not impacted by introducing • Can improve when the gut GF diet. heals after introducing GF diet

26 Recap!  Celiac=Auto-immune • Remove gluten for life.  Sensitivity=IgG antibodies • Remove gluten, temporary?  Allergy=IgE antibodies, histamine release • Remove gluten, treat with medication upon exposure

27 The Canadian Celiac Association is the national voice for people who are adversely affected by gluten, and is dedicated to improving diagnosis and quality of life. www.celiac.ca

28 Canadian Celiac Association

Mission  National voice for people adversely affected by gluten  Improve diagnosis and quality of life.

Advocates  Food labelling/disclosure of gluten foods sources.  Government recognition of extra costs and time involved in eating gluten-free.  Safety, availability and enrichment of gluten-free products.  Public awareness to make living gluten-free easier and safer.  Medical awareness for early diagnosis and interventions.

29 References & Resources

1. Type 1 Diabetes & Celiac Disease: Clinical Overlap and New Insights into Disease Pathogenesis.. Aaron Cohn; et al. Current Diabetes Reports, 2014 Aug 14(8): 517. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156157/ 2. Celiac Disease. Peter H.R. Green, MD; et al. The Journal of Allergy and Clinical , 2015, Vol 135:5, 1099-106. Found at : http://www.jacionline.org/article/S0091-6749(15)00230-4/abstract 3. Systematic Review with Meta-analysis: Associations between and Type 1 Diabetes. P. Elfstrom; et al. Ailmentary Pharmacology and Therapeutics, 2014, 40, 1123-32. Found at: http://onlinelibrary.wiley.com/doi/10.1111/apt.12973/full 4. Celiac Disease. Canadian Diabetes Association Website. Information found at: http://diabetes.ca/diabetes-and-you/complications/celiac-disease 5. Celiac Disease Alone and Associated with Type 1 Diabetes Mellitus. Alexandra Tsouka; et al. Journal of Pediatric Gastroenterology and Nutrition, 2015, 61(3), 297-302. Found at: http://journals.lww.com/jpgn/Fulltext/2015/09000/Celiac_Disease_Alone_and_Associated_With_Type_1.9.aspx 6. Prevalence of Celiac Disease in Children With Type 1 Diabetes Mellitus Increased in the Mid-1990s: An 18 year Longitudinal Study Based on Anti-endomysial Antibodies. Silvana Salardi; et al. Journal of Pediatric Gastroenterology and Nutrition, 2008, 46 (5), 612-4. Found at: http://journals.lww.com/jpgn/Fulltext/2008/05000/Comparative_Evaluation_of_Serologic_Tests_for.24.aspx 7. Coeliac Disease in Children with Type 1 Diabetes: Are Current Guidelines Proving Difficult to Implement in Practice. Rachel Atherton; et al. Journal of Pediatric Gastroenterology and Nutrition, 2014, 59(5), 600-3. Found at: http://journals.lww.com/jpgn/Fulltext/2014/11000/Coeliac_Disease_in_Children_With_Type_1_Diabetes__.12.aspx 8. Celiac Disease Screening. Celiac Disease Foundation. Information found at: https://celiac.org/celiac- disease/understanding-celiac-disease-2/diagnosing-celiac- disease/screening/ 9. Let’s talk about celiac disease and diabetes. Celiac Support Association; Promoting a Gluten-Free You, Lifeline, 2010, Vol XXX, No 3, from http://www.csaceliacs.org/diabetes_and_celiac_disease_fact_sheet.jsp 10. Screening for Celiac Disease in Type 1 Diabetes: A Systematic Review. Pham-Short, A. et al. Pediatrics, 2015, 136(1), e170-6. Found at: http://pediatrics.aappublications.org/content/136/1/e170.full 11. The Role of Gluten in Celiac Disease and Type 1 Diabetes. Serena, G., Camhi, S., Sturgeon, C., Yan, S., & Fasano,. Nutrients, 2015, 7, 7143-62. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4586524/ 12. Screening for Celiac Disease and T1 Diabetes. Freemark, M & Levitsky, L. Diabetes Care. 2003, 26(6), 1932-9. Found at: http://care.diabetesjournals.org/content/diacare/26/6/1932.full.pdf 13. Celiac Disease in Type 1 Diabetes Mellitus. Camarca, M. E., Mozzilo, E., Nugnes, et al. Italian Journal of Pediatrics, 2012, 38:10. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348012/ 14. Type 1 Diabetes Mellitus and Gluten Induced Disorders. Hogg-Kollars, et al. Gastroenterology and Hepatology from Bed to Bench, 2014, 7(4), 189-97. Found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4185872/ 15. Type 1 Diabetes and Celiac Disease: Overview and Medical Nutrition Therapy. Schwarzenberg; et al. Diabetes Spectrum, 2002, 15(3), 197-201. Found at: http://spectrum.diabetesjournals.org/content/15/3/197.article-info 16. Clinical and Immunological Features of Celiac Disease in Patients with Type 1 Diabetes Mellitus. Umberto Volta; et al. Expert Review of Gastroenterology and Hepatology. 2011:5(4):479-487. Found at: https://www.ncbi.nlm.nih.gov/pubmed/21780895 References & Resources Cont. 17. Celiac disease and autoimmune-associated conditions. Lauret, E & Rodrigo, L. BioMed Research International, Volume 2013, Article ID 127589, 17 pages.

18. Screening for celiac disease in the general population and in high-risk groups. Ludvigsson, J.F., Card, T.R., Kaukinen, K., Bai, J., Zingone, F., Sanders, D., & Murray, J.A. United European Gastroenterology Journal, 2015, Vol 3(2), 106-20.

19. Type 1 and type 2 diabetes in celiac disease: Prevalence and effect on clinical and histological presentation, BioMed Central Gastroenterology, 2016, 16:76

20. High Prevalence of Microvascular Complications in Adults with Type 1 Diabetes and Newly Diagnosed Celiac Disease. Leeds, J., Hopper, A., Hadjivassiliou, M., Tesfaye, S., & Sanders, D. Diabetes Care, 2011, 34(10), 2158-63.

21. Health Canada’s Position on Gluten-Free Claims, Health Canada, 2012. Found at: http://www.hc-sc.gc.ca/fn-an/alt_formats/pdf/securit/allerg/cel-coe/gluten-position-eng.pdf

22. Biopsy of a Small Intestine Showing Normal Villi & Villous Atrophy Images, Govind Bhagat, Columbia University Medical Center, 2013. Found at: http://newsroom.cumc.columbia.edu/blog/2013/08/05/celiac-disease-patients-with-ongoing-intestine-damage-at-lymphoma-risk/

23. Celiac Disease and Gluten Sensitivity – The Diseases, Diet and Legislation Community Workshop by Joanne Murray, 2015. Found at: http://www.calgaryceliac.ca/wp- content/uploads/2015/03/Community-Workshop-28-Mar-2015.pdf

24. Canadian Diabetes Association: Sugars Position Statement. Found at: https://www.diabetes.ca/getmedia/9d0baffb-6268-4762-acc7-e52575c40c55/cda-position-on-sugars.pdf.aspx

25. Fiber, Government of Canada. Found at: https://www.canada.ca/en/health-canada/services/nutrients/fibre.html

➢ The Canadian Celiac Association, http://www.celiac.ca

➢ Marie-Claude Beaulieu C.H.N., Education Chair, Calgary Chapter-Canadian Celiac Association

➢ Dr. Trey L. Petty DDS, FADI FAGD

➢ Medical-dictionary.thefreedictionary.com

➢ The Mayo Clinic-www.mayoclinic.org/diseases

➢ Ronda Nelson PhD, Restoration Health Inc. 2697 Victor Ave. #B Redding, CA 96002

➢ Fitzpatrick’s Color Atlas and Synopsis of Clinical Dermatology

➢ Dr. Perlmutter MD, Grain Brain

➢ Dr. Natasha Campbell-McBride, GAPS diet

➢ Dr. William Davis MD, Wheat Belly

➢ Google Images.com 31 ➢ Unearthedcomics.com, Osara Zimmerman For More Information on Celiac Disease and Non-Celiac Gluten Sensitivity (NCGS) visit www.celiac.ca

Thank you The Celiac Scene

The premier resource for fabulous gluten-free living in Victoria, Vancouver Island and the Gulf Islands. Owned and operated by celiacs, we guide you to the restaurants we trust and the local gluten-free products we love. We even tell you where to purchase them, at the very best prices! Enjoy national celiac news, local reviews and non-stop gluten-free events notices. The Celiac Scene in your gateway to ‘Gluten-Free Paradise!’ www.theceliacscene.com

33 Used with permission. 34