Celiac News

I have the delightful task of guiding you through the evolution of the diet management of Celiac Disease (CD) and Dermatitis Herpetiformis (DH) over the past 25 years, namely the evolution of the gluten-free diet. In researching, I realized how much progress has been made over the past 2 decades. I feel the Canadian Celiac Association has much to be proud of but I feel there are even greater accomplishments ahead.

I will take you through gluten-free diet (GFD) treatment through the 70's, 80's and 90's. Then look at the GFD as it is today and finally close with some tips on how to maintain and maximize your GFD.

Hippocrates says it aptly in this quote that "Thy food shall be thy medicine". The GFD is the sole treatment for CD and certainly an integral part of the treatment for DH. GFD treatment is for life. As you all know this diet is simple in principle but very difficult in practice. The hidden sources of gluten make this diet very frustrating and often discouraging.

In Canada, the GFD is defined as one eliminating wheat, rye, barley, oats, triticale and any parts thereof. The toxic component of the gluten molecule lies in the prolamin portion. In wheat this portion is called gliadin. It comprises approximately 40 - 50% of the protein. In rye this portion is called secalin. It comprises approximately 30 - 40% of the protein. In barley this portion is called hordein. It comprises approximately 35 - 45% of the protein. In oats this portion is called avenin. It comprises approximately 10 - 15% of the protein. There are prolamins in rice, corn and other foods but these do not contain the toxic tetrapeptide(s) which are reportedly responsible for the villous damage and rash. As you can see GFD is a bit of a misnomer.

The term gluten as we refer to here is a "shorthand term for peptides derived from prolamins that include the harmful amino acid sequences found in wheat (gliadin)." Since the term gliadin-free is not entirely correct since it excludes the prolamins in rye, barley and oats and the term prolamin-free is not correct either since there are prolamins in rice and corn, thus we continue to use GFD, right or wrong, as the name for the diet treatment in CD and DH.

The GFD in the 70's was really gluten-restricted or low gluten. It included meat, fish and poultry: vegetables and fruit and of course milk and milk products, but the bread and baked products were based on wheat starch flour.

Highlights of the 70's were...

1973 - The first celiac self help group met under Kay Ernst's directive - what was to become the first chapter of the CCA.

1974 - Weston's bakery and the research dietitian at Toronto Sick Kids developed a wheat starch based bread for retail sale.

Mid 70's - GFD (gluten reduced) treatment was finally accepted in the medical management of DH although this had been suggested a decade earlier.

The GFD in the 80's began moving toward a strict gluten-free diet. It included meat, fish and poultry; vegetables and fruit; milk and milk products; some wheat starch based products and some rice and corn based breads and baked products. The grains allowed by the end of this decade were buckwheat, millet, sorghum, quinoa, amaranth and cassava although there was much controversy over them earlier in the decade (especially buckwheat and millet).

There was much progress made during the 80's. Some of the highlights are...

1980 - The national celiac organization was formed.

- Codex Alimentarius Commission of the Food and Agricultural Organization of the United Nations (FAO) and World Health Organization (WHO) among its many functions regulates the international standard for labelling. At this time they allowed up to 5% Nitrogen or 3% protein in products labelled gluten-free.

1981 - Practitioners were questioning diet treatment practices and this was the start of a movement in Canada toward a strict GFD.

- Bell et al published the first article in Canada addressing appropriate specific grains for GFD, allowing wheat starch, oats, buckwheat, msg, corn rice and sorghum, wine and liquor but NOT allowing wheat, rye, barley, triticale, millet, malt, HVP and beer and ale. 1982

- Kingsmill and Ener-G Foods had developed and were marketing rice-based breads. - GF fibre problems were answered when corn bran and corn germ became available.

1983 - National sets up a food bank of GF foods for CD/DH patients to help with dietary compliance.

1984 - The first national celiac handbook was published.

- Earlier research implicated that only gliadin was toxic. In UK, Ciclitira et al showed that all 4 subfractions

1985 - Breakthrough regarding wheat starch occurred this year when Ciclitira et al established that wheat starch based bread caused clinical symptoms.

- Patel et al identified pharmaceuticals as another hidden source

Mid 80's - Cereal chemists and researchers had identified 2 common tetrapeptide(s) within the gliadin molecule which were felt to be toxic: pro-ser-gln-gln and gln-gln-gln-pro.

1986 - Cookbooks available were limited, especially those that were not based on wheat starch.

- The clever and talented Val LeClair of the Sudbury Chapter summed CD/DH patients frustrations in this illustration "Celiac Burnout". Humorous, but true.

It epitomized the frustration of patients at this time with the poor quality of GF products, the poor labelling of GF products and a lack of awareness about CD/DH among medical practitioners.

1987 -  The late Dr. Alex Campbell (past chair of the Nutrition Committee for the CCA) published an important and in depth reference article on Diet Therapy of CD/DH

- the first of its kind. He looked at the toxic factors (i.e. cereal protein), patient response to gluten, acceptability of foods and use of the GFD.

1988 - Codex Alimentarius Commission updated their GF dry matter of GF product. This is a much stricter guideline and virtually eliminates wheat starch from use in products labelled GF.

1989 - The Canadian Celiac Association surveyed its 1,927 members. Results identified that patients with CD and DH appear to be sensitive to many non-gluten containing foods and verified the extra cost of the GFD.

Recommendations from the survey were standardization of the GFD across Canada and to increase celiac awareness in Canada.

These were challenges to be met in the 1990's. The 90's thus far have seen fewer major breakthroughs with GFD therapy. The current decade has seen more fine-tuning of the GFD and a major emphasis on improving resources and celiac awareness.

Some highlights of the 90's are...

1991- The development of our first national teaching video on Celiac Disease: A Diet For Life.

1992 - Since 1992 there has been the Pocket Dictionary listing the acceptability of foods and food ingredients for the GFD. It was prepared by the late Dr. Campbell and our own PAB member, Marion Zarkadas. This certainly has taken the mystique out of label reading.

1993 - In the early 90's Canada came out with a New Food Guide and another PAB member, Shelley Case, adapted a GF Food Guide from the new Canada's Food Guide.

1994 - In an attempt to standardize GFD treatment across Canada and help dietitians in remote areas of the country to provide current, quality diet instruction when counselling few CD/DH patients a year, the Resource Kit for dietitians was developed.

1995 - In Italy, researchers published an article outlining their attempts to create a variety of wheat deficient in gliadin. Thus far they have been unsuccessful but this gives us some hope for the future.

- In Finland a study was published recommending a moderate amount of oats was tolerated by CD and DH patients. Problems with this study were the short time frame (6 - 12 months); pure oats was used in the study which is unavailable for retail sale; the GFD included wheat starch flour, which could account for the lack of difference between control and oat groups.

1996 - Dietitians and patients alike welcomed the revised guide for the celiac diabetic. This new version is far more informative and user friendly. Thanks to Shelley Case for her hard work co-ordinating and preparing the new guide.

- The Teaching Video gets current in this revision; included is DH and blood screening. To date DH has always taken a backseat to CD. Incidence of DH compared to CD is much lower, therefore the total number of patients needing treatment is lower. However, it is well recognized that treatment for both includes GFD therapy. In DH the GFD is effective to...

• Lower the dose of the toxic drug(s) used to treat DH
• Possibly eliminate the need for the toxic drug(s) used to treat DH
• Resolve the associated enteropathy in the GI tract.

The only drawback with GFD treatment in the resolution of the DH rash is that it may take months or years. This is possibly one of the reasons why practitioners in the 60's and 70's felt that GFD treatment was not effective for DH.

In Canada, the GFD presently includes meat, fish and poultry, vegetables and fruit, milk and milk products as did previous GF diets. The major change is that it is now well recognized that wheat starch or wheat starch based products should not be included in the GFD. In Canada the aim is zero gluten. Replacement of these products is primarily with rice and corn based products or those made with other allowed grains.

In Canada, the grains allowed today are buckwheat, millet, sorghum, amaranth, quinoa, teff, cassava and flax plus legume, sago and soya flours.

It is the hidden sources of gluten which make this diet so difficult to follow strictly, not to mention the ever changing list of hidden sources of gluten and the non agreement among groups regarding this list.

In Canada, at present, distilled alcohol, vinegar including malt vinegar (Editor's Note: The present position of the Professional Advisory Board of the Canadian Celiac Association is that people with celiac disease MUST AVOID malt vinegar. Oct. 2002) and yeast including brewer's yeast are ALLOWED while spice and seasoning mixtures, oats and pharmaceuticals contain grain filler are NOT ALLOWED. May I refer you to the GFD copy in the National Handbook for the specifics of what is and is not allowed.

The saying "We have come a long way baby" certainly is appropriate here. Not only is the GF diet now nutritionally balanced, but the quality of the GF breads and baked products has improved from the canned bread patients ate back in the 70's. there are a variety of  GF baked products such as donuts, cookies, fruit cake, muffins, and various breads too numerous to mention. I recall the 2 choices of boxed GF cookies my patients had to choose from back in the early 80's. Both were imported from Europe and neither was too palatable without liquid refreshment to wash away the starchy coating left in the mouth. There are now GF recipes for bread made in the bread machine for those on a tight time schedule or those who just love the smell of fresh baked bread.

Patients instructed to follow a GFD today should appreciate the many resources available to them.

There are excellent cookbooks available now which are truly gluten-free such as the 3 books Bette Hagman has authored. Her latest book features non-rice based recipes and recipes which are fast and simple for those of us short on time.

The list of resources available through the National Celiac Association is impressive and each directed to help their members achieve health through GFD treatment. In addition to those already mentioned, there is a travel guide to help you with the availability of GF products and meals while travelling across Canada, a booklet for small children to help them understand their medical condition of CD, as well as pamphlets on CD/DH and newsletters, locally and nationally.

Compared to the single food bank back in the the 70's there are now too many distributors of GF products to mention here. This large number of distributors not only indicates the expanding market for these products but speaks to the expanding number of GF products.

In closing, I would like to share a few strategies for patients to maintain and maximize their GFD. Poor dietary compliance is well documented but what can we do about it???

I have 5 strategies which may help you:

• Be knowledgeable. Know what the GFD is about and keep up to date. that means reading newsletters, journal articles, seeing you gastoenterologist/doctor and dietitian periodically, knowing what resources are available to you, and where GF food products are available. Ask questions. Remember nothing asked or learned is nothing gained.
  
  
• Educate others about CD, DH and the GFD. Explain to relatives why a little piece of cake isn't OK for the celiac child despite whatever the child says. I'm sure all of you can recall an uncomfortable incident where it was easier to cheat than to have to explain. Be pro-active and try to reduce or eliminate these situations by educating people. People generally don't want to make their guests ill.
  
  
• Have the willpower to say no!!! Easier said than done but the more often you do it the easier it gets. Also reward yourself or your child for doing this. People who lose weight do it and buy themselves new clothes. I think it is a real accomplishment to avoid gluten for 1 week, 1 month and then 1 year. Reward yourself with something that is meaningful or important to you. Be good to yourself.
  
  
• Motivation and support are important to every patient following this diet. With the right motivator you can do anything. Motivation in part must come from within. But I believe each of you has the greatest motivator and that is staying healthy for yourself and avoiding complications. But sometimes that just isn't enough, if you will recall Celiac Burnout. Remember if your motivation is failing, there is support through the CCA and its chapters, through meetings, newsletters or by just picking up the phone and calling either the national office or your local chapter. Know your resources and use them to your advantage.
  
  
• Be positive. Maintain a positive attitude. Instead of thinking of all the things that you cannot eat, think of all the things that you can eat. Be that personality who takes on a positive outlook. Don't dwell on the negative. Life is too short to do this.

Remember these 5 points and they will help you to maximize your GFD.

In summary, I think you would agree with me that in Canada there has been much progress in the diet treatment for CD and DH over the past 25 years, both from the perspective of diet information, availability, quantity and quality of GF products and the impressive resources now available for those of you with CD/DH. As good as the GFD is today, there are still many areas for improvement, especially in the clarification and/or elimination of the hidden sources of gluten, staying power and quality of the GF bread and bread products, contamination of GF flours, international agreement and standardization of GFD etc. My list goes on and on. The national CCA has much to be proud of and its many accomplishments but there is still much work to do to improve diet and medical treatment of both CD and DH. Finally I have shared some strategies for maintaining and maximizing your GFD. I hope one or more of them can help you, because "YOU" and only you have the power to help yourself.