GIG Educational Conference 2009 – Learn to Celebrate Life
Seattle, June 5 & 6
I was again fortunate to be able to attend the GIG conference held in Seattle the first weekend in June. Although my plane was 4 hours delayed, it was still daylight when I arrived and I was able to see the snow covered mountains as we came in for a landing. In getting off the plane, it felt more like Arkansas. The temperature was about 90F.
The meeting theme this year was “Celebrating Life” and celebrate we did. Of course celebration always includes food. There were over 50 vendors; most were displaying delicious samples of the GF foods they sell. There were not just packaged foods. These vendors cooked up some wonderful goodies for us to try. There were cookies, muffins, burritos, cakes, soups, baklava and so much more. I hardly had room for my meal when lunch came. Everything at the meeting is gluten free. No asking what is in the food unless you have other food intolerances. No one thinks it strange if you do ask about ingredients.
Celebration always includes people – over 300 people attended. I was able to see old friends and meet new friends. I have always said that gluten free people are some of the nicest people I know.
The next meeting will be held in Minneapolis Minnesota. I hope that you will be able to attend next year and “celebrate life” with us.
I am sharing notes I jotted down and hope they accurately represent what the speakers said. This is not medical advice. Please see your medical team for diagnosis and treatment concerns.
Anne Luther
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Peter Green, MD
http://www.celiacdiseasecenter.columbia.edu/A_Patients/A01-HOME.htm
He was a speaker at the professional meeting and at the banquet. He is the author of “Celiac Disease: A Hidden Epidemic” http://www.amazon.com/Celiac-Disease-Peter-M-D-Green/dp/006076693X
“Understanding CD, DH, and Other Forms of Gluten Sensitivity”
“Celiac Disease – formerly a gastrointestinal disease but now it is defined as a multisystem disorder.”
“We have all come a long way and there is a long way to go”
In Italy, having CD = free food and 3 extra days off from work to see the doctor.
He showed a slide demonstrating that those with CD have a larger forehead. He said there will be a paper coming out about CD and dental defects.
Diagnosis is still based on small bowel biopsy and improvement with a gluten free diet. This gold standard for diagnosis is “tarnished”, but he feels, at this time, biopsy is important. Don’t take the biopsy report at face value – your doctor should ask the pathologist about subtle signs of CD.
Prometheus will be offering a spit genetic test.
The incidence of CD is about 1% world wide but in North Africa there is an incidence of CD in children of 1/18.
As the incidence of CD is the same 1% for children and adults, it is thought that adults have had CD all of their life.
Only 5% of those with CD in the US have been diagnosed. Dr. Green believes this is related to the lack of pharmaceutical money for research.
The rate of CD is increasing. In the 1950’s the incidence was only .2%. This was found by testing stored serum samples of young soldiers. Finland has found that 2.4% of elderly adults have CD. The Swiss say that 3% of children age 12 have CD.
HLA DQ2 and DQ8 account for 50% of the genetic influence. We do not know the other pieces of the puzzle.
We evolved to eat meat – not wheat. We have been eating wheat for only 10,000 years. Our proteases don’t digest gluten.
Currently, neurologists are the major single source of referral to Dr. Green.
CD is not a calorie malabsorption syndrome. Only 15% with CD are underweight but more may be nutrient deficient. Less than 50% present with diarrhea.
He warned about the danger of starting bisphosphonates (Fosamax, Boniva, Actonel, Zometa) if one is malabsorbing, there is concern of serum calcium dropping to dangerous levels. He says that people should be tested for CD before starting on these drugs.
Those with CD have antibodies to tissue transglutaminase 2 and there are bowel changes.
Those with gluten related brain disorders have antibodies to tissue transglutaminase 6 and may not have bowel involvement.
Those with dermatitis herpetiformis have antibodies to tissue transglutaminase 3 and 20% will have a normal intestinal biopsy.
Tests for transglutaminase 3 and 6 are not available except for research.
Deamindated Gliadin Peptides is replacing the antigliadin antibody tests.
EMA is very specific for CD, but it is not easy to do.
TTG IgA and total IgA – Dr. Green feels these are the best tests for screening. The biopsy remains the gold standard, but it is far from perfect. One pitfall of the biopsy is the failure to biopsy the proper area(the bulb). Not all pathologists are experts of CD. He finds that he can change the diagnosis in about 20% of the slides he has an expert look at.
Gluten Sensitivity – one has a symptomatic response to withdrawal of gluten although tests were negative. This is well demonstrated for DH, IBS and neurological syndromes. Research shows there is damage to the intestinal microvilli that can be seen with electron microscopy, but this is very expensive and not readily available.
He warned of tissue transglutaminase in food. It is being added to yogurt and used in meats and fish as a binder. If people with CD eat this they will react.
Dr. Green encourages all of us to be active, speak out, participate in research, and raise money for research. We need to have celebrities to help spread information. He was greatly disappointed in how some the celiac community reacted to Elizabeth Hasselbeck’s book, “The G-Free Diet”
He left us with questions:
Kathy Breedon, PhD, RD, CSP, FADA http://www.meritcare.com/healtheducation/speakers/cathy_breedon/pdflist.aspx
“Improving Your Diet with Super Foods”
If you ever have a chance to hear Aunt Cathy (Cathy Breedon) please do so. You will not be disappointed. She is a Clinical Nutrition Specialist in Fargo ND and has wonderful information to share about nutrition. I have heard her speak 3 times and I always learn something new. This time she talked about Omega 3 fats, antioxidants, Vitamin D, iron copper and zinc and carnitine.
I have a handout, but she said that she will be making available an update. I am waiting for this.
Omega 3’s help control inflammation. We tend to eat far too much of omega 6’s(vegetable oils) which promote inflammation.
She feels that everyone should take a good multivitamin and additional vitamin D even if you “eat right” because of the absorption difficulties we have.
Vitamin D is now recognized as a serious under diagnosed and widespread problem with great many serious health consequences. These include congestive heart failure, heart attack, multiple sclerosis, diabetes, osteoporosis, muscle/nerve pain, muscle weakness, rheumatoid arthritis, certain cancers, autoimmune diseases and osteoporosis. The current RDA is inadequate to maintain a good blood level of vitamin D. There is still debate on how much vitamin D one should take and what is the upper limit of safety. It is now known that the upper level of safety for D is over 10,000 IU per day.
The only way to know if your vitamin D level is optimal is to have a 25(OH)D level done. This can be done by your doctor or you can do this with a fingerstick at home through www.grassrootshealth.org (handout of chart)
Milk intolerance – is it sugar or protein? Lactose is a milk sugar. The enzyme, lactase, digests this sugar and is made in the tips of the villi. If the villi have been destroyed by celiac disease, then one can experience gas and bloating with milk. As the villi heal, this may restore the ability to make lactase again. But it appears that for many people with CD and gluten intolerance there is an actual intolerance of cow’s milk protein. Casein is one of these proteins. In one study a mucosal inflammatory response similar to that elicited by gluten was produced by cow milk protein in about 50% of the patients with CD. Clin Exp Immunol 2007 Mar:147(3):449-55.
Iron, copper and zinc: We have all heard about the connection of iron deficiency anemia to celiac disease, but what about copper and zinc. Copper deficiency can result in the inability to transport iron and can look like iron deficiency anemia. Copper deficiency can cause permanent neurological damage. When one is iron deficient, it is safe to assume that there is an unrecognized zinc inadequacy too. Zinc is a factor is over 200 enzyme systems in the body. If one supplements with zinc, it is important to supplement with copper because zinc alone can interfere with copper absorption.
Carnitine is produced in the liver and kidneys and also found in meat. A recent investigation looked at carnitine supplementation in CD patients with fatigue and found they benefited from carnitine supplementation.
Martin Kagnoff, MD
“This is Only a Test”
Dr. Kagnoff is Professor of Medicine and Pediatrics, UC San Diego and Director, Wm. K. Warren Medical Research Center for Celiac Disease http://celiaccenter.ucsd.edu/index.shtml
Dr. Kagnoff went over the current recommended testing for celiac disease. The most common test is the IgA tissue transglutaminase (TTG). This test is an automated test. The EMA test has to be graded by an observer and, therefore, operator error comes into play. About 2-3% of those with CD are IgA deficient and then a tTG IgG test is indicated. If one is not IgA deficient, then the IgG tests are unreliable.
The anti-deamediated gliadin peptide antibody (dGP) measures segments of gluten and is less sensitive and less specific than the IgA tTG test.
Dr. Kagnoff does not feel that screening of the general population is warranted. He feels that high risk groups should be screened. Here is the list from his website:
The following symptoms warrant consideration of testing for celiac disease:
1. Short stature
2. Delayed puberty
3. Dermatitis herpetiformis
4. Dental enamel hypoplasia
5. Premature onset of osteoporosis
6. Unexplained elevated liver transaminases
7. Unexplained iron-deficiency anemia
8. Unexplained infertility or miscarriages
9. Peripheral neuropathy, ataxia or other unexplained neurological symptoms
The following conditions are associated with celiac disease and screening for celiac disease should be considered:
1. Type 1 diabetes mellitus
2. Selective IgA deficiency
3. Down syndrome
4. Turner syndrome
5. Williams syndrome
6. Autoimmune thyroiditis
7. Sjogren’s disease
8. Primary biliary cirrhosis
9. Microscopic colitis
About 30-40% of the population have DQ2 or DQ8. Of those with CD, 95% are DQ2 and 5% are DQ8.
If you do not have DQ2 or DQ8 there is only a 1% chance that you will have CD.
Capsule endoscopy is good for unexplained symptoms, but tissue samples cannot be obtained.
The IgA tTG test should revert to normal after 3-6 months of living gluten free, but a negative antibody test does not mean the intestinal mucosa has healed – 50% never revert to “normal”.
Dr. Kagnoff did not address non-celiac gluten sensitivity.
Jean Duane also known as The Alternative Cook http://www.alternativecook.com/
“GF on a Dime”
Jean gave tips on saving money.
Here is her recipe for Cornbread Muffins
The sweet taste of corn works so well as a muffin or quick bread. Eat these the “southern way”, sliced in half and slathered with honey or molasses. Or go south of the border and give them a Mexican flare by adding some chopped green chilies or jalapenos, a little chili power and a pinch of cumin.
Preheat oven to 400
Wet Ingredients
¼ cup honey or agave nectar
½ cup rice, nut or seed milk
½ cup sparkling water (not club soda as it has salt)
¼ cup sunflower oil
2 egg whites
Dry Ingredients
1 ¼ cups rice flour
¾ cup yellow corn meal
2 tsp baking powder
½ teaspoon salt
1. Mix wet ingredients in a bowl.
2. In a separate bowl, mix dry ingredients. Add the dry ingredients to the wet ingredients and whisk until blended
3. Pour batter into an oiled muffin pan and fill to the top of each muffin cup. Let batter sit a few minutes to allow flours to absorb the moisture and to activate the baking powder.
4. Bake 25 minutes
Recipe excerpted from Bake Deliciously! Gluten and Dairy Free Cookbook – permission to share from Jean Duane
Lisa N. Schatz, Pharm D, BCPS
“Pharmacy – Medicines”
“The immune system is fairly complex.”
Treatments for CD that are being looked into are immunotherapies, enzymes, smart grains and vaccines.
Enzymes break apart the large gluten molecule. She mentioned two that are available over the counter now, but there is concern that they may not break down the proteins into small enough pieces to render them harmless. One from aspergilla looks promising and is in clinical trials. http://clinicaltrials.gov/ct2/results?term=enzyme+gluten
Zonulin receptor antagonist, also known as AT1001 or larazotide acetate is looking promising. It blocks zonulin. Zonulin controls intestinal permeability. Alba Therapeutics makes larazotide and has some informational videos about tight junctions and zonulin. http://www.albatherapeutics.com/tabid/168/Default.aspx
The vaccine being developed is really a desensitization to attenuate the reaction. It may wear off over time.
Smart grains – these are grains without the proteins that are toxic to the CD community.
Recently a mouse model for CD has been found. This may increase research.
Tips on getting GF medications:
Lisa N. Schatz,Pharm.D., BCPS
“On the Go”
How to have GF food when away from home:
For best absorption, don’t take iron and calcium together. Thyroid medication needs to be taken separately and you need to adjust dosage in spring and fall (I did not get to ask her why this was.)
Keith G Lowenstein, MD
Associated Health Issues with Celiac Disease and Gluten Intolerance
Presented in the Professional meeting
“Associated Health Issues with CD and Gluten Intolerance”
Although tests for CD are negative in those with Gluten Intolerance(GI), a gluten free diet will be beneficial. The GF diet can be suggested or prescribed only after CD has been ruled out by blood tests or blood tests and biopsy. CD that has yet to develop measurable features is GI. Villous atrophy IS an end stage disease process – why wait until end stage disease? Dr. Lowenstein feels that the following misinformation must be looked at:
He gave a long list of conditions, symptoms and disorders that are associated with CD and GI.
Reasons to consider going GF without CD
His celiac/gluten intolerance iceberg looks like a brain. Cerebral hypoperfusion, dementia, ataxia, epilepsy, cognitive impairment, occipital calcification have all been associated with gluten intolerance. One slide was shown from a study in the 60’s where a patient became suicidal when challenged with wheat.
Labs to consider if you have celiac disease or gluten sensitivity:
What Now?
Dr. Lowenstein gave another talk entitled What Now? What happens after you have been diagnosed with CD or gluten intolerance. Be aware that you may go through a grieving process that included all the steps – Denial, Anger, Bargaining, Depression and Acceptance. This is not always a linear process. It is more like a spiral and you may go through these phases more than once.
When first diagnosed, get educated. Learn as much as you can about your condition. Find support through friends, family and support groups. Get help from your doctors, dietitians and counselors. Consider that you may have to learn how to cook.
Don’t forget to have fun and joy in your life.
Vitamins and Minerals are essential for life. We need to be sure we are getting and absorbing these essential nutrients.
Epigenetics – how environment changes our gene expression. For more on this go to Ghost in your Genes http://www.pbs.org/wgbh/nova/genes/ Regulation of gene expression depends on nutrition and epigenetics.
Gluten Free diet does not equal healthy diet. To eat a healthy GF diet, eat whole foods, whole grains, don’t let sugar take you over, and take supplements.
Melinda Dennis MS, RD, LDN
http://www.deletethewheat.com/bio.html
“Whole and Super Gluten Free Foods”
Major deficiencies in celiac disease can include B12, zinc, vitamin D and iron.
Most GF cereals are not fortified.
Many people have trouble with too much weight gain because of the increase in carbohydrates.
Gluten free food is 242% more expensive than a gluten diet.
To lower cost and increase nutrients, use “super foods”:
If you get cold sores it may be from an amino acid deficiency.
She talked about using quinoa, amaranth, buckwheat, millet, sorghum and teff.
Diet alone is not sufficient to give all nutrient needs.
Sufficient vitamin D cannot be obtained through diet alone.
The last speaker of the conference was 16 year old Max Renke. He was diagnosed at age 7 after seeing 6 doctors and has been an active advocate for CD ever since. At age 7 he started a club in school called “I Can’t Eat That”. This club was for all children who were on a special diet. By age 10 he was meeting with the New Hampshire State legislators to educate them about Celiac Disease and the Food Labeling BILL and working with The American Celiac Disease Alliance. He continues to meet with legislators, school food services and raise money for research. He has also met with the governor of NH. He is developing a video game and needs sponsors. His Eagle Scout project is about community education and awareness and this presentation will be available on the Celiac Disease Foundation’s website.
Max reminded us that: