online at WWW.SouthernArizonaCeliacSupport.org
DISCLAIMER: This publication is intended as a general information resource for gluten-intolerant individuals. It is NOT intended for use in diagnosis, treatment, or any other medical application. Please consult your physician for professional medical advice and treatment.
In this Issue
- Dr. Ford’s lecture sets an attendance record
- Potluck and SACS’ Election slated for February 27th
- Fourth Friday GF Dining
- Your SACS in action
- Chapter 15 Notes
- Hashimoto’s Thyroiditis
- SACS joins forces with the Food Bank
- SACS volunteers needed
- Mark your calendar
- Mini Cheese Tarts
- Low-tech CD immune therapy
- SACS 2010 Potluck, Feb. 27th (map)
Dr. Ford’s lecture sets an attendance record
Dr. Rodney Ford’s Nov 7th presentation on the insidious effects of gluten on the whole body attracted over 120 people, a SACS‘ record for attendance. With his delightful New Zealand accent and clear presentation of his experience as a clinician, the crowd learned new concepts about CD and gluten intolerance.
Just two years ago he coined the term "gluten syndrome" because he was diagnosing "non-celiac gluten sensitivity", "gluten intolerance", "gluten sensitivity" or "gluten reactivity" which was confusing. Now he diagnoses people (even those with CD) as having "gluten syndrome".
Ford says this new diagnostic criteria is catching on despite some die-hard physicians who adhere to an artificial standard of what is and what is not celiac disease. That standard translates loosely to, If a patient does not meet these age-old criteria, he or she cannot have CD – even if gluten is what is making them sick. If these patients get better on a GF diet, it must be a placebo effect. Dr. Ford says that it is difficult for physicians to accept the concept of diet as medicine.
He explained that if doctors only look for gut damage then that is all they see, nothing else. Their preconceived notions blind them. Further, he said it doesn‘t matter if you believe in gluten sensitivity or not as it is not a theoretical issue--neither are diabetes or heart disease. At this point in the lecture, Dr. Ford turned to the cases he treated in his 30 years as a pediatrician, statistician, and researcher. He compared their similarities and differences which eventually led him to realize that gluten damages many people even if these people don‘t have the actual CD genes of DQ2 and DQ8.
The food you eat affects your brain and every other organ in the body. Good food is good for your brain and your body. Bad food will not help your brain or the rest of your body and it will be deleterious to you. Gluten is one of the primary causes of brain disturbances, a fact that relatively few people know (predominantly medical profession-als) and they are not talking about it loudly enough. Ford‘s mission is to tell the world about the damage gluten does to the brain and nerves.
As Dr. Ford pointed out, "After all, most people who were diagnosed with CD and who no longer eat gluten, don‘t have the disease. When you are eating gluten-free you are not on a diet, you are on a prescribed food list, a GF lifestyle. Diet means a short term, something you do for a little bit of time and then you go back on your SAD diet, your 'Standard American Diet' In other words GF is a lifetime choice, not a diet. So, you don‘t have a disease, and you don‘t have a diet!" Dr. Ford thinks that in time it will be commonplace for restaurants and hotels to have GF menus once the importance of the gluten syndrome is understood.
Dr. Ford stressed these five points in dealing with the gluten syndrome:
- Treat symptoms – not gut tissue.
- Gluten illness is much more than celiac disease.
- Celiac blood tests do not identify gluten intolerance or gluten sensitivity.
- Gluten symptoms come from neurological disease primarily, rather than from the gut as the gut is connected to the nervous system
- Gluten free is a new opportu-nity, not a life sentence.
As SACS‘ member Darel Magee said, "If Dr. Ford is right it scares me to think that the medical profession is still not listening. If they were, it would go a long way in making GF eat-ing safer in so many ways, proper enforcement of food labeling laws for example".
Potluck and SACS’ Election slated for February 27th
Our annual potluck will be held this year on Saturday, Feb. 27th at 11 a.m., 4700 N. Swan Rd. (See map p. 7) at The Journey. There will be a barrier with balloons and a sign to help mark the entry drive to the church. We haven‘t had a general election in three years, so try to come.
You will get to share wonderful food (all GF) with wonderful people. Children and non-member guests are always welcome. The business part of the meeting includes voting on bylaw amendments, officer elections and a report on SACS‘ activities as well as an outline of volunteer opportunities.
Copies of Dr. Ford‘s book, The Gluten Syndrome ($15) and a video DVD ($10) of his November presentation will be available for sale. All profits benefit SACS‘ educational programs.
Probably the best opportunity is that you get to bring your favorite GF dish or dessert to share with us. Don‘t forget to bring your recipe (or an ingredient list), so that those with multiple food intolerances can make wise choices. Coffee, tea and water will be provided, as well as table service.
Come early or plan to stay late and experience the opportunity of meeting and working with people in either setting up the potluck or helping clean up after.
NOTE: If you cannot--for any reason--bring a dish to the potluck, please come anyway as we always have plenty of food.
Fourth Friday GF Dining
If you can’t make the popular Lunch Bunch event that meets on the second Friday of each month, consider attending the new Fourth Friday Fun group created by SACS‘ member Jerry Heintze.
Jerry owns Tucson Night Out, a website devoted to reviews of dining and entertainment in the Tucson area, so he is an expert in selecting and arranging a fine dining experience.
The first Fourth Friday Fun event is Friday, Feb. 26th at Chopstix Fine Asian Dining, 8195 N. Oracle Rd, Oro Valley. (Just N of Magee on the west side of the road). Happy Hour 5:00 – 6:00 p.m. and dinner at 6:00 p.m. R.S.V.P to Jerry Heintze at Jerry@JerryHeintze.com, (520) 975-7322.
The host at Chopstix will be David Serafin, the marketing director who also oversees operations. He is very knowledgeable regarding the preparation and serving of GF meals. There will be special GF sauces and David will also stock up on GF beer for us.
Mark your calendar for the fourth Friday of each month and join other SACS members for other evenings of GF dining adventure around Tucson.
Your SACS in action
Your continued support and membership means that SACS is able to encourage CD research and fund educational outreach materials as well as provide a presence at community health-related events.
- Donated $1,000 to Dr. Alessio Fasano‘s CD research at the University of Maryland‘s School of Medicine
- Donated $1,000 to Dr. Peter H.R. Green‘s CD research at Columbia University Medical Center
- SACS has sent representatives to the Pima Council on Aging Health Fair since 2006
- Provided funds to pay for Dr. Ford‘s travel expenses so he could speak at our November meeting.
Chapter 15 Notes
- Farro, a tetraploid wheat, is not safe for celiacs according to the Celiac Disease Foundation Medical Advisory Board even though it is not as toxic as 'regular' wheat.
- Honey Baked Hams are now gluten-free whereas they used to have gluten in the glaze. To double
- Godiva Chocolates and products are not considered GF because, according to the company, "All of our chocolates may contain gluten due to our manufacturing process. An individual should NOT consume any of our products if they have a gluten allergy or any other restrictions for gluten consumption."
- Many flavors of Quaker brand rice cakes are now labeled gluten free as the company did extensive testing. Check each flavor.
- A recent large study in the Journal of the American Medical Association found that people with diagnosed, undiagnosed, and "latent" celiac disease or gluten sensitivity had a higher risk of death, mostly from heart disease and cancer. Read details from Dr. Hyman‘s blog at http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dontknow_ b_37908.html
- Progresso Clam Chowder (labeled GF) is available at Costco in eight packs for about $1.30 per can.
- Higher Vt. D levels means lower colon cancer risk. Read details: http://healthday.com/Article.asp?AID=635217
- CSA/USA: 877.272.4272, 9 a.m. to 4 p.m. Central Time. Their URL is: www.csaCeliacs.org.
- Membership changes? Notify us via the website or call 520.495.4829. Email the website if you wish to be added to or removed from our email notification list.
CD Autoimmune Comorbidity Series
By LINDSEY PEARSON, NMD, Family Medicine, Tucson Natural Medicine Center
One of my visions as a medical advisory board member is, that as a group, we are educated in the comorbid conditions of celiac disease (CD) so that we may empower people already diagnosed with CD to have an informed discussion with their health-care providers regarding risk and screening for these conditions and people with a comorbid condition to be screened for CD. To bring this vision to fruition, I would like to begin a series of articles on autoimmune comorbid conditions of CD.
The term comorbity means a medical condition existing simultaneously with another condition in a patient. Autoimmune refers to the body‘s immune system attacking itself. Celiac disease is an autoimmune condition and there are several autoimmune comorbid conditions of CD, including dermatitis herpetiformis, system lupus erythematosus (SLE), Hashimoto‘s thyroiditis, Grave‘s disease, Type 1 diabetes, rheumatoid arthritis, Sjogren‘s syndrome, and collagen vascular disease.
I often say in my family practice that if a patient has one autoimmune disease, we should screen for others. This, "If you have one autoimmune condition, you should check for others," philosophy influences how I approach CD and other autoimmune diseases. One of my findings while taking this approach was that by treating CD with a gluten-free diet, other autoimmune condition symptoms improve.
I am not sure of the reason, perhaps once the celiac disease is under control, the immune system decreases overall autoantibody levels, or the avoidance of gluten allows the gut to heal, thus reducing leaky gut syndrome and thus decreasing the autoimmune reaction – I can only hypothesize. This connection is acknowledged by Dr. Fasano in a 2006 article discussing systemic autoimmune disorders in celiac disease in the journal Current Opinion in Gastroenterology. This article discusses the immunology of CD and comorbid autoimmune conditions. The article may be viewed on MedScape Today at http://www.medscape.com/viewarticle/547107 (login required, you can create a free account).
I want to start this series by discussing Hashimoto‘s thyroiditis (HT) since it is the leading cause of hypothyroidism in the United States. HT is an autoimmune disease of the thyroid, a gland in the front of the neck just below the Adam‘s apple that is responsible for producing hormones that regulate metabolism and other physiologic functions. Auto-antibodies attack thyroid peroxidase (TPO) and/or thyroglobulin (TG) molecules located in the thyroid tissue causing inflammation that eventually leads to tissue destruction and the inability to produce thyroid hormones.
With a drop in thyroid hormone production, a person may experience symptoms of hypothyroidism including weight gain, depression, sensitivity to cold, fatigue, irregular menses, joint pain and stiffness, swollen face, hoarse voice, dry skin, myalgia, constipation, infertility, and hair loss. Untreated HT may lead to a grossly enlarged thyroid gland, referred to as a goiter.
The diagnosis of HT usually comes after an initial diagnosis of hypothyroidism, which simply means decreased thyroid functioning and is seen on routine lab work by evaluating thyroid stimulating hormone (TSH), and free T4 and free T3 levels. After the diagnosis of hypothyroidism, a physician should run autoantibody levels (TPO, TG, and TSH re-ceptor) and other labs to further evaluate the hypothalamus-pituitary-thyroid axis.
In HT, labs will reveal elevated anti-TPO and/or anti-TG antibody and/or anti-TSH antibody levels. Since TPO and anti-TG levels positively correlate to disease severity, they are used them to monitor a patient with HT, much like using tTG IgA levels to monitor tissue destruction in celiac disease. If you are diagnosed with hypothyroidism, make sure that your doctor specifically runs anti-TPO, anti-TG, and anti-TSH levels to check for a thyroid autoimmune condition.
The conventional treatment for hypothyroidism, including Hashimoto‘s, is thyroid replacement. There are synthetic agents such as Synthroid and Levothyroxine or desiccated thyroid such as Armour & Nature-throid by RLC Labs. I currently have over 20 patients with Hashimoto‘s in my practice. I usually start with the Nature-throid since it has both T4 and T3, which is the most active thyroid hormone. I work with patients to find a hormone replacement therapy that gives them the best symptom relief. A person with Hashimoto‘s should find a physician who knows about the different treatment options available and is comfortable working with patients to find the best option for them.
When a person is taking any thyroid replacement, thyroid levels should be monitored to evaluate if the treatment option is working properly. Finding the correct dosage is essential to reducing symptoms and making sure the dose isn‘t too high and causing a hyperthyroid state. People on thyroid replacement therapy should tell their healthcare provider all of the vitamins, minerals, herbs and supplements they are taking. Some minerals will assist in conversion of T4 to T3, thus improving the effect of thyroid replacement, while some herbs and vegetables inhibit thyroid function. Before beginning any treatment option, discuss these options with a qualified healthcare professional who is knowledgeable in that area.
Like celiac disease, Hashimoto‘s thyroiditis is an autoimmune condition that once diagnosed can be managed effectively to reduce the symptoms and progression of the disease. It is imperative to understand that a diagnosis of hypothyroidism is not the end of the medical investigative trail for your doctor. In the search for the underlying cause of the low thyroid function talk with your doctor about screening for Hashimoto‘s by running anti-thyroid peroxidase and anti-thyroglobulin antibodies.
Dr. Pearson is the head of SACS’ Medical Advisory Board and an owner of Tucson Natural Medicine Center, an integrative medicine clinic offering patients a new choice in healthcare. The practice is made up of Dr. Lindsey Pearson, a naturopathic medical doctor practicing integrative family and sports medicine, and Jeremy Breach, L. Ac., Dipl. O.M., a licensed acupuncturist and certified Chinese herbalist. They are located at 8230 East Broadway Blvd, Suite E2. Ph: 520.256.3733.
SACS joins forces with the Food Bank
By PAT HIRSCH
Did you know that just one pound of mesquite pods yields a whopping ¾ of a pound of gluten-free (GF) mesquite flour? That and many more GF facts were shared with the public when Marana Heritage Farms [which is part of the Marana Community Food Bank (MCFB), a branch of Community Food Bank (CFB)], held a Mesquite Cookie Workshop on Jan. 9th. I especially wanted to attend because their coordinator Maggie Barnes‘ invitation read, "Learn about a gluten-free diet and how it may be healthy for you!".
They presented tips on how and when to harvest (July through September), how to dry and store your own mesquite pods until grinding season (October and November) and where to bring them for inexpensive grinding in a GF mill. This information was given in the first part of the session on how to make the GF cookies.
Maggie and CFB researcher Patricia Rojas had us make three different flour blends which were various combinations of GF flours such as sorghum, potato starch, garbanzo bean, brown rice, corn or tapioca. For efficiency, you could make and store these blends for future use. Labeling these flour blends right away is very important.
Each blend behaves differently when mixed with mesquite flour and the other dough ingredients. It was evident that Maggie and Patricia had worked extremely hard to get the best combinations for optimum taste and texture. Each recipe produced deliciously different characteristics yet they all had that distinctly sweet mesquite flavor.
This event became a way to share reasons for eating 100% GF. There were about a dozen participants, some of us from SACS. Others were there because they felt better and healthier without gluten. It is exciting that CFB leaders are becoming more aware of the challenges and solutions surrounding eating 100% GF! My goal is to continue this trend by networking with CFB on SACS trends, events, CD research and news at every opportunity. If you have ideas on how to encourage the CFB to provide GF food, please let me know by emailing me at firstname.lastname@example.org or you can call me at home: 744-3862 or cell: 971-9595.
12375 N. Heritage Park Drive, Marana, Arizona
Contact Maggie Barnes at 520.682.3837 or email her at email@example.com for:
- GF recipes using mesquite flour
- Information on buying fresh, or-ganic vegetables from the farm
- Exploring volunteer opportunities
- To offer donations of materials for farm operation or to donate food for the CFB
SACS volunteers needed
Several months ago, I read an article in our newsletter asking for help. SACS was in need of a Gluten Free Food Faire Vendor Coordinator. I immediately set out to volunteer for the position and found it to be a fulfilling commitment! Not only have I met terrific people through our group, but I am also learning about the myriad of terrific companies that make GF foods. It never ceases to amaze me how many of these companies are eager to help SACS.
What can you do to help? Everyone is good at something whether it is data entry, organization, leading or following. Volunteers are the key to SACS’ success. We need volunteers for many tasks and can match you to a position based on your interests and skill set. The tasks range from simple to complex and from doing a one-time task to being an ongoing board member. We can always use your help. Though there are volunteers needed for a variety of positions, our chief concerns at the moment are filling the following two positions:
President Elect: Assist the president for one year with the possibility of filling the President‘s position at the end of the one-year term.
Leader of Cel-Kids: Would need to be knowledgeable as to what kinds of foods are safe for children to consume and able to give parents/schools advice regarding children who are diagnosed with Celiac Disease or Gluten Intolerance.
If you are in volunteering for either of the above positions or to volunteer occasionally, please call me at 219-7076 or email me at firstname.lastname@example.org. I look forward to hearing from you!
Picazzo’s is coming! Picazzo’s is coming!In late March Picazzo‘s is scheduled to open a Tucson location--building codes and inspections permitting--at the 2,700-square-foot space at 7850 N. Oracle Road, Oro Valley that used to be the Mediterranean Garden Restaurant. If we are lucky, Picazzo's might be at the GFFF, too. SACS will notify members via the email list when Picazzo's is definitely open for business.
Mark your calendar
- Feb. 24: 1 p.m. Roundtable, Ward 6 City Hall, 3202 E. 1st St
- Feb. 26: Fourth Friday, Chopstix, 8195 N. Oracle Rd, 5 p.m. for drinks, dinner at 6 p.m.
- Feb. 27: 11 a.m. SACS‘ Annual Potluck & General Meeting, The Journey (Evangelical Free Church), 4700 N Swan Rd., 11 a.m. to 1 p.m.
- March 12: noon, Lunch Bunch, Location TBA
- March 19: 1-3 p.m., Exec. Board Meeting, Ward 6 City Hall, 3202 E. 1st St, SACS members welcome
- March 24: 1 p.m. Roundtable, Ward 6 City Hall, 3202 E. 1st St
- March 26: Fourth Friday, Dining location TBA, 5 p.m.
- April 9: noon, Lunch Bunch, Loca-tion TBA
- April 16: 1-3 p.m., Exec. Board Meeting, Ward 6 City Hall, 3202 E. 1st St, SACS members welcome
- April 23: Fourth Friday, Dining location TBA, 5 p.m.
- April 24: 9:00 a.m. - 1:00 p.m. Gluten Free Food Faire, Christ Community Church, 7801 E. Kenyon Drive, (see map online)
- April 28: 1 p.m. Roundtable, Ward 6 City Hall, 3202 E. 1st St
- May 14: noon, Lunch Bunch, Location TBA
Mini Cheese Tarts
(recipe courtesy of Living Without)
Serve these savory gluten-free treats on their own or alongside steaming bowls of chili. These tarts can be made ahead and frozen. Bring them back to room temperature before fill-ing.
- 1 (22-ounce) package gluten-free bread mix (with yeast)
- 2 cups grated cheddar cheese or
- 8 ounces goat cheese (chopped) or dairy-free cheese
- 1 cup raspberry jelly or pepper jam
- Preheat oven to 350 degrees F.
- Prepare a gluten-free bread mix according to package instructions. Press a tablespoon of dough into lightly oiled mini-muffin tins. Dough does not have to come up the sides evenly and doesn‘t have to rise before baking.
- Bake in preheated oven for 10 to 12 minutes or until golden brown.
- Place a teaspoon of grated cheddar cheese or a small piece of goat cheese or dairy-free cheese substitute in each cup. Top with a bit of raspberry or pepper jam.
- Increase oven temperature to 400 F. and bake 3 minutes or until cheese melts. For dairy-free guests, bake tarts fully, about 15 minutes in a 350-degree oven. Once they cool, fill them with a commercial bruschetta mixture or a blend of sautéed onions and mushrooms.
Low-tech CD immune therapy
So, just how badlydo you want to enjoy that donut, dine out and choose anything on the menu, or eat a sandwich not using bread apparently baked from finely-ground sawdust?
There are two approaches to developing a cure/pill/diet alternative for CD: Enzyme Therapy would supplement a gluten-free diet and protect patients from occasional gluten expo-sure. Immune Therapy is another approach that would train the immune system to tolerate gluten and allow patients to eat a regular diet.
This second category of treatment, known as immunotherapy, is more investigational and not so far along in the research process. It would allow patients to eat a regular diet by quelling immune response in the gut. This response is driven by immune cells known as T-cells, which react when other immune cells display gluten fragments on their surface.
An Australian company is packaging the gluten peptides that trigger this immune response into a vaccine that will desensitize the immune reac-tion. The theory, which works in animals, is that by introducing these peptides through injections under the skin rather than through the gut, the immune cells learn to tolerate them and no longer display them to the T cells. That can theoretically prevent or turn off the reaction that damages the gut.
Phase I safety trials of this vaccine, Nexvax2, are to be completed in mid-2010. Anderson, the founder of the company said, "If we can figure out how to give the drug, how frequently and when we need maintenance therapy," he added, "then we can use the same principle to explore treatments for other autoimmune diseases." Several other groups are also developing vaccines for celiac disease, but this one is furthest along.
Another, albeit low-tech immunotherapy, approach might require just one inoculation — of the hookworm Necator americanus. It is known that a non-pathogenic hookworm introduced to the gut can relieve asthma symptoms.
Researchers suspect that it is because we evolved with intestinal parasites that trained our immune sys-tem to tolerate environmental irritants, but our hygienic modern living has deprived us of this beneficial symbiosis. Researchers at a Brisbane Hospital in Queensland, Australia, tested the effects of hookworm inoculation on 20 patients with CD to see if it would blunt the immune response to gluten. In addition to hoping to provide relief for celiac patients, the researchers want to learn if this could be an effective therapy for inflammatory bowel disease and Crohn's disease.
When the Phase II trial was over and the patients were offered a medication that would kill the parasites, they all opted to keep their hookworms.
The study, which is not complete as yet, did not address the obvious dangers of long-term hookworm infestation. Run a Google Image search for hookworms and view their skin manifestations if you want to truly appreciate the 'ick' factor of this remedy.
Gritty bread and navigating the minefield of new restaurants does not seem all that insurmountable now, does it?
SACS 2010 Potluck, Feb. 27th
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