Sure Foods Living - gluten-free and allergen-free living

This is important! All type 1 diabetic patients, regardless of the presence of symptoms, should be regularly screened for celiac disease. This was the message at The Endocrine Society 92nd Annual Meeting, based on findings in a new study of Type 1 diabetics.

I’ll break down the numbers for you, as I understand them:

• 493 patients were screened for celiac disease within roughly 3 months of being diagnosed with type 1 diabetes.
• 25 of these patients had positive celiac blood tests on their initial screening. Of those who tested negative the first time around, 14 tested positive the second time, making the total number of patients with a positive blood test 39, or 8% of those screened.
• Of the patients who tested positive on the blood test, 12 had positive biopsies (one showed a positive biopsy 5 years after being diagnosed with Type 1 diabetes.) 7 have not been biopsied.

Now, these numbers are compelling, but I still believe the number of those with a gluten problem is higher. We know that the tests for celiac miss people. A lot of people. I wonder if the gluten intolerance or sensitivity, undetected by mainstream tests, contributed to the onset of  diabetes. The diabetes gets noticed first, because doctors understand it, are aware of it, know how to diagnose it, and to treat it, but perhaps it is another symptom of gluten wreaking havoc on the body.

Having diabetes is hard. Having celiac is hard. Having them both — well, I can’t speak from personal experience, but I imagine it is doubly hard. I can also imagine that someone with type 1 diabetes or a parent of someone with type 1 diabetes would not want to think about having celiac too. But I hope that my urging to pay attention to gluten will get someone’s attention out there.

Undiagnosed celiac disease or gluten intolerance can lead to very serious problems. As stated in an article about the study, “Undiagnosed celiac disease might cause significant morbidity… Short-term complications include growth disturbances, weight loss, and difficulty achieving glycemic control in type 1 diabetics. Long-term complications can include small bowel malignancy.” And these are just a few of the many symptoms and associated conditions related to celiac disease and gluten intolerance.

To read articles about the study, go to the Global Diabetes Community or to Medscape.com (sign up for a free account).

Does anyone have a personal story about gluten and diabetes?

It is common knowledge now in the gluten-free community that most oats are contaminated with wheat. For this reason, certified gluten-free oats have become available and are increasingly being used in cereals, bars and cookies. I have wondered about other grains — why would oats be the only ones when surely other grains are grown near, processed, stored, and transported with wheat? Though I wondered about it, I didn’t pursue it, probably because I never really wanted to know the answer!

The answer is here, and it’s not good news. In a study conducted by registered dietitian Tricia Thompson, Anne Lee of Schar, and Thomas Grace of Bia Diagnostics, 7 of  22 (32%) samples of naturally gluten-free grains, seeds and flours tested contained mean gluten levels above 20 ppm with amounts ranging from 25 to 2,925 ppm. What does this mean? Some foods we think of as being naturally gluten-free actually contain higher than the proposed FDA amount of allowable gluten (20 parts per million or ppm).

This poses a problem for the FDA’s proposal regarding gluten-free claims on food. Under the proposed FDA rule, gluten-free oats can have a gluten-free claim on them because some oats are contaminated with wheat and are not gluten-free. An “inherently gluten-free” food, on the other hand, such as apples, would not be allowed to have a gluten-free claim on them unless it was stated that “all apples are gluten-free” or something to that effect. Apples are obviously gluten-free so putting a gluten-free claim is considered misbranding of those particular apples. But what about these other grains?

Gluten-free grains, seeds and flours that many of us eat every day were found to be contaminated with wheat. The most contaminated samples in this study were soy flour, millet flour and sorghum flour. Thompson notes on her blog entry about the study that “sampling was not large enough to make any assessment on the overall percentage of contaminated product. Sampling also was not large enough to make any inferences on the specific grains, flours, and seeds more or less likely to be contaminated.”

This study might open a can of worms for the FDA, which must decide what a gluten-free label claim means. It also opens a can of worms for the gluten-free community… what are we to do now? Trace every grain, seed and flour, including those used as ingredients in gluten-free products, back to its origin to ensure that it has not been contaminated with wheat? Let’s hope that testing continues and that more information becomes available regarding this issue.

Read more about the study:
Abstract from the Journal of the American Dietetic Association
Contamination of Naturally Gluten-Free Grains

Chalk this one up to Weird Food Reactions that your doctor doesn’t know about…

I went out the other night with some girlfriends and as we were deciding what to order, one of them complained to me that everything she has been eating for three days tastes bitter and leaves a metallic aftertaste. Worried that this was a sign of a health problem, she had emailed her doctor who recommended she check with her dentist first. The doctor also suggested that perhaps the bitter taste was a result of her body detoxing because she had started a gluten, dairy and sugar-free diet. (huh? makes no sense to me.)

This is where I come in:
“Did you eat pine nuts?” I asked her.
“Yes… why??”
“It’s the pine nuts.”
“What? The pine nuts? Yes, well, I did have a lot of pine nuts a couple of days ago. It’s the pine nuts?”
“Yep.”
“HOW do you know that?”
“Because it happened to me.”

About two years ago I experienced the same thing. I suddenly had a bitter taste in my mouth whenever I ate something. Didn’t matter what it was — something sweet or sour, fruit, vegetables, wine or chips. Every single thing I ate tasted bitter. After it went on for a few days, I feared that this was some permanent condition and I would never enjoy eating food again! I finally turned to Google and found a forum of people discussing the bitter taste and they all realized that they had eaten pine nuts in the days prior to the bitter taste starting. I was surprised to find the cause, as were all the people in the online forum — and I was relieved! It lasted a week, and was really annoying, but at least I knew it would go away. And I didn’t pay to see any specialists!

I’m not sure if I have eaten any pine nuts since then. We don’t have any nuts in our house due to my daughter’s nut allergy, and I don’t remember if I have eaten them out at a restaurant. I had sort of forgotten about this until hearing my friend’s story, and wondered how common this really is. Back to Google again to find out more…

It turns out that quite a few people have written about “Pine Mouth,” as they began calling it, since my first query years ago. A search of the medical journals turned up a 2010 article in the Journal of Medical Toxicology that concluded: “‘Pine mouth’ appears to be an emerging problem.”

The symptoms generally come on 2 days after ingesting the pine nuts, and can last up to 2 weeks! Though there has been no formal connection made, it seems that the people who were affected by pine mouth ate pine nuts that were imported from China. The China Tree Nut Association even held a national pine nut conference on November 24th, 2009, to try to find out where the bitter taste comes from!

Trader Joe’s and Costco brands were mentioned often in the forums that I read. No conclusion has been made as to WHY this happens and whether some people are affected by it, while others aren’t.

So, if you’re pining for pine nuts, be aware that you might just be left with a bitter taste in your mouth!

The FDA is asking for our help to define what a “gluten-free” label on a food product should mean. Currently there is no regulation pertaining to the use of the term “gluten-free” on a label. It is used voluntarily by food manufacturers without laws about the amount of gluten allowable or what kind of testing should be conducted to verify the gluten content.

Some companies do voluntarily test their products for gluten, and the Gluten Free Certification Organization (GFCO) performs such testing to ensure that gluten levels are at the lowest levels possible based on the technology available, at less than 10 parts per million.

The FDA has proposed that a product would be considered gluten-free if the gluten content is less than 20 parts per million. They have not decided exactly on the language that will be used.

Now is your chance to give your input! The FDA is conducting a survey about people’s eating and grocery shopping habits with regards to gluten-free foods. Perhaps your answers can help shape the upcoming regulation.

“The U.S. Food and Drug Administration (FDA) is interested in knowing how consumers understand gluten-free food labels. Your responses will help FDA make sure that gluten-free food labels are clear and informative.”

To take the survey: www.synovate.net/forgluten UPDATE 4/16/10: The survey is closed already! Here is the message that GIG received from the FDA: “Thank you very much for getting the word out about the FDA gluten-free survey. The response has been overwhelming and we have met our quota in just a few days. The survey will shut down in a few hours but in the meantime, those who try to respond may receive a “not qualified” message. I apologize for that.”

The survey is a little long, and the questions are very specific. The questions pertain to people with celiac disease, people with non-celiac gluten sensitivity and people who shop for people that are on a gluten-free diet. I will be interested to know how this all turns out!

I went to college with no dietary restrictions. I ate in the dining hall, free to choose whatever I wanted. There is enough to think about in college without having to worry about food allergies. I can’t imagine how hard it must be for young adults today who have to manage their diets in addition to everything else.

The number of teenagers with food allergies entering college is on the rise. And according to a study done by the Journal of Allergy and Clinical Immunology, students with potentially life-threatening food allergies are at an increased risk for having severe reactions on college campuses. The good news is that colleges and universities are becoming better prepared with food allergy action plans, accommodations and better food choices for students.

An article is USA Today, “Colleges accommodate more students with food allergies”, highlights some of the ways students’ needs are being met.

A wonderful resource for college kids with food allergies is the Food Allergy and Anaphylaxis Network (FAAN). Their FAAN College Network has a great list of Frequently Asked Questions for young adults entering college, and a database search of colleges and their “Food Allergy Approach.”

FAAN also has a website dedicated to teens with food allergies, www.FAANTeen.org.

Kids with Food Allergies has an article called Allergies and College Life with advice from a student who went through the process herself. One of her main points, which is a great one, is to plan early.

If anyone has tips for attending college with food allergies, please share them!

At the beginning of this year, I wrote about a small study that connected Restless Legs Syndrome with Celiac Disease. A new larger study, that will be published in the medical journal Digestive Diseases and Sciences, confirms that screening for celiac disease and implementing a gluten-free diet can help many people suffering from Restless Legs Syndrome.

Here is the study in brief:

PURPOSE: Celiac disease may be associated with restless legs syndrome (RLS) because of an association with iron deficiency. Often, RLS negatively affects quality of life but may remain undiagnosed. This study evaluated the association between celiac disease and RLS.

RESULTS: The incidence of RLS among 85 patients with celiac disease was 35%, with a prevalence of 25% compared with 10% of spouses (P < 0.02). In 79% of patients with RLS and celiac disease, neuromuscular symptoms began during or after onset of gastrointestinal symptoms. Iron deficiency was present in 40% of celiac patients with active RLS compared with 6% of patients without RLS (P < 0.001). After 6 months of a gluten-free diet, RLS symptoms improved in 50% of 28 patients.

CONCLUSION: Screening for celiac disease in patients with RLS is important since this commonly overlooked silent disease may be a correctable factor for some patients with idiopathic RLS.

The much anticipated book The G-Free Diet: A Gluten-Free Survival Guide by Elisabeth Hasselbeck is being released! Are you wondering whether to read it or not? Perhaps my review can help you decide!

First, what I thought I was going to think…

I must admit that I had a preconceived notion about what the book was going to be like. My skepticism had nothing to do with her, or her personality, or what she says on the View, or what people think of her, because frankly, I don’t have time to watch TV at 10am or read about her comments on the internet. My preconceived notion was based simply on the title “The G-Free Diet.”

The cutesy title reminded me of an article I wrote in which I pointed out that maybe the reason people couldn’t embrace the gluten-free diet is that the word “gluten” just isn’t cool enough for people and that we need to start calling the gluten-free diet something else. (I jokingly offered “the no g-carb diet” as a solution.) Turns out I might have been right and a celebrity has given it a new name! Elisabeth uses the term “the G-Free Diet” so many times in the book that by the end I actually find myself getting used to it. Another phrase she uses: “G-Full” — referring to foods that are full of gluten. Not bad.

So back to the preconceived notion… the cutesy title and cutesy cover made me think that the book was going to be cutesy too. It wasn’t!

What I thought…

I found this book to be practical and personal. It is practical, with understandable medical and diet information, and personal, with stories meant to illustrate points and make us feel like she is just like us with the same worries and anxiety about the diet that we have (except that she hangs out with Whoopi Goldberg and Prince Charles!). She also maintains a positive but realistic attitude throughout, which is the tone that I also try to convey on this website.

Perhaps I liked this book too because I related to her story. My celiac story is very similar to hers in terms of symptoms and the journey to diagnosis. In fact we were both diagnosed in 2002, after returning from a time away from the United States — she 39 days in Australia for Survivor: Outback, me 25 days in India for my honeymoon. We both were on a gluten-free diet without even realizing it, our bodies repaired themselves, and when we returned to our wheat-laden American culture, our bodies struck back with a vengeance. Another similarity — we both figured it out before doctors did. Our recoveries were similar too. She mentions jokingly that she can’t believe her now-husband continued dating her despite all her health problems — I have also joked that I can’t believe my husband married me! (I was diagnosed 3 months after our wedding!)

I really liked…

The chapter called “What’s Mine is Yours (Well, Sort Of!)” Elisabeth is the only one in her family that eats gluten-free, and she provides helpful information for what she calls the “modified G-free kitchen” where both gluten-free and gluten-containing foods are prepared. If you are new to the diet and haven’t converted your entire family to your way of thinking yet, the information provided in the book will make the shared kitchen seem do-able. Luckily I don’t have to take all of these extra precautions, as my kitchen is completely gluten-free. (My husband eventually adopted my diet because he was feeling so much better when he was gluten-free and I have decided to raise my children gluten-free.) I feel that if you can get your kitchen to be as gluten-free as possible, it makes things so much easier and makes you feel more relaxed — at least you can feel at ease in your own home!

The chapter “Out on the Town” about dining out. There are some very good restaurant tips and the section called “Deciphering the Menu: The G-Free Detective” defines menu terms that are helpful for everyone to read. Don’t expect to find recipes or many menu ideas in this book. There are a couple Italian recipes from her mother, but this is not a recipe book.

The chapter called “Throw Me a Bagel!” about living with someone who is gluten-free. Rarely have I seen tips for the person who lives with a gluten-free person (”GFG” she calls it, for Gluten-Free Gal or Guy). There is some great advice addressing such things as compassion, adaptability, preparedness, cleanliness and selflessness.

The section “Translating Ingredients” for understanding how to read cosmetics and personal care product labels. This is something that often gets overlooked by people on a gluten-free diet.

I really didn’t like…

The fact that there is a chapter named “G-Free and Slim As Can Be!” which sounds like the whole chapter is promoting the use of the gluten-free diet for weight loss. The chapter is actually not about that at all and points out that once people are on a gluten-free diet and are forced to read labels, they become aware of what they are putting into their bodies and generally become healthier eaters overall. The chapter is more about nutrition and awareness of food. There are only a few sentences that refer to the fact that people might try the diet to lose weight — it’s unfortunate that the title doesn’t reflect the real content of the chapter.

I beg to differ…

In the chapter “How Not to Be A Party Pooper,” Elisabeth recommends that if someone asks about your diet while at a party, “briskly change the subject!” and “Whatever you do, do not let people dwell on your diet — it’s just no way to enjoy your night out.” She definitely has a point — if you don’t want to talk about it, by all means, you shouldn’t have to. I have a different approach though. I mention my diet and then I wait. If I sense that people aren’t interested, I go ahead and change the subject or they will anyway, but I don’t mind talking about it, and I have found that these times open a door for people to ask you questions and voice their concerns about their own health. In fact, sometimes I feel like a magnet for people with health problems. But really, it’s because I open the door for them… and invite them in.

I’m glad she included…

The foreword by Dr. Peter Green. Also, I’m glad that in the foreword, Dr. Green talks about non-celiac gluten sensitivity and states, “Those with gluten sensitivity in the absence of celiac disease have a great difficulty getting satisfaction from the medical community. Without an abnormal biopsy, there is difficulty among many physicians accepting such a diagnosis. I, however, regard the diagnosis as valid, providing that celiac disease is excluded.” This is a different take than he had in the past when he referred to the gluten-free diet as unnecessary torture without a diagnosis of celiac disease. If you are a regular reader of mine, you know by now that I think outside the celiac box, so I was glad to see that gluten intolerance has been acknowledged in the book by both Dr. Green and Elisabeth.

And in her last chapter, Elisabeth tackles the connection between Autism and the Gluten-Free Casein-Free (GFCF) Diet. I believe that she did it well, citing studies and quoting doctors to support the idea that a diet change could be beneficial for some autistic kids. She made the connection understandable and at the end of the chapter, points out (and I wholeheartedly agree) “If eliminating gluten and casein from your child’s diet can even slightly reduce the severity of his ASD, why not talk to a physician who could help you make this change?”

Some picky notes (I couldn’t just let these go!)…

Blue Cheese
Elisabeth recommends staying away from blue cheese, but there are many brands that are gluten-free. See Is blue cheese gluten-free? for a list.

Glucose Syrup
Although it can be made from wheat, studies have shown that it is gluten-free. See Is glucose syrup gluten-free? for more information.

Sticky Rice
The book says that the sticky rice in sushi might contain added gluten. I know a lot of you enjoy sushi, so don’t freak out! The sticky rice (also called glutinous rice) does not contain gluten itself, despite its misleading name, and I have never heard of gluten being added to it. Things that are added to sticky rice are sugar, salt, rice wine and rice vinegar, all of which are gluten-free. There are other foods to watch out for when eating sushi (soy sauce, imitation crab, sauces, roe, miso, tempura, tea), but the sticky rice is not one of them!

Online Stores
I wasn’t impressed with the online stores resource list in this book. I understand that websites and stores change a lot, but there were some basic “oopsies” that I found. In the middle of the book (p.74) she recommended www.glutenfreegrocer.com as an online store — well, it’s just someone’s Amazon store, like I have here. Also, in the resources list at the end of the book, she recommends www.glutenfreemarket.com, which is a domain name that’s for sale (you can make an offer!) Given that few resources were even listed, it seems like they should have been checked before going to print.

Overall…

I think this is a really good guide for someone who has just been diagnosed with celiac disease or is just starting a gluten-free diet, or even for those that have been on a gluten-free diet for a while but haven’t completely mastered it yet. I am surprised I liked it so much. I may even start saying I am “G-Free!” Or maybe not.

I would like to send out a big THANK YOU to the brave and patient families who have volunteered for the food allergy studies that are currently underway. I truly believe that their devotion will result in a treatment that will allow my daughter to be free of her severe food allergies someday. I wish you success!

There are currently three types of food allergy studies being conducted under doctor supervision (don’t try these at home!):

• Oral immunotherapy: Patients build immunity to food allergen by swallowing gradually increasing amounts of the foods.
• Sublingual therapy: Patients build immunity by putting drops of allergenic proteins under the tongue (this allows for faster absorption into bloodstream).
• Food allergy herbal formula-2: “FAHF-2″ is a pill that contains nine botanical herbs, including ginseng and oil made from cinnamon tree bark. I wrote about this one: Could Chinese herbs be used to treat asthma and food allergy?

To learn more about these studies and also about the sacrifices that some families have made to be a part of the studies, read USA Today’s story: New strategies may help overcome food allergies.

Related articles:

• What is anaphylaxis?
• Why are food allergies on the rise?
• How many outgrow nut allergies?
• What some ignorant people think about food allergies
• Will your child outgrow egg allergy?

One of the most difficult things about food allergies is that there is no sure treatment and the only way to avoid a reaction is to avoid the food that causes it. As a parent of a child with severe food allergies, I can only hope that a cure will be found so that I don’t have to worry for the rest of her life about what would happen if she ate the wrong thing. Ah, the freedom that would bring.

The good news is that there is progress being made in the current research that is being conducted on food allergy. There has been some progress made in using desensitization to treat peanut allergy. This means that peanut-allergic kids were given little doses of peanut to increase their tolerance to it. All the kids were eventually able to tolerate at least 10 peanuts! This is indeed progress and larger studies will now be conducted.

I was especially intrigued by an entirely different approach to treating asthma and food allergy — one that uses Chinese herbs to prevent a food allergy reaction. Researchers led by Dr. Xiu-Min Li,  Associate Professor of Pediatrics and Director of Center for Chinese Herbal Therapy for Allergy and Asthma at Mount Sinai School of Medicine, developed two different herbal formulas.

One is called Anti-Asthma Herbal Medicine Intervention (ASHMI). In the first studies, it was found that patients showed improved lung function after taking the formula. They also found that the herbs proved safe for those taking the formula. Longer-term studies need to be conducted still.

The other herbal formula is called Food Allergy Herbal Formula 2 (FAHF-2) and is made up of 9 herbal extracts. When used on mice allergic to peanuts, this formula completely blocked peanut-induced anaphylaxis, and protected the mice from having a reaction for 9 months after the treatment (a quarter of their lifetime)! Studies using the formula are now being conducted on humans.

Dr. Xiu-Min Li points out in a news article about her that food allergy is rare in China and that asthma is far less common than in the United States, and perhaps that is due to the fact that China has used plants, which may be more effective than the drugs used here, to promote health for thousands of years. I hope her work proves she is right! You can read more about how the Herbal Remedy Could Halt Peanut Allergy.

Related reading:
How many outgrow nut allergies?

There was a very well-written article in the New York Times on Feb 2 called Telling Food Allergies From False Alarms. The article brings up the fact that some families are unnecessarily avoiding some foods because of falsely positive food allergy blood tests, which can show that someone is allergic to a food when they actually are not. If a person has no history of food allergy, never had a reaction, nor any reason to suspect a food allergy, then a blood test may not be a reliable way to diagnose food allergies.

A doctor in the article is quoted as saying, “The most important question in diagnosing food allergy is whether the child has tolerated the food in the past.” Does the child have a history of food allergy? In my case, my daughter as a baby had eczema all over her face whenever she would eat eggs. That’s why I brought her in for food allergy testing in the first place, never expecting or even having much knowledge of food allergies before that. She had the skin-prick tests for various foods, and came up positive on several. She subsequently had a reaction (accidentally) to both eggs and cashews, two of the positives. She has never eaten some of the other foods that she tested positive to — shrimp, crab, peanuts — but given the seriousness of shellfish and nut allergies, we were advised to strictly avoid them.

My allergist told me the exact same thing as the doctor quoted in the article: “The only true test of whether you’re allergic to a food or not is whether you can eat it and not react to it.” Of course, you don’t want to be experimenting at home if you really suspect a serious food allergy, but food challenges can be done by an allergist in a medical setting.

Yesterday, we took my daughter in for a blood test for the same foods that she tested positive on the skin-prick test. Our allergist wants to use the blood test as a way to confirm or question the results of the skin-prick test, to use it as another tool for knowing what she may be allergic to (besides the obvious ones that she has reacted to). Once we get the results of the blood test, we may start doing food challenges for those foods that seem borderline or no longer show positive results. It is possible to grow out of some food allergies.

“Even when a food allergy has been confirmed, parents should have children retested, because many allergies are outgrown, particularly in the cases of milk, eggs, soy and wheat,” the article points out. I am certainly hoping that is true for my daughter!

I commend the New York Times for publishing a logical piece of writing that attempts to make sense of the rise in food allergy diagnosis, rather than the parent-blaming opinion put out by another news agency.