The Taylor Family Foundation – amazing what they do for special needs kids!

Posted on August 21st, 2012 by Alison | Posted in Camp, Celiac Disease, SF Bay Area | ADD A COMMENT »

I am proud to say that I know Elaine Taylor. Elaine is warm and kind, and has celiac disease like me. I met her through various gluten-free groups and events because she runs Camp Celiac, a camp for kids who must live gluten-free. You see, kids who must be on a special diet often can’t attend regular camps, or if they do, special preparations and accommodations must be made, and the child inevitably feels singled out or embarrassed or left out because they can’t eat what the other kids are eating. At Camp Celiac, kids don’t have to worry about the food, and get to spend time just being kids.

But Elaine and The Taylor Family Foundation do much, much more than run Camp Celiac. In fact, Camp Celiac is one of the newer additions in a 20 year history of offering camps to kids with special needs, including:

  • Asthma
  • Heart disease
  • Autism
  • Hemophilia
  • Bi-Polar disorder
  • HIV/AIDS
  • Brain tumors
  • Congenital Hand Deformities
  • Skin disease
  • Crohn’s, colitis & IBD
  • Pediatric cancers
  • Developmentally delayed
  • Preschool burn survivors
  • Deafness
  • Surviving the loss of a parent

And here’s the incredible part: these camps are FREE to the families of the kids with special needs. The Taylor Family Foundation raises money to be able to allow families to send kids from northern California to this camp. In addition, they provide services throughout the year. Their annual Day in the Park fundraiser is coming up on August 26th, and they accept donations throughout the year.

I had to write this post after watching this video on ABC7 — you will have a better idea of how special these camps are after viewing it.


Gluten and skin diseases

Posted on June 19th, 2012 by Alison | Posted in Autoimmune Disease, Celiac Disease, Symptoms | Read 7 Comments - Add Your Own »

The association between celiac disease and the skin condition Dermatitis Herpetiformis has been understood for quite some time, but a newly published article outlines the associations between gluten and other skin manifestations. The article “Celiac Disease and Dermatologic Manifestations“, put out by the Division of Dermatology in Florence, Italy, concludes that anyone suffering from psoriasis, alopecia areata, chronic urticaria, Hereditary angioneurotic edema, atopic dermatitis, or Cutaneous Vasculitis be screened for Celiac Disease.

They also reviewed other skin diseases for their possible relationship to gluten, and in the conclusion they state: “Although in none of these cases has been effectively demonstrated a pathogenetic link between the diseases, some of these associations are more common. Particularly lupus erythematosus, dermatomyositis, vitiligo, Behc¸et disease, linear IgA bullous dermatosis, and also both skin and mucosal manifestations of lichen. Besides the importance of the diagnosis of DH [Dermatitis Herpetiformis], that is virtually always associated to CD and can be considered a specific marker of the disease, even the identification of the other dermatological conditions associated with gluten sensitive enteropathy could be significant, highlighting the importance of a close collaboration between gastroenterologists and dermatologists. In fact,many skin diseases reported in this paper are actually more common in the celiacs or show atypical clinical presentation often associated with resistance to standard therapies in those patients.”

If you or someone you know is suffering from a skin condition, think about gluten. This article focuses on celiac disease, but as those of us in the gluten-free community know, these same symptoms apply to people with gluten sensitivity.

The entire review article can be accessed here: Celiac Disease and Dermatologic Manifestations.

Please leave comments about your experience with gluten and skin.


People with celiac disease have increased bone fracture risk and other bone problems

Posted on January 9th, 2012 by Alison | Posted in Celiac Disease, Symptoms | Read 4 Comments - Add Your Own »

For anyone with bone density problems, bone fractures, osteoporosis, osteopenia, osteomalacia, bone pain or any other bone-related problems, consider getting tested for celiac disease or gluten sensitivity. This is a common symptom that often gets overlooked.  Two recent studies confirm the negative effects of celiac disease on bone health.

A case study of a 29-year old man with no gastrointestinal complaints came in with back pain. It was discovered that he had a compression fracture in his spine, and he reported that he had several bone fractures as a child. Tests revealed low bone density, but that vitamin D levels were normal, despite villous atrophy (damage to his intestines, often preventing the ability to absorb nutrients).

The authors of the report stated that ”Celiac disease is often a cause of low bone density and patients with celiac disease have an increased fracture risk, a hazard ratio of 1.43 or 43% increased risk when compared to age-matched healthy populations.” They concluded, “We emphasize considering celiac disease in all patients with idiopathic [arising spontaneously or from an obscure or unknown cause] low bone density even if vitamin D and PTH [parathyroid hormone] levels are normal.”

Another study submitted by doctors in Amsterdam profiled a 29-year old woman bound to a wheelchair who had progressive bone pain, short stature, difficulty walking, scoliosis, softening of the bones, low bone mineral density and poor dental condition. Testing showed that she had villous atrophy, antibodies against gluten, and extremely low vitamin D and low calcium, and was deficient in several other vitamins. She had already been diagnosed with celiac disease at age 17, but apparently wasn’t following the gluten-free diet or was at least getting some amount of gluten exposure. The doctors treated her for 14 days with intravenous calcium and vitamin D, and “the symptoms of the patient rapidly improved; the bone pain decreased, muscle strength and physical performance improved markedly, and she was able to walk unassisted.” Incredible! After 5 1/2 months they found that her bone mineral density had indeed improved.

Have you had bone problems as a result of celiac disease or gluten intolerance? Are you looking for answers to your bone-related health issues? Leave a comment so that your experience can help others or others can help you!

Related reading: Gluten and bone health


Gluten in cosmetics – should you be concerned?

Posted on November 28th, 2011 by Alison | Posted in Celiac Disease, Cosmetics, Gluten Intolerance | Read 12 Comments - Add Your Own »

People with celiac disease, gluten intolerance or a wheat allergy are accustomed to reading ingredient labels to know what they can or cannot eat. But what about cosmetics? Is it necessary to avoid gluten in makeup or shampoo? And if so, how easy is it to spot on a label?

Whether celiacs and gluten-sensitive people need to avoid gluten in their cosmetics, including makeup, lotion, and hair products, has been the subject of debate. During my gluten-free life, I have heard two different schools of thought about this. The conservative one is that celiac disease is a digestive disorder and that to exacerbate the condition, one would have to consume gluten, so lipstick would need to be checked because you are literally consuming it when you wear it. Because this school of thought maintains that gluten cannot be absorbed through the skin, gluten-containing shampoo would be considered safe, as would any other cosmetic or beauty or hygiene product that is not being eaten. The Mayo Clinic’s website is one resource that supports this idea, in their answer to Can gluten be absorbed through the skin? (Their answer is no.)

The other school of thought is that gluten on the skin, or anywhere on the body, can aggravate celiac disease or gluten sensitivity, especially if someone has any associated skin conditions. At the American College of Gastroenterology’s 76th Annual Scientific meeting, doctors presented a case of a 28-year old woman who experienced worsening of her celiac symptoms, including gastrointestinal complications and a recurring skin rash after using a body lotion advertised as “natural.” When she stopped using the lotion, her symptoms resolved. This was just one case, but how common is it to react to gluten in skin products? It’s hard to say, as most of the information is anecdotal, and few studies have been conducted, but I know from the people I have contact with in the gluten-free community that it is a problem for many.

The case of the 28-year old woman prompted researchers to explore how readily available information is about cosmetic ingredients. What they found, and what most of us already know, is that ingredients are difficult to obtain from cosmetic companies. Even if you can obtain all the ingredients, they are difficult to understand. Unlike the food industry, which requires labels to list the top 8 allergens in plain language so we can understand it, the cosmetics industry is not required to make ingredients understandable or list allergens.

I did find some information to help sort through the confusing labels and hopefully locate the gluten ingredients to watch out for.

CosmeticsInfo.org is a website that gives specific information about individual ingredients. In a search for “gluten”, “wheat” and “oat”, I was able to find the following ingredients and their definitions, including what type of cosmetics they are used in:

In addition, I found a commonly circulated list from L’Oreal of ingredients they state “contain wheat and other grains.” It’s not clear to me if all of these ingredients contain gluten (they may contain another grain like corn, for example).

Avena Sativa (Oat) Kernel Flour
Cyclodextrin
Dextrin
Dextrin Palmitate
Hydrolyzed Malt Extract
Hydrolyzed Oat Flour
Hydrolyzed Vegetable Protein
Hydrolyzed Wheat Flour
Hydrolyzed Wheat Gluten
Hydrolyzed Wheat Protein
Hydrolyzed Wheat Protein/PVP Crosspolymer
Hydrolyzed Wheat Starch
Malt Extract
Maltodextrin
Secale Cereale (Rye) Seed Flour
Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate
Triticum Vulgare (Wheat) Germ Extract
Triticum Vulgare (Wheat) Germ Oil
Triticum Vulgare (Wheat) Gluten
Triticum Vulgare (Wheat) Starch
Wheat Amino Acids
Wheat Germ Glycerides
Wheat Germamidopropalkonium Chloride
Wheat Protein
Wheatgermamidopropyl Ethyldimonium Ethosulfate
Yeast Extract

What about you? Are you careful about the ingredients in your cosmetics, shampoo, lotions? What brands have you found to be gluten-free?


I’ve accidentally eaten gluten … what can I do??

Posted on October 26th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, Symptoms | Read 15 Comments - Add Your Own »

It happens. You accidentally eat gluten, and you become sick. Is there anything you can do?

The following is an email I received from a concerned mother, whose daughter suffered recently from an accidental gluten ingestion:

sickMy daughter has just made a transatlantic flight during which the attendants gave her a meal designated specifically for her as gluten free (she had called ahead). She was vomiting for hours on the flight and on route home from the airport.

In the past she has experienced strong “brain fog”, depression, anxiety, fatigue, multiple canker sores, etc when she has gotten a little bit of gluten (she is a college student and her roommates and their guests have occasionally used her stuff or spilled beer, etc).

We know the appropriate treatment for celiac is a gluten free diet, but what can a person do to treat accidental gluten contamination? Are there foods, medications, or therapies that can help eliminate the toxin from the system and shorten the reaction time?

To answer this question I turned to Sheila Wagner, certified nutritionist specializing in food intolerance. She is also gluten-free and has suffered herself from the ill effects of gluten-by-accident. Here is what Sheila recommends for gluten exposure:

Despite being extra careful about eating gluten free, unfortunately, it’s always possible to encounter gluten in settings where we don’t prepare our own food, such as airplanes, restaurants or parties for example. Particularly for these times, I recommend having DPP-IV enzymes available to assist with lessening the gluten response. DPP stands for dipeptidyl peptidase and it is one of many enzymes that we make in our small intestine. Among its many functions is its ability to digest gluten and casein. Lab studies have shown a decrease in blood levels of gluten antibodies following ingestion of manufactured DPP-IV enzymes.

Compounds like metals, pesticides and certain antibiotics can interfere with DPP-IV function and may account for the differences in functional integrity of this enzyme from person to person. So as much I recommend gluten intolerant individuals carry these enzymes with them just in case they are needed, not everyone will get the same degree of benefit by taking them. There is no one protocol for taking the enzymes but I often suggest taking 1-2 capsules as soon as possible after ingesting gluten (or dairy) and then again later in the evening on an empty stomach in order to mop up any gluten that remains in the system. Some people continue to take 1-2 capsules on an empty stomach the next day and even two days following gluten ingestion to continue their attempts at diminishing the slow acting gluten antibody responses.

You can find DPP-IV enzyme containing products on health food store shelves.  Make sure to read the ingredient labels carefully that the product in fact contains DPP-IV. Both Kirkman Labs and Klaire Labs make products specifically for gluten and casein digestion that contain DPP-IV.

Does anyone else have strategies or product suggestions to help relieve accidental gluten ingestion.


My TV debut speaking about gluten and food allergies!

Posted on October 10th, 2011 by Alison | Posted in Celiac Disease, Food Allergies, Publicity, Sure Foods Living News | Read 14 Comments - Add Your Own »

I am so lucky — I got to talk about celiac disease and food allergies on TV! It makes me happy that over the past 9 years I have been able to share my story in so many ways — through my blog, in newspaper and magazine, in person, in groups and now on television. Cheryl Jennings of ABC 7 in San Francisco was as nice as can be, as was everyone I met at the studio. I also enjoyed meeting and listening to the others interviewed for this segment. I have already received some emails from those who saw it, so I know it has reached some people out there! :)

I hope you will watch the whole show, but if you are short on time, my interview starts at 18:18 (I’m the last 4 minutes of the show).


What’s for gluten-free breakfast?

Posted on July 21st, 2011 by Alison | Posted in Celiac Disease, Food Ideas, Gluten Intolerance, Products | ADD A COMMENT »

Did you know that breakfast cereal was invented only a little over 100 years ago? What was intended as a health food has become, for most Americans, a meal of sugary processed grains devoid of real nutrition. Bright unnatural colors, marshmallow or chocolate bits and prizes are Happy Breakfastwhat define our boxed cereals of today. Even choosing healthy, natural cereals can mean a lot of gluten, as most cereals are made from wheat, and if you are one of the 7% of Americans who have celiac disease or are gluten intolerant (some doctors suspect the number is closer to 30%!), this big dose of gluten at the beginning of the day can really affect the rest of your day.

So, what are your breakfast options if you need to be on a gluten-free diet? Don’t worry – there are many! Head over to Attune Foods, the makers of Erewhon cereal, to read my list of gluten-free breakfast ideas, and add your own in the comments!


The National Foundation for Celiac Awareness

Posted on May 31st, 2011 by Alison | Posted in Celiac Disease, NFCA | Read 1 Comment - Add Your Own »

nfcaIf you are not yet familiar with the National Foundation for Celiac Awareness (NFCA), it’s time to get acquainted! Founded by Alice Bast in 2003 after her own struggle with obtaining a diagnosis of celiac disease, the NFCA’s primary goal has been to raise awareness of celiac disease and gluten intolerance among the general public and the healthcare community.

The NFCA website has excellent resources, such as:

I am happy that I was chosen for NFCA’s “Blogger-A-Day The Gluten-Free Way” during the Celiac Awareness Month of May. I am the final blogger profiled, but you can read about all the other bloggers and see links to their favorite posts by going to the NFCA’s Celiac Central blog.

Thanks to the NFCA for raising awareness!


How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, Symptoms | Read 297 Comments - Add Your Own »

Wonder what happens when a girl with celiac disease eats gluten? Read on!

There was actually a time that I wanted to eat gluten just to see what would happen to me. I had been gluten-free for many years, and I didn’t know how my body would react. I also thought it would make for a good blog post! Well, here it is, but not intentionally. I have been “glutened” three times in the past year. I’m not talking about a tiny bit of cross-contamination — I accidentally ate gluten. And paid for it.

First there was the muffin incident, and although there was no obvious gluten, there is no doubt in my mind that there was a significant amount of it in that muffin.

One bite of glutenMonths later came a lunch out with colleagues to an Italian restaurant. One of my colleagues ordered the “gluten-free pasta” that turned out to be not gluten-free. Oops. I found out after I had eaten one bite of her pasta. Just one bite.

And the last time was a few weeks ago, when I ate gluten at lunch. The owner of the restaurant believed something to be gluten-free, but it turned out to be an appetizer made of semolina (which is wheat). This time I ate with my colleague and nutritionist Sheila Wagner, who is gluten-intolerant, so it was interesting to note the differences in our reactions.

In all three instances I reacted almost the same way:

  • Anywhere from one to four hours after ingesting the gluten, I began to feel nauseous and my stomach started hurting.
  • The nausea got gradually worse until I ended up vomiting and having diarrhea.
  • After that I was practically comatose. I could barely walk and had an uncontrollable need to lay down and either zone out (I caught myself staring out the window and I had no idea how long I had been doing it), or go to sleep as though I have been drinking alcohol and need to pass out for a while until I sober up.
  • I fluctuated between feeling hot and clammy to feeling chilled and shivering. This combined with achy muscles made me feel as though I had the flu.
  • After sleeping, I came to and felt sober again, although one of the times I remained spacy for hours after, and even a little bit the next day.

Sheila reacted in a totally different way when we ate the same meal:

  • She had a headache by the time we left the restaurant and began to feel bloating that she has not felt in a decade.
  • She awoke at 3:30 am that night with a “blaring” headache, stomach ache, a little nausea and an elevated heart rate (like she drank a bottle of booze).
  • She couldn’t go back to sleep and the headache got much worse. Her brain felt very slow, her bowels were also slow, and she had a low back ache and left neck pain.
  • She also had phlegm in her throat and sinuses.
  • She continued to have soft tissue and joint pain the entire next day and her headache persisted for about 24 hours.

All this from gluten!

In a way I feel lucky that my body gets rid of the gluten right away, so my symptoms don’t persist into the next day like Sheila’s did. I have heard from some of you who feel it for days, even weeks. If you’ve been gluten-free for a while, it would be interesting to hear what happens to you if you accidentally (or on purpose!) eat gluten.

How do you react to gluten?


What gluten-free means to me … a poem

Posted on May 12th, 2011 by Alison | Posted in Celiac Disease, Emotions | ADD A COMMENT »

May is National Celiac Awareness Month, and this month’s Attune Foods theme is “What does gluten-free mean to me?”

For four years I have written articles about celiac disease and gluten sensitivity on this blog. I have told my story and I have shared my emotions. And somehow I still have something to say!

Inspired by my 1st grader’s homework assignment, I thought I’d take a different approach by writing an acrostic poem (yeah, new word for me too!) about what being gluten-free means to me:

To me, Gluten-Free means…

Getting my life back after years of fatigue, anemia, stomach aches, asthma and more

To read the rest of the poem for the letters L, U, T, E, N, F, R, E, E, visit Attune Foods and tell me what being gluten-free means to you!