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 14 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?