If you are new to gluten-free, read this…

Posted on September 19th, 2017 by Alison | Posted in Celiac Disease, Gluten Intolerance | Comments Off on If you are new to gluten-free, read this…

15 years ago, I was diagnosed with celiac disease. When I tell people that, their eyes get wide and they say something like, “Wow, you were ahead of the curve!” It’s true — I didn’t know anyone with celiac and foods weren’t yet labeled with allergens (the Food Allergen Labeling law passed in 2006). I spent countless hours reading labels and calling companies to find information in hopes of being able to eat a new product. If I took a chance, I risked becoming ill — within an hour I would be vomiting and have diarrhea, fever, chills and muscle cramping that would only go away with time (usually spent in bed, passed out, as if I had been drugged).

Fast forward to 2017. I figure that by now, if you haven’t heard of gluten, then you truly have your head in the sand. Everyone has heard of gluten-free — that is certain — but there are many people who have not considered that it could be the cause of their own health problems or the health issues of their children. Surprisingly, I have found that there is still a disconnect with doctors, who treat individual symptoms but don’t consider the serious effects of common food intolerance (like gluten) on the whole body. I don’t preach about the negative effects of gluten like I used to (I figure if people want to “hear” it, they will), but sometimes a friend or acquaintance, or someone who contacts me on this blog, reaches out because they need help. And I am so happy to help, because I have been there.

I know what it feels like to be sick — not your regular kind of sick, but a daily sick that just kind of hangs there on your body, causing fatigue, intestinal distress, all kinds of pain, mood swings and so many other symptoms that you don’t even realize are symptoms because you have been living with them for so long. I know what it feels like when you first realize that there may be a reason for it all and I know the hope that follows. I know what it feels like to be devastated when you realize how many foods you can’t eat for the rest of your life. I know what it feels like to be overwhelmed reading labels and trying to figure out what you can eat. I know the frustration of trying to explain your diet to others and the feeling of defensiveness when people don’t quite believe you. And I know the RELIEF and HAPPINESS you experience when you start to feel better and accept that eating the thing that makes you sick is just not worth being sick.

So, for those of you that are new to this, welcome! I hope that I, and others on this site who have been doing this for a while, can offer you support and answers.

(This post inspired by a friend who has been struggling and recently had a “light bulb” go on when learning about the symptoms of celiac/gluten intolerance. Good luck to you, my friend! ❤ )

 


Gluten-Related Disorders — A Visual

Posted on March 8th, 2016 by Alison | Posted in Celiac Disease, Wheat Allergy | Read 1 Comment - Add Your Own »

There has been an increase in adverse reactions to wheat and gluten. I find this chart to be a very helpful visual to explain the spectrum of wheat and gluten-related disorders in general, along with the corresponding definitions (which I have abbreviated) below. There are many, many symptoms of celiac disease and gluten intolerance that are not included here — for a more detailed list, go to the Symptoms page.
Wheat Gluten Chart

Coeliac (or Celiac) disease
Coeliac disease (CD) is an autoimmune condition, which affects the small intestine, resulting in malabsorption, weight loss, fatigue, abdominal pain, vomiting and diarrhoea. Consequently, patients with CD suffer from nutrient deficiencies including iron anaemia and folate deficiency. However, individuals may also be asymptomatic or present only mild symptoms.

Gluten Ataxia
Celiac disease may be associated with neurological conditions, with peripheral neuropathy and gluten ataxia (GA), in which the cerebellum is damaged, being the most common. Their prevalence has not been established but Hadjivassiliou et al. (2002) have estimated that neurological dysfunction may occur in about 6–10% of patients presenting with gastrointestinal symptoms.

Dermatitis Herpetiformis
Dermatitis herpetiformis (DH) is a form of Celiac Disease, which presents as a chronic skin disease.

Wheat allergy
Allergies are hypersensitive responses to foreign components, most commonly proteins, and are usually associated with the production of a specific class of antibody called IgE (in contrast to the IgG antibodies which are produced in response to most invading pathogens). Symptoms of allergy to ingested wheat products include atopic dermatitis, urticaria (also called hives or nettle rash), and respiratory and gastrointestinal symptoms.

Wheat‐dependent exercise‐induced anaphylaxis (WDEIA)
The best characterised form of wheat allergy is wheat‐dependent exercise‐induced anaphylaxis (WDEIA). This is a type of allergic response, which is triggered by the ingestion of food followed by physical exercise, with wheat and crustaceans being the commonest causes

Non-Coeliac Gluten Sensitivity
In recent years, an increasing number of patients have reported symptoms related to wheat consumption, which are not classical allergic or autoimmune responses. This has led to the definition of a new condition called ‘non‐coeliac gluten sensitivity’ (NCGS) (Sapone et al. 2012). The range of symptoms varies widely, including gastrointestinal symptoms, tiredness, headache, dermatitis, pains in muscles and joints, depression, anxiety and anemia, and it is not clear whether NCGS represents a single syndrome or a range of conditions (Sapone et al. 2012). It is therefore best defined in negative terms: as a reaction to gluten (or wheat) when both CD and allergy have been excluded (Aziz et al. 2012; Sapone et al. 2012).

Source: Nutr Bull. 2016 Mar; 41(1): 6–13.
Published online 2016 Feb 16. doi:  10.1111/nbu.12186

Increased rates of pregnancy complications in women with celiac disease

Posted on April 22nd, 2015 by Alison | Posted in Babies & Kids, Celiac Disease, Symptoms | Comments Off on Increased rates of pregnancy complications in women with celiac disease

Pregnancy Photo by Ben EarwickerI have always felt lucky that I began a gluten-free diet two years before I became pregnant with my children. Although it wasn’t easy for me to get pregnant, by the time I did, my body had healed significantly from the effects of gluten that could have led to serious complications like miscarriage, premature delivery, low birth weight or even stillbirth.

Important nutritional deficiencies (of zinc, selenium, iron and folate) associated with undiagnosed celiac disease may be partially to blame for complications in pregnancy. I was severely anemic before my celiac diagnosis and shudder to think how the lack of iron would have affected my baby.

A new study published in the Annals of Gastroenterology confirms prior research on how celiac disease affects pregnancy by concluding that compared with women in the general population, women with undiagnosed celiac disease have significant increases in spontaneous abortions (miscarriage), preterm delivery and delayed menarche (beginning of menstruation), resulting in fewer successful pregnancies.

Here are the points made by the researchers of this study:

  • Significantly fewer women with celiac disease who tried to become pregnant had successful delivery of one or more pregnancies, suggesting that women with celiac may have a significantly lower rate of fertility.
  • A significantly higher number of spontaneous abortions (miscarriages) occurred in women with celiac compared to controls, with 85% of them occurring before beginning a gluten-free diet.
  • Women with untreated celiac disease are at an increased risk of pregnancy complications.
  • Women with celiac disease have a higher prevalence of preterm deliveries (premature babies).
  • Undiagnosed celiac disease should be considered in patients with recurrent complications of pregnancy, and these women should be given blood tests to detect celiac disease.
  • (This is my point I am adding: even if negative for celiac disease, consider getting tested for gluten sensitivity or go on a gluten-free diet — gluten sensitivity can cause a myriad of health problems.)

As I mentioned above, these findings are not necessarily new — the study mentions much prior research conducted in this area. Alice Bast, the founder of the National Foundation for Celiac Awareness (NFCA) has been sharing this information for years. By the time she discovered she had celiac, she had suffered through the trauma of delivering a full-term stillbirth, multiple miscarriages and a baby born at only 3 pounds. You can read more about Alice’s story here and here.

I encourage you to read the full study I have summarized above: Increased rates of pregnancy complications in women with celiac disease and please pass it along to anyone you know who is having complications with fertility or pregnancy. Feel free to share your own stories here to help others.


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 | Comments Off on The Taylor Family Foundation – amazing what they do for special needs kids!

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.