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-free diet leads to remission of fibromyalgia in new study

Posted on April 18th, 2014 by Alison | Posted in Autoimmune Disease, Gluten Intolerance, Symptoms | Read 3 Comments - Add Your Own »

In 2008, I wrote a post theorizing the connection between fibromyalgia and gluten. At that time I could find no published medical evidence of this connection, but comments from readers (over 200 of them) confirmed my belief, that many people with a diagnosis of fibromyalgia (FM) may really have celiac disease (CD) or gluten-sensitivity and that a gluten-free diet would alleviate some, if not all, of the symptoms. In many cases, it may not be just gluten, but other food intolerance as well.

I am pleased to see a new study out of Spain that examined 20 patients with fibromyalgia who tested negative for celiac disease but that got better on a gluten-free diet. They concluded at the end of the 16 month study that

remarkable clinical improvement can be achieved with a gluten-free diet in patients with FM, even if CD has been ruled out, suggesting that non-celiac gluten sensitivity may be an underlying treatable cause of FM syndrome

They found in their study that

The level of widespread chronic pain improved dramatically for all patients; for 15 patients, chronic widespread pain was no longer present, indicating remission of FM.

Fifteen patients returned to work or normal life.

In three patients who had been previously treated in pain units with opioids, these drugs were discontinued. Fatigue, gastrointestinal symptoms, migraine, and depression also improved together with pain.

Two patients, both with oral aphthae, went into complete remission for psoriatic arthritis and undifferentiated spondyloarthritis.

For some patients, the clinical improvement after starting the gluten-free diet was striking and observed after only a few months; for other patients, improvement was very slow and was gradually observed over many months of follow-up.

For eight patients, the intake of gluten was followed by clinical worsening, which subsided after returning to a strict gluten-free diet.

You can download the entire published study here: Fibromyalgia and non‑celiac gluten sensitivity: a description with remission of fibromyalgia
fibromyalgia

If you or someone you know is suffering from fibromyalgia, consider celiac disease or gluten sensitivity as the cause of the symptoms. Trust me, a change in diet is a small price to pay for feeling better!


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?


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.