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 2 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 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.


Ask the Doc: Can a little gluten affect my blood test?

Posted on August 14th, 2011 by Alison | Posted in Ask the Doc, Gluten Intolerance | ADD A COMMENT »

questionmarkgreen1.jpg Q. Can one or two recent “glutenings” create a positive TTG test even if I’ve been really compliant for 4 years?

A. It depends on how intense were your “glutenings”! A few crumbs here and there, or a huge serving of pasta, with several slices of bread, or a piece of cake, can make the difference between a positive anti-tTG and a negative test. The truth is no one really knows for sure. In certain research protocols, 7 grams of gluten are used in challenges to bring a normal intestinal biopsy in a proven celiac patient who has been gluten-free to an abnormal one, but I am unaware of any data about tTG levels. Besides, each individual may respond differently to the same amount of gluten; if your test has turned positive after only a little gluten intake, then you know that you are more sensitive and vulnerable.

Health and happiness,
Dr. Aron

Have a question for the doc?


It’s not all in your head. It could be gluten.

Posted on August 3rd, 2011 by Alison | Posted in Emotions, Gluten Intolerance, Symptoms | Read 12 Comments - Add Your Own »

“It’s all in your head” is the response more than one patient has received from a doctor after hearing about the patient’s health problems. I have heard this story from people who write to me looking for answers, and the fact that a doctor could be so dismissive of one’s health braincomplaints is frustrating and upsetting. Those that write me an email like the one I am sharing below have already taken the steps to find out what is wrong, and have discovered that by cutting out gluten, many if not all of their symptoms have resolved. I wonder how many others end up believing that it is in their heads, that there is no cure for their ailments, no hope to feel better. Gluten can indeed affect the head — with anxiety, depression, migraines, seizures, ADD and OCD, and even schizophrenia, but I doubt that’s what those doctors meant.

Here is an email I received recently:

“I’m sure you’re extremely busy, so I understand if you cannot respond to this email immediately, but I am desperate and would love your advice. I’m 27 years old.  I endured some abuse about a year into my marriage. I’ve been divorced about a year and a half, so my life is in a calm, peaceful place now. My body, on the other hand, has been rebelling. 

I was suffering night sweats, joint pain, belly bloat, terrible gas, and recurrent mouth sores that absolutely cover my mouth making it impossible to eat. I went on a gluten free diet about 8 months ago, and I found relief from almost all of those symptoms. If I go back on wheat, the symptoms return. My doctor tested me for celiac disease and the results came back negative. I had been on a gluten-free diet for quite some time I thought it was possible that could’ve affected the outcome of the blood test, but my doctor refuses to look into the matter any further. She blames my problems on anxiety and post-traumatic stress. I agree that stress is a factor, but is it possible stress sparked the digestive issues? I’ve had problems with IBS, specifically constipation, since the day I was born, and have also been lactose intolerant all my life. So digestive complications are nothing new. 

She acts like it’s all in my mind, which makes me feel so defeated. I don’t know where to go from here, but as someone with so much knowledge on the subject, I would value your advice more that I can tell you.”

In my answer to her, I told her that it is not in her mind, but rather her stomach! I also told her that her doctor sounds dismissive and ignorant and that she on the the other hand, sounds like she knows exactly what is going on. If she feels better off the gluten, that is her proof.

Celiac disease and gluten intolerance can indeed be triggered by stress, although it sounds like she already had symptoms long before. The stress could have turned it up a notch, or due to her radical lifestyle change she may have altered her diet to have more gluten in it, thereby making her symptoms worse.

“Where do I go from here?” she asked at the end of the email. Where do you go from here? You stay gluten-free if you feel better, you tell people you have a gluten intolerance or sensitivity or gluten allergy or whatever you want to call it, and you say it with confidence! It really doesn’t matter what anyone else thinks about it — do what is right for you.

I wish this reader well, and I hope that her email touches someone else out there struggling with the same obstacles. If anyone else has advice for those that are wondering if it’s all in their heads, please add your comments!


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 Body and Its Wisdom – Don’t Accept What’s “Normal”

Posted on June 9th, 2011 by Alison | Posted in Asthma, Emotions, Gluten Intolerance, Healthy Living | ADD A COMMENT »

Our own physical body possesses a wisdom which we who inhabit the body lack.  We give it orders which make no sense. ~Henry Miller

attunefoodsbrandam_buttonWhen did we become a society of people who think it’s normal to have discomfort and pain? We take medications for everything, without questioning whether we are really solving the problem or simply masking the symptoms. It seems like the more that people are affected by daily health issues, the less likely we are as a society to figure out what’s really wrong.

For most of my 20s, I suffered from stomach problems. One night in Boston, after I enjoyed some clam chowder, I wound up in a stall of the restaurant’s bathroom clutching my stomach. My friend suggested that I was lactose intolerant. I had not heard that term before. I wasn’t a picky eater – in fact, I enjoyed just about any kind of food, and I had never done any dieting of any kind. This was the first time I considered that there might be something I could not eat. Lactose intolerance made sense because it was fairly common as I was to learn. After all, they sold Lactaid (lactose-free mik) in the stores. My friend was wrong about the lactose intolerance diagnosis, but I believed it for 10 years. My body continued to tell me that something was wrong, but I didn’t listen – lactose intolerance seemed normal so I stuck with that idea, avoiding a lot of dairy and taking Lactaid pills.

To read more about not accepting what’s considered normal, go to my post at Attune Foods.


How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, Symptoms | Read 301 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?


Probiotics and Gluten Intolerance/Celiac Disease

Posted on April 14th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, Healthy Living, News & Research | Read 2 Comments - Add Your Own »

Bacteria – your gut is full of it! But wait, before you call the doctor for antibiotics, you need to know that not all bacteria are bad. In fact, the “friendly” bacteria that reside in your gut are vital to maintaining a healthy digestive system, and amazingly and perhaps most importantly, a healthy immune system.

lactobacillus1Unfortunately, the intestinal flora in many people’s digestive tracts are out of balance, with not enough of the good bacteria. Why the decrease in beneficial gut bacteria? It seems the way we live in our modern society is contributing to the imbalance. Consider some of the following theories as to why:

  1. The use of antibiotics has killed off the good bacteria in addition to the bad.
  2. The sterilization of our society – hand sanitizers and antibacterial cleansers – has eliminated the good bacteria along with the bad.
  3. The decreased consumption of cultured and fermented foods like kefir and sauerkraut, means we are not consuming as many probiotics in our diets as we used to.
  4. The increased consumption of whole or processed grains that have not been soaked, sprouted or fermented first has eliminated a source of prebiotics, which feed the good bacteria.
  5. Processing and pasteurization of foods destroys any beneficial bacteria that may naturally occur in the foods.
  6. C-sections and formula feeding changes the microflora of infants, possibly contributing to food intolerance and allergies.

Given the pace of our society today, it is unlikely that any of the above behaviors will change, so people are going to continue to have this bacterial imbalance.

If you have gluten intolerance or celiac disease like me, your gut flora may especially be out of whack. WANT TO READ THE REST? Go over to Attune Foods, where you will read some research on probiotics and celiac disease, and also get some advice on probiotics from Certified Nutritionist Sheila Wagner. Go to rest of article on probiotics… and please leave a comment over there!


Finally, gluten sensitivity is considered real

Posted on March 20th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, News & Research | Read 7 Comments - Add Your Own »

For years I have been talking about gluten sensitivity, encouraging people to Think Outside the Celiac Box. I have witnessed my own family members test negative for celiac disease but clearly have a sensitivity to gluten. All research up to the present has focused solely on celiac disease, an autoimmune condition in which the body mistakenly attacks its own tissue, specifically targeting the villi of the small intestine, making it difficult to absorb nutrients. I tested positive for this disease, but many others have struggled to find the validation that they too are suffering from the effects of gluten.

Finally, a new study highlighted in the Wall Street Journal acknowledges the condition of gluten sensitivity! Researchers found that there was indeed some immune response happening in a group of people that was different from those with celiac disease, but also different from the control group. They still aren’t sure how a reaction to gluten can cause so many varied symptoms in people — headaches, fatigue, neurological problems, IBS symptoms, ADHD — and the list goes on, but Dr. Alessio Fasano speculates that “once immune cells are mistakenly primed to attack gluten, they can migrate and spread inflammation, even to the brain.”

The article states that 6% of the population may be gluten sensitive. I believe the number is higher, and that this will be discovered as more studies are conducted on gluten sensitivity. But the recognition of the existence of gluten sensitivity is a great first step, so rejoice you gluten-sensitive people! You are not crazy, as doctors and family members and maybe even you believed!

Other articles that address gluten sensitivity: