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 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


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.


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!


How I react to gluten… what happens to you?

Posted on May 29th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, Symptoms | Read 306 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?


From GERD to Great: Abigail’s Story

Posted on March 7th, 2011 by Alison | Posted in Babies & Kids, Celiac Disease, GERD, Symptoms | Read 24 Comments - Add Your Own »

A baby diagnosed with GERD, a tired mother who kept fighting for answers, and a new beginning. Today’s post is from Cherie, a reader of this blog who originally shared her story with me via email. She willingly agreed to share her story publicly, knowing that her difficult journey could help others to avoid the pain that her daughter and her family went through. Thank you Cherie.

abigail-babyMy name is Cherie. In 2007 I gave birth to our second child, a beautiful baby girl. She came quickly and was just perfect. Little did I know that this would begin an often difficult and heart wrenching journey. It started right away. Because of a surgery I had when I was younger I was unable to breastfeed my babies. So the nurse gave me some formula for Abigail, but she would not eat it. I should have know something was up — our son, born less then 2 years earlier, ate his first bottle like nothing. But not Abigail. She just would not eat. She just wanted to sleep. We tried so many different things to get her to drink. Finally a nurse decide to try putting the formula in a little medicine cup and putting drops on her lips. Eventually, she started drinking, but we ended up staying in the hospital for 5 days.

When we got home, her feeding issues continued. She never wanted to eat. And when she did she would cry and scream. She would violently spit up. She would throw up. Off to the pediatrician we went. She was diagnosed with GERD. Then put on Zantac. It did not really help. She was still crying and screaming, when I could get her to eat. It was so difficult for me. I was a stay at home Mum, and had Connor who was not even 2 yet. My husband worked a lot and I felt so overwhelmed with this little one who would just scream for hours on end. Abigail needed to be constantly held. She never, I mean NEVER, slept. She would sleep for 20 minutes to half an hour at a time, even at night time. She never napped. When she did sleep she would reflux in her sleep and start gagging and often turned blue from everything settling in in her mouth and throat. I was scared to death to let her sleep in her room because I thought she would choke to death. We did all the typical things: raised her bed, tried to tuck her in so she would not slide down. Nothing really helped.

Finally, after going to the doctor for the millionth time, I took her to the ER. CONTINUE READING »


Asthma is linked to gluten, study finds (and so did I)

Posted on February 26th, 2011 by Alison | Posted in Asthma, Celiac Disease, Symptoms | Read 12 Comments - Add Your Own »

asthma-inhaler1People with celiac disease are more likely to develop asthma, according to a new study published in the Journal of Allergy and Clinical Immunology. And, those diagnosed with asthma are more likely to develop celiac disease. How are asthma and gluten linked? The researchers are not quite sure what makes people with celiac disease have a 1.6 fold increased risk of asthma (60% more likely to have asthma) than those without. However, one of the researching doctors in a Reuter’s Health article on the study, speculated that it is related to vitamin D deficiency.

Since people with celiac disease have damaged intestines, they are unable to properly absorb nutrients. According to the Vitamin D Council, Vitamin D helps “the immune and nervous systems defend the body, with defects in this intricate system leading to autoimmune disorders.” Several studies have shown that lower levels of vitamin D related to higher incidence of asthma in children. Just supplementing with vitamin D isn’t enough if the body can’t absorb it, as is the case with celiac disease. Removal of gluten is the only way to heal the intestines, so that they can begin to absorb vitamins again.

But forget those studies… just look at me. I puffed on asthma inhalers every day for about 25 years and took prednisone when the inhalers weren’t enough. Three months after I started a gluten-free diet after I was diagnosed with celiac disease at age 32, I stopped my medication cold turkey. I never used it again. It has been over 8 years.

I hadn’t considered vitamin D deficiency as a cause of my asthma before reading this new study. I recently had my vitamin D tested and it is low even now, so I can’t imagine what the level was before my diagnosis — I was never tested for vitamin deficiencies in the past.

If you have asthma, I urge you to get tested for vitamin deficiencies and for celiac disease. Think of your asthma as a symptom for which there is a cause. To be able to breathe again — now that is a gift.

You can read more about me and my asthma and if you’ve got a story about your asthma, please share it in the comments.


Skiing is more fun now that I don’t eat gluten

Posted on February 25th, 2011 by Alison | Posted in Celiac Disease, Gluten Intolerance, Symptoms | Read 2 Comments - Add Your Own »

skiingI went skiing this week for the first time since my diagnosis of celiac disease and the beginning of my gluten-free diet more than eight years ago. I used to be an avid skier, starting as a kid on family trips, then in my college days and after with friends. The last time I skied, though I enjoyed it, I was also suffering.

My feet and legs were cramping inside my ski boots, and if you’ve ever worn ski boots you know how stiff they are, so there was really nothing I could do about the cramps but grin and bear it (I cried, however). In addition to the cramping, I was having a difficult time seeing on the slopes. After skiing a bit, I would have to stop because my vision was obscured by white spots in front of my eyes. I would have to wait until I could see again before continuing down the mountain. Being in altitude, I had a hard time catching my breath as many people do, but the lack of air felt like it went deep, and it took a while to recover each time I stopped. All of these difficulties were caused by the anemia I suffered as a result of undiagnosed celiac disease.

That I stopped skiing for many years had nothing to do with these health problems — it’s just that I had kids, and time flew by. But this week I was back at it, and after so many years away from the sport that I loved, several things were clear:

  • I no longer suffer from foot and leg cramps while skiing!
  • I can see! No more white spots, no more loss of vision. More oxygen to my brain!
  • My recovery was much better — I could ski a hard run, and when I stopped I could catch my breath more easily and quickly.
  • Ski equipment is so much better! Except for ski boots, which are still uncomfortable (but not as bad without the cramps). :)

I am older, and not as bold, but I feel good. I see more skiing in my future!

If you suspect you might be suffering from anemia or celiac disease, ask your doctor to get tested. And remember, even if you test negative for celiac disease, you could still have a gluten problem.


Vitiligo and gluten intolerance

Posted on December 14th, 2010 by Alison | Posted in Celiac Disease, Gluten Intolerance, News & Research, Symptoms | Read 162 Comments - Add Your Own »

Vitiligo and celiac disease is a topic I have been meaning to write about for a while now. I have both, and believe there is a connection between vitiligo and gluten intolerance. I have found out more on this topic from the readers of this blog than any other source out there, and hope that this incredible information reaches those with vitiligo who are told there is no known cause.

Vitiligo is a skin disorder characterized by smooth, white patches on various parts of the body that occur due to loss of pigment. This loss of pigment often starts on the hands, feet and face, and then can progress to other parts of the body. Hair can turn white where there is a vitiligo patch. Vitiligo is not physically painful, but can be quite emotionally devastating as it affects one’s appearance.

The picture below is of me as a child with vitiligo on my face. It appeared symmetrically below my eyes, but asymmetrically on my legs — 8 spots on only one side of my body.

vitiligo1

The spots on my face re-pigmented with the treatment at that time (1973) which was psoralen pills and UV light treatments at Stanford. The spots on my legs remained into adulthood, never getting any bigger or smaller. When I was diagnosed with celiac disease in 2002, I didn’t think about the vitiligo, but over the past years since being on a gluten-free diet, CONTINUE READING »