Sure Foods Living – gluten-free and allergen-free living

Tuesday, May 25, 2010

9:15 am: I drive to muffin bakery to buy gluten-free muffin a few people told me they saw there.

9:20 am: I enter bakery and ask for gluten-free muffin. There are none in the case that is full of regular muffins. Guy behind counter goes to check in back. I see him ask someone something and then take a blueberry muffin off of a rack. He hands it to me. I ask, “You’re sure this is gluten-free?” He replies, “Oh yeah, we have a totally separate gluten-free mix.” I hesitate, thinking I should ask about cross-contamination, but don’t. (Mistake.)

9:25 am: I eat muffin while driving to San Francisco. It’s not very good. I don’t eat it all.

10:00 am: I begin consulting session at Whole Foods in San Francisco (a child has just been diagnosed with gluten, dairy and egg allergy and the family needs help.)

11:30 am: I am burping and starting to feel a little weak. I pretend to the client that I am fine.

11:40 am: I am nauseous. I open a bag of Rice Thins and eat a little bit of one. It doesn’t help. Now I tell the client that I am not feeling well and explain that I think I ate some gluten. (She didn’t know the  lesson would include seeing first-hand what can happen if one eats gluten!)

11:55 pm: I am walking as fast as I can to the Whole Foods bathroom. I get there. I vomit several times. I feel a little better. I have other gastrointestinal things going on too.

12:05 pm: I emerge from bathroom looking like hell I’m sure. I find client, apologize and pretend that I am now fine. We finish consulting session (thank god it was time to be over anyway) even though it is difficult for me to even talk as I am still nauseous.

12:20 pm: I am driving through Pacific Heights in San Francisco — huge mansions all around. I spin the car into a parking space, throw open the door and vomit into the street. Lovely.

12:30 pm: I am driving over the Golden Gate Bridge to go home, hoping I can make it across without throwing up — there is nowhere to pull over on the bridge. Deep breaths, air-conditioning on full blast, thinking happy, do-not-puke thoughts.

12:50 pm: I don’t make it home in time. Close, but I have to make an illegal turn to whip my car into a bank parking lot where I can vomit in the bushes.

1:00 pm: I am home. I have major gastrointestinal distress. I am weak. My arm and leg muscles are cramping. I crawl into bed.

2:15 pm: I want to stay in bed, but I have to pick up my girls from school. I can barely make it down my stairs, sliding down on my bottom. My body feels like jelly and is a little tingly. I sit on the stairs. I lay on the stairs. I force myself to the bathroom. More gastrointestinal stress. I am a little better.

2:50 pm: I go back into the bakery that sold me the muffin. I ask, “Is it possible that you gave me the wrong muffin this morning?” and I tell the guy what happened. Wide-eyed, he calls over someone in charge and he reassures me that it was a gluten-free muffin. I ask about cross-contamination (as I should have done in the beginning), and he tells me that they use the same trays as the regular muffins. “We can’t prevent cross-contamination,” he tell me. “No,” I think, “You won’t.” But I don’t have the energy to engage in that conversation right now.

3:00 pm: It’s over. I am weak, but no more nausea or other symptoms.

4:00 pm: I am able to eat. My energy is picking up. I am feeling almost normal but for the waves of weakness in my legs that continue throughout the evening.

I continue to to be amazed at the violent reaction I had, the worst I have ever had since being gluten-free over 7 years. How much gluten did I consume — a few crumbs leftover in the tray from another batch of muffins? I will never know.

Chalk this one up to Weird Food Reactions that your doctor doesn’t know about…

I went out the other night with some girlfriends and as we were deciding what to order, one of them complained to me that everything she has been eating for three days tastes bitter and leaves a metallic aftertaste. Worried that this was a sign of a health problem, she had emailed her doctor who recommended she check with her dentist first. The doctor also suggested that perhaps the bitter taste was a result of her body detoxing because she had started a gluten, dairy and sugar-free diet. (huh? makes no sense to me.)

This is where I come in:
“Did you eat pine nuts?” I asked her.
“Yes… why??”
“It’s the pine nuts.”
“What? The pine nuts? Yes, well, I did have a lot of pine nuts a couple of days ago. It’s the pine nuts?”
“Yep.”
“HOW do you know that?”
“Because it happened to me.”

About two years ago I experienced the same thing. I suddenly had a bitter taste in my mouth whenever I ate something. Didn’t matter what it was — something sweet or sour, fruit, vegetables, wine or chips. Every single thing I ate tasted bitter. After it went on for a few days, I feared that this was some permanent condition and I would never enjoy eating food again! I finally turned to Google and found a forum of people discussing the bitter taste and they all realized that they had eaten pine nuts in the days prior to the bitter taste starting. I was surprised to find the cause, as were all the people in the online forum — and I was relieved! It lasted a week, and was really annoying, but at least I knew it would go away. And I didn’t pay to see any specialists!

I’m not sure if I have eaten any pine nuts since then. We don’t have any nuts in our house due to my daughter’s nut allergy, and I don’t remember if I have eaten them out at a restaurant. I had sort of forgotten about this until hearing my friend’s story, and wondered how common this really is. Back to Google again to find out more…

It turns out that quite a few people have written about “Pine Mouth,” as they began calling it, since my first query years ago. A search of the medical journals turned up a 2010 article in the Journal of Medical Toxicology that concluded: “‘Pine mouth’ appears to be an emerging problem.”

The symptoms generally come on 2 days after ingesting the pine nuts, and can last up to 2 weeks! Though there has been no formal connection made, it seems that the people who were affected by pine mouth ate pine nuts that were imported from China. The China Tree Nut Association even held a national pine nut conference on November 24th, 2009, to try to find out where the bitter taste comes from!

Trader Joe’s and Costco brands were mentioned often in the forums that I read. No conclusion has been made as to WHY this happens and whether some people are affected by it, while others aren’t.

So, if you’re pining for pine nuts, be aware that you might just be left with a bitter taste in your mouth!

The osteoporosis drug Fosomax which is supposed to strengthen bones may in fact cause spontaneous fractures, with many women’s femurs actually snapping, according to a report on ABC news. One doctor explains the problem: “When [women] are on it for five, six, seven or eight years, they lost their ability to remodel and regenerate their skeleton,”… and so the women “are very vulnerable and they will then develop problems of brittle bone.” The drug has also been linked to osteonecrosis of the jaw, a bone disease known as “Dead Jaw.”

I found this report so disturbing! And then I read the comments below the article on the ABC News website… all these people talking about their broken femurs! I can’t believe this drug is on the market.

Another thought I have is: how many of the people being prescribed medication have been tested for celiac disease? In my opinion, this is another example of doctors treating a symptom with medication without looking for the cause. People with celiac disease are at a greater risk for developing osteoporosis or osteopenia — in fact, it is a very common symptom. If you have osteoporosis or osteopenia, please go get tested for celiac disease! Even women without any known bone issues have been prescribed the drug. If you are taking Fosomax (alendronate sodium), please check with your doctor about the risks that may be associated with this drug!

To read the original article, go to ABC News. Don’t forget to read the comments.

“Winning Without Wheat: How a gluten-free diet powers one of the best cycling teams in the world — and how it can help you perform better and recover faster.”

This is the title of this month’s Men’s Journal Magazine report on a professional cycling team that was advised by their team doctor to cut out the gluten during the racing season. The results? Improved performance all around.

A couple of quotes from team members, as reported in the article:
“I just had all-around better digestion, and digestion is the biggest thing in utilizing the energy I consume.”
“My performance really improved a lot — there was definitely a correlation.”

Would being gluten-free help every athlete’s physical performance? It depends on who you ask. There are mainstream celiac-focused doctors who say that there is no evidence to suggest that a gluten-free diet helps those who do not suffer from celiac disease. However, there are other doctors and diet specialists who are now realizing the far-reaching effects of gluten, not just on those with biopsy-proven celiac disease. Gluten intolerance or gluten sensitivity may affect much more of the population than anyone currently knows, or that any studies currently show. And there is still another thought that wheat is simply difficult to digest for any human being. So, bad tummy = poor performance.

My own athletic performance was certainly affected in the years before I was diagnosed with celiac disease. An avid runner, volleyball player and skiier, I experienced physical challenges. Exercise-induced asthma, aching knees and leg cramps forced me to stop in the middle of my runs. Temporary blindness like whiteouts halted me at the top of ski runs, and again those painful leg cramps inside my ski boots practically made my cry. Playing volleyball with digestive problems certainly didn’t help me soar to new heights! Since being gluten-free, I am a better athlete physically. No more asthma, leg cramps, joint pain or bad stomach to hold me back. (So what’s my excuse going to be now??)

The question that really remains is: how many people out there are sensitive or intolerant to gluten? If the number is high (as I believe it to be), then it makes sense that many athletes would experience benefits from a gluten-free diet.

Q. Could symptoms labeled as Burning Mouth Syndrome be caused by gluten intolerance?  These symptoms have been constant for 5 2/3 years and include pain in roof of mouth, tongue, cheeks and under the tongue at all times except when eating. Additionally during the night I have pain above the roof of the mouth and into one ear and down the throat.

I have had nightly GERD for 8 years that doesn’t respond to any medications,  thyroiditis and nodules and increased vascularity in the thyroid, sometimes a fine tremor in my hands, and involuntary movement of my tongue and extremities. I also have had post nasal drip and phlegm for 25+ years which doesn’t respond to any medication nor was it improved by surgery to correct a deviated septum (which my doctor said left me with “perfect sinuses”.)

I know the thyroid symptoms may improve if gluten-free but are any of the other symptoms likely to be improved?

A. Sores or aphthous ulcers and taste disorders are common in celiac disease, as is reflux esophagitis, and thyroiditis.  You must get tested for celiac disease, and you must have a thorough investigation into your reflux, with endoscopy biopsy and manometry studies.You may contact my office at www.gut-check.com.

Health and happiness,
Dr. Aron

Have a question for the doc?

At the beginning of this year, I wrote about a small study that connected Restless Legs Syndrome with Celiac Disease. A new larger study, that will be published in the medical journal Digestive Diseases and Sciences, confirms that screening for celiac disease and implementing a gluten-free diet can help many people suffering from Restless Legs Syndrome.

Here is the study in brief:

PURPOSE: Celiac disease may be associated with restless legs syndrome (RLS) because of an association with iron deficiency. Often, RLS negatively affects quality of life but may remain undiagnosed. This study evaluated the association between celiac disease and RLS.

RESULTS: The incidence of RLS among 85 patients with celiac disease was 35%, with a prevalence of 25% compared with 10% of spouses (P < 0.02). In 79% of patients with RLS and celiac disease, neuromuscular symptoms began during or after onset of gastrointestinal symptoms. Iron deficiency was present in 40% of celiac patients with active RLS compared with 6% of patients without RLS (P < 0.001). After 6 months of a gluten-free diet, RLS symptoms improved in 50% of 28 patients.

CONCLUSION: Screening for celiac disease in patients with RLS is important since this commonly overlooked silent disease may be a correctable factor for some patients with idiopathic RLS.

Original painting by Tara Himler

I want to share a correspondence I recently had with a woman named Chanel in Atlanta, Georgia. It really touched me and also brought to my attention a problem that doesn’t get talked about — in fact, it is practically ignored in the celiac community. Chanel has given me permission to use both her story and name because she hopes that others will relate to her story.

Here is the first email I received:

May 7, 2009
“I have read your story and the info on your site. I just want to say, thank you so much for sharing your story and all the helpful information you have made available to the public. My symptoms sound exactly like yours, right down to the vitiligo. I am 26 now and I began having horrible stomach pain when I turned 21. The pain literally started on my birthday. I had symptoms which my doctor diagnosed as IBS aggravated by stress (this was not good news considering I had a very high stress job at the time). He told me there was nothing he could do for me. He said all I could do is try to get my stress level under control, eat more fiber and hope for the best. It was like my concerns were just brushed aside and forgotten. Like my pain didn’t matter to anyone but me. It seemed so unfair.

That summer I took up meditation in an attempt to get my obsessive compulsive behavior and stress under control. So I sat in the sunshine practicing my deep breathing techniques. This helped a little with the stress… until I started getting spots! As my shoulders began to tan I realized there were spots of my skin that wouldn’t. This fact was not conducive to my stress levels. I lost a lot of weight because the pain was so bad I just couldn’t eat! People thought I had an eating disorder because I was already thin to begin with. Finally the pain and stress was so bad that I had to quit my job.

I tried diets, I tried cutting out dairy, I tried exercise programs (which wouldn’t work because the pain would prevent me from exercising), I tried going back to doctors, I tried food combining, dietitians and books and supplements and everything under the sun!! Nothing worked!! Finally I saw the book, G-Free diet and found your review. I then went to your site and read pretty much everything there. I will be scheduling an appointment to be tested for gluten allergy and Celiac Disease. I have already started the “G-free diet” and have been G-free for about 3 days. I hope this is the answer because I can already tell a difference. I don’t know how long it took for you, but my pain level has already decreased. After 5 years of pain, discomfort, stress and tears, I finally have some hope… Thank You, Thank You, Thank You….”

What a wonderful feeling to get an email like that! After I wiped tears from my eyes, I realized that I should let her know that if she is going to get tested for celiac disease she should NOT be on a gluten-free diet before getting tested because it can produce a false negative result. I asked her if she had insurance and suggested that she get the test for celiac disease right away before she continues with the gluten-free diet. Her reply:

May 8, 2009
“No I do not have insurance. Unfortunately when I left my job for one less stressful, I also left my benefits behind. I am also about to go back to school. I start May 19, so you can imagine how difficult the idea is for me to start eating gluten again. If that is what is causing my problems, I definitely do not want to cause pain that could pull me out of class. For the time being, I plan on staying gluten-free until I can afford to go back to the doctor. I wish I could go tomorrow just to have a definitive answer but for now, I am on the 4th day of being gluten free and so far the pain has decreased every day. I couldn’t believe how good I felt this morning! My boyfriend says it is just good to see me smile again. Thanks!”

When I emailed her a week later to see how she was feeling she replied:

May 17
“I am still G-free and I am still smiling!”

I know how she feels. I know EXACTLY how she feels. When I first read about celiac disease, I knew I had found the answer and went gluten-free that very minute. I called my doctor’s office and told them that I wanted to be tested. The doctor called me back to tell me not to stop eating gluten yet. At that point I had already been gluten-free for a few days, and like Chanel, already felt better, and knew that I never wanted to eat gluten again. I was lucky that a) I had medical insurance, and b) I was able to see my doctor right away and get the tests, because if those two things hadn’t happened, I’m not sure I would have ever tested positive for celiac disease. I was not about to eat gluten again — it simply hurt too much.

I always tell people they should get the celiac blood test, but clearly there are cases where this is difficult for the person financially. My cousin ended up paying $500 out of pocket for the celiac panel for her daughter (which turned out to be negative despite her many health problems). I have received many emails from people without insurance asking for help because they are sick and want to try the diet.

There aren’t many options that I know of for people who can’t afford the testing. The Celiac Disease Foundation didn’t have any suggestions for me on the phone when I inquired about testing options for people without insurance. The National Foundation for Celiac Awareness suggested that there are sometimes free screenings like at the University of Chicago Celiac Disease Center. This is a good option, if one can get to Chicago on that particular day of the year. They also suggested contacting the closest celiac support group to see if they know of any opportunities offered through local health care providers. This is a good idea if such programs exist, if they are convenient, if the person would have any way of knowing about them and if they are running at the time the person is seeking testing.

Unfortunately, without that celiac test, many people are not given credibility for choosing to be on a gluten-free diet, even if it is for health reasons. People like Chanel are not doing it to follow a fad, or to lose weight (many are actually trying to gain weight). They are doing it because they are sick, and they are sick of being sick.

And yet, although they are dedicated to the diet,  they feel left out of support groups, conferences, etc. because they were never diagnosed with celiac disease. (I have received many emails telling me this.)

So, please — doctors, relatives, friends, colleagues — don’t hold it against Chanel and others like her that they are not officially “celiac.” Understand that the world of celiac testing is not perfect and not available to everyone. Believe them when they say they feel better being gluten-free. Welcome them into your support groups, include them in your research and your causes, and most importantly, share with them your gluten-free love!

Thank you, Chanel, for your story. I hope you continue to feel better!

Q. I noticed your answer to a question about celiac disease that its onset could be caused by abdominal surgery. How is this possible? How often does it happen? I have just recently started seeing a homeopathic MD and one of the tests showed a borderline gluten allergy and thyroid imbalance. All of my symptoms have worsened through 2 pregnancies that resulted in post partum induced thyroidism and an ectopic that ruptured requiring surgery. Your comment about surgery causing celiac disease is interesting. Thank you for any info you can share.

A. Many with latent celiac disease will have activation of the disease after any abdominal surgical procedure; the mechanism is obscure, but is thought to be a result of an intense inflammatory response to the operation.  Non-celiac mimicking conditions such as the Irritable Bowel Syndrome are similarly activated.

Health and happiness,
Dr. Aron

Have a question for the doc?

Q. I have had polycystic ovarian syndrome (PCOS) for several years and luckily, though various fertility treatments, was able to conceive and give birth to two beautiful boys (ages 5 and 2).  Since my youngest was born via C-section, I had been having abdominal pain, cramping, intermittent diarrhea, etc.  I had never had gastro problems before this.  Last month, I had a laparoscopy that found endometriosis/adenomiosis/ovarian cysts, all of which were cauterized. I continued to be extremely fatigued, losing weight, diarrhea, etc., so on a whim I had a blood test for celiac that was suggested months earlier by my gastro.  Of course, it was positive.  I am just coming to grips with all this right now.  I am unable to work because I am in the bathroom half the day, on my heating pad for the continued back pain from the laparoscopy, and always exhausted.  My family is going on the gluten-free diet to see if that helps me feel better and I am going to have my allergist check me for other food allergies and for a Candida albicans yeast allergy (the allergist found earlier last year that I had virtually no immunity to any strep infection strains and after a pneumonia vaccine shot, the numbers improved – I had been having 8-10 sinus infections a year, flu/bronchitis twice in the past 3 years, and various other weird infections requiring multiple rounds of antibiotics).

My question is – are all of these (PCOS, endometriosis, celiac) related? Are there good resources on these diseases if they are or people who actually have all 3? I feel like every few months I find out something new about myself, so I feel like I flit from problem to problem instead of addressing a larger cause.

A. Endometriosis is a completely independent condition, but PCOS and celiac are related.  Treatment of the endometriosis should be explored with your gynecologist.  The gluten-free diet should help with the other problems, but remember that celiac disease is an inherited condition, so you’ve had this all your life, only to be unmasked by the C-sections.  Thus, it will be several months before you’ll see a major benefit of the diet.

Q. Can endometriosis be made worse by celiac disease?

A. There is no doubt that untreated celiac disease can lead to an excessive sensitization of the enteric nerves, and thus augment any pain that might arise from endometriosis. Endometrial implants on the outer surface of the gut are surrounded by connective tissue-as a way of encasing these abnormal tissues. That process can also involve the intestinal muscles and nerves, and, when activated by the immune cells in the celiac patient, the painful sensation is enhanced. I see this also in IBS and IBD and coexisting endometriosis. When I control the inflammation with gut anti-inflammatory drugs, the pain improves. Other than that, these are two independent phenomena that often interact, and one should not consider celiac disease as a cause or effect of endometriosis.

Health and happiness,
Dr. Aron

Have a question for the doc?

I wrote an article a while ago about the connection between gluten and sleep disturbance, including restless leg syndrome. A new study published this month in the medical journal Sleep Medicine confirms the connection between restless leg syndrome and celiac disease.

What is restless leg syndrome?

Here is an explanation from the RLS Foundation:

“Restless legs syndrome (RLS) is a neurological condition that is characterized by the irresistible urge to move the legs. While the name may sound funny, it is a very real disorder. In order for you to be officially diagnosed with RLS, you must meet the criteria described in the four bullets below:

• You have a strong urge to move your legs which you may not be able to resist. The need to move is often accompanied by uncomfortable sensations. Some words used to describe these sensations include: creeping, itching, pulling, creepy-crawly, tugging, or gnawing.
• Your RLS symptoms start or become worse when you are resting. The longer you are resting, the greater the chance the symptoms will occur and the more severe they are likely to be.
• Your RLS symptoms get better when you move your legs. The relief can be complete or only partial but generally starts very soon after starting an activity. Relief persists as long as the motor activity continues.
• Your RLS symptoms are worse in the evening especially when you are lying down. Activities that bother you at night do not bother you during the day.

RLS can also cause difficulty in falling or staying asleep which can be one of the chief complaints of the syndrome. A substantial number of people who have RLS also have periodic limb movements of sleep (PLMS). These are jerks that occur every 20 to 30 seconds on and off throughout the night. This can cause partial awakenings that disrupt sleep. Sleep deprivation can seriously impact your work, relationships, and health.”

What is the connection between restless leg syndrome and celiac disease?

CONTINUE READING »