Category Archives: Celiac-Associated Conditions

forgetfulness

The day I forgot to be my own celiac advocate

**As of January 2017 I have stopped updating this webpage and all comments are now closed. Please visit my new page, www.jessicamaddenmd.com, for my new posts, updated celiac information, and the ability to comment on my old posts. Thank you to all of you for your support!**

My family and I moved back to Cleveland recently and I had my first appointment with my new primary care physician a few days ago. Since it was my first time seeing her we reviewed my past medical history, surgeries, allergies, family history, medications, etc.  prior to my exam. After examining me she sent my prescription refills to the pharmacy, and then printed out a requisition slip for me to take the lab to have my blood drawn for cholesterol levels, a basic metabolic panel, and complete blood count (all normal baseline labs for someone of my age–almost 40!!!) as well as thyroid function labs since I have hypothyroidism from Hashimoto’s disease.

I had a busy rest of my day and it wasn’t until I got home at night and reflected on my visit that I realized my doctor and I didn’t discuss my diagnosis of celiac disease (outside of when I stated it when I listed all of my medical conditions).

She never asked when I was diagnosed with celiac disease and what testing I had done.  She didn’t ask how I was doing on the gluten-free diet.  We did not discuss the need for monitoring for problems associated with celiac disease, such as vitamin D deficiency, anemia and bone loss, or checking celiac antibody levels.  We did not discuss the possibility of being followed in a dedicated celiac disease clinic or by a celiac expert.  It was almost as if my celiac disease wasn’t treated as a “real” disease since there wasn’t a medication to prescribe to treat it. And since it was not at the forefront of my mind that day I failed to bring it up.

I checked a few of the major celiac disease websites and according to the University of Chicago Celiac Disease Center as well as the Celiac Disease Center at Columbia University, follow-up testing should occur yearly for those of us who have been diagnosed > 12 months:

http://www.cureceliacdisease.org/wp-content/uploads/FactSheet6_Follow-Up-Testing.pdf and https://celiacdiseasecenter.columbia.edu/celiac-disease/follow-up.

I also looked up the recommendations on the medical database Up-to-Date, which is for health care providers, and came across this algorithm (for those of you who are visual learners like I am):

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* Tissue transglutaminase and deamidated gliadin peptide can be used for monitoring celiac disease.
Other tests may include complete blood count, alanine aminotransferase, vitamins (A, D, E, B12), copper, zinc, carotene, folic acid, ferritin, and iron.
Δ Blood tests at follow-up should be individualized to verify correction of laboratory tests that were abnormal at baseline.
The role of biopsy for monitoring celiac disease is discussed in detail in the text

So, at a bare minimum my doctor and I should have discussed and confirmed that I am not having difficulty adhering to the gluten-free diet, and I should have had my vitamin D level and celiac antibody level (TTG-IgA) checked.

I thought it would be worthwhile to share my experience, as I figured that since I forgot to discuss celiac disease with my own primary care doctor that this may have happened/or will happen to some of you as well. We need to continue to be our own celiac advocates.

Happy New Year to all of you! I hope to reply to your emails and messages soon.

P.S. I do want to report that the pharmacist who filled my prescriptions the next day was excellent and printed out detailed ingredient lists that we double-checked together to confirm that my medications were gluten-free. It sort of made up for my mediocre annual physical.

Image courtesy of  stock images at freedigitalphotos.com

Celiac Disease and Headaches

I’ve been intending to write about the association between celiac disease and headaches over the last month, but every time I’ve sat down in front of my computer to start to write this post, I’ve given myself a headache :)

Seriously, though, I have had a lot of readers ask about whether or not headaches can be a symptom of celiac disease. Although I’ve always answered “yes,” because headaches are always on the lists of celiac symptoms, I had not dived into any of the research about this subject until now.

One of the first studies regarding celiac disease and headaches was published by a group of researchers from Columbia University in 2013.  The study group included 188 subjects with celiac disease and 25 subjects with non-celiac gluten sensitivity (NCGS).  Chronic headaches were reported by 30% of those with celiac disease and 56% of those with NCGS, while only 14% of the control group (n=178) reported having chronic headaches. A significant proportion of celiac subjects with chronic headaches also met criteria for having migraines.  The authors speculate that widespread inflammation and/or celiac antibodies attacking the nervous system may cause headache symptoms.

There was a larger scale study examining the association between celiac disease and headaches that was published earlier this year.  28,648 Swedish subjects with celiac disease were compared to 143,126 controls. The risk of headaches in subjects with celiac disease was significantly higher than in the controls (4.7% v 2.9%).  Interestingly enough, the investigators also found that subjects with elevated celiac antibodies but normal small intestinal biopsies (aka “potential” celiac) as well as subjects with intestinal inflammation, but not villous atrophy (the classic abnormality on small bowel biopsy in celiac disease), were also at a higher risk of having headaches.

Although the first two studies involved only adult patients with celiac disease, there has been some research showing an association between celiac disease and headaches in the pediatric population as well. The first was a well-designed Italian study published in 2009. 354 children with celiac disease were compared to 200 healthy controls. Almost 25% of the children with celiac suffered from headaches prior to their celiac diagnoses compared with only 8% of those without celiac.  Over ¾ of the children with celiac disease and headaches reported an improvement in headaches after going onto the gluten-free diet.  In addition, 5% of the control children with chronic headaches were found to have undiagnosed celiac disease. In another recent study a large sample of children attending a clinic for pediatric headaches were screened for celiac disease.  The prevalence of celiac disease in the children with chronic headaches was found to be twice as high as the general population (2.04% v 1.2%).

Some hypotheses regarding the link between celiac disease and headaches include that celiac-induced inflammation may spread to the brain and nervous system, that TTG antibodies can attack the nervous system, that they may be the result of long-standing vitamin deficiencies (i.e. B12, D, E, folic acid, and pyridoxidine) and/or lower than normal levels of serotonin, or might be due to an alteration of the microbiome (bacterial imbalance in the body).

In conclusion, there has been some solid research over the last few years that those of us with celiac disease have a higher risk of headaches than the general population, that patients with chronic headaches should probably be screened for celiac disease, and that following the gluten free diet may help to alleviate headache symptoms.

Have any of you with celiac disease or gluten sensitivity suffered from recurrent headaches either before or after diagnosis? If so, please feel free to share your story, as it will likely help a future reader. Thank you!

Happy End of Celiac Awareness Month too!

 

References

Dimitrova, AK, Ungaro, RC, Lebwohl, B, Lewis SK, Tennyson, C, Green, M, Babyatsky, MW, and Green, P.  (2013), Prevalence of Migraine in Patients with Celiac Disease and Inflammatory Bowel Disease. Headache: The Journal of Head and Face Pain, 53: 344-355.

Lebwohl, B, Roy, A, Alaedini, A, Green, PH, Ludvigsson, JF. Risk of Headache-Related Healthcare Visits in Patients with Celiac Disease: A Population-Based Observational Study.  Headache, Epub ahead of print on Mar 12, 2016.

Lionetti, E, Francavilla, R, Maiuri, L, et al. (2009), Headache in Pediatric Patients with Celiac Disease and its Prevalence as a Diagnostic Clue.  Journal of Pediatric Gastroenterology and Nutrition, 49(2): 202-207.

Nenna, R, Petrarca, L, Verdecchia, P, at al. (2016), Celiac Disease in a Large Cohort of Children and Adolescents with Recurrent Headache: A Retrospective Study.  Dig Liver Dis, 48(5): 495-498.

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Celiac Knowledge is Power

When I started this page back in 2012, about two years after my celiac diagnosis, I followed several other celiac webpages/blogs and was an active participant in the online forums. Being able to interact with other people who were medically gluten-free, like me, and reading about their experiences helped me to feel so much less alone. With time, though, I have had to stop participating in celiac forums and leaving comments on others’ pages. Part of this is due to time constraints, but a lot of my lack of participation is due to people complaining and criticizing each other online. If we, as members of the celiac community, dedicated our efforts to educating and supporting each other as opposed to whining and feeling sorry for ourselves, I think we could do an amazing job of spreading celiac knowledge.

There are so many fascinating things about celiac disease that I did not learn until after my own diagnosis, such as the following:

Celiac disease can develop at any time during life. A person can test negative at age 55 but then have full-blown celiac disease at age 60. You can be diagnosed when you are 9 months old or 99 years old.

You can have undiagnosed celiac disease and be overweight or obese. People of any body shape can develop it. Most adults are not extremely thin at the time of diagnosis, contrary to popular belief.

Celiac disease can affect just about any part of the body, including the brain, reproductive system, bones, liver, joints, skin, and teeth. Many people with celiac disease do not have digestive symptoms, instead suffering from symptoms like arthritis, nerve inflammation (neuropathy), headaches, difficulty getting pregnant, and elevated liver enzymes. It can take years, and even decades, to get a firm diagnosis (I personally experienced this).

Once a person has been on the GF diet for > 2 weeks, celiac antibody blood testing is pretty much useless—patients need to be eating gluten on a regular basis in order for celiac antibodies to be detected in blood. The same goes for endoscopy and small bowel biopsy.

When a patient is diagnosed with celiac disease, all first degree family members (siblings, parents, and/or children) should also be screened, as they are at a much higher risk than the general population. Second degree relatives (aunts, uncles, cousins and grandparents) should also consider screening.

Many people with celiac disease continue to have symptoms even after months on the GF diet (called non-responsive celiac disease, NRCD).   The most common cause of continued symptoms is ongoing gluten exposure, which is often accidental cross-contamination. Many of the current celiac drugs in development are to help to prevent us from experiencing NRCD.

Over-the-counter gluten-digesting enzymes are not safe for those of us with celiac–they do not break down gluten into small enough pieces to not cause an autoimmune reaction.

Lastly, coffee does not cross-react with gluten.  If this was the case, based on how much coffee I consume I would be dead, or at least chronically ill with persistently elevated celiac antibodies :)

I could keep going, but I think you can get the idea…it’s possible that through sharing just a few of these facts that you might help someone realize that they need to be tested for celiac. How cool would that be?

Also, totally random stuff for those of you who are still reading:

-As I posted on my Facebook page, I have recently become a member for the New England Celiac Organization (NECO) and plan to attend some of their meetings in the greater Boston area from time to time. Please email me (thepatientceliac@gmail.com) if you are interested in attending one of the NECO meetings together.

-I recently learned that Melinda Dennis, a well-known celiac dietician and co-author of the book “Real Life with Celiac Disease,” will be holding celiac/GF wellness retreats this fall and winter in NH and CA. You can check out her website, www.deletethewheat.com, for more information. I am seriously considering registering for the one in Santa Barbara, especially if this winter is as awful as last winter.

-Lastly, I think I’ve only had one person tell me that celiac disease “sucks” over the last few weeks since I moved. I think this is a record since I was diagnosed :)

Thanks for reading!

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Celiac Disease and Depression

I have had depression on my mind as I approach the anniversary of my father’s death by suicide. Like my father, I have suffered from depression in the past and the severe postpartum depressive episode that I experienced after I gave birth to my oldest daughter was one of the scariest experiences of my life.

I intended to write a post about the link between celiac disease and depression shortly after I started this blog in 2012, but I never got around to it. I was, unfortunately, not able to find all of the research articles that I had pulled at the time in anticipation of writing about the topic, so tonight I re-reviewed the literature.

In 2007, Dr. Ludvigsson and his celiac research team from Sweden published data showing that celiac patients have an 80% increased risk of depression compared to controls. A few years later researchers from Penn State University (Smyth, et al, 2011) found that 37% of female celiac patients report depression.  Even more recently a group from the Netherlands published a study in 2013 in which 39% of subjects with celiac disease reported having a history of depressive symptoms. Interestingly enough, for the vast majority of these patients in the Netherlands, the first depressive episodes occurred prior to diagnosis with celiac disease and starting on the gluten-free diet.

There was also an interesting case report from Poland, published in late 2014, in which a middle aged woman with severe, treatment-resistant depression and anxiety had a marked improvement in psychiatric symptoms after being diagnosed with celiac disease and starting on the gluten-free diet.

Some of the hypotheses for the association between depression and celiac disease include the following:

  • nutritional deficiencies, such as Vitamin B6, B12, and/or folic acid deficiency
  • altered brain metabolism and/or alterations in neurotransmitter levels, such as tryptophan
  • psychosocial consequences of being gluten-free, i.e. opting out of social situations due to worries about eating, social isolation and loneliness, and fear of cross-contamination
  • coexisting autoimmune disorders that are known to be linked with depression, such as hypothyroidism

I did write a bit about the psychosocial consequences of celiac disease back in 2013 (see link).

I came across many helpful links on celiac disease and depression online, including an article called “Depression and Celiac Disease” on the National Foundation for Celiac Awareness’ website (www.celiaccentral.org), as well as a recently updated article by Nancy Lapid on the site www.celiacdisease.about.com.

In upcoming months I hope to write about research showing associations between gluten-related disorders and other neuropsychiatric conditions, including anxiety, ADHD, and schizophrenia.

As always, thank you for reading, commenting, asking questions, sharing your experiences, etc.

References:

1. Ludvigsson, JF, Reutfors, J, Osby, U, Ekbom, A, and Montgomery, SM. Coeliac disease and risk of mood disorders—a general population-based cohort study.J Affect Disord. 2007 Apr; 99: 117–126

2. van Hees NJ, Van der Does W, Giltay EJ. Coeliac disease, diet adherence and depressive symptoms.J Psychosom Res. 2013 Feb; 74(2):155-60.

3. Małgorzata Urban-Kowalczyk, Janusz Œmigielski, and Agnieszka Gmitrowicz. Neuropsychiatric symptoms and celiac disease. Neuropsychiatr Dis Treat. 2014; 10: 1961–1964.

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New Year and New Celiac Info…

Happy New Year to all of you!

This post will focus on updated information about adult celiac disease that was presented at the Celiac Disease preceptorship that I attended at the University of Chicago in December 2014. Prior to the hustle and bustle of the holidays I was able to write a bit about what I learned about pediatric celiac disease (see link). I hope to share more information from the preceptorship in upcoming months, as time allows…

Dr. Carol Semrad, a celiac specialist from the Celiac Disease Center at the University of Chicago, gave a presentation entitled “Celiac Disease: The Adult Perspective” on December 4th. Here are some of the “highlights” from her excellent and comprehensive lecture.

75% of patients with celiac disease are diagnosed during the adult years. Many have only mild, intermittent gastrointestinal (GI) symptoms that they may think are “normal.”  Many adults are actually overweight/obese at the time of diagnosis. Others may have other problems (with either mild or absent GI symptoms) such as low bone mineral density, iron deficiency anemia, and hepatitis.

Celiac disease can present in 4 different ways:

1. Classical: diarrhea, gas/bloating, and weight loss
2. Atypical: fatigue, constipation, anemia, osteoporosis, dermatitis herpetiformis (rash), neuropathy, infertility, etc.
3. Asymptomatic: No symptoms, but positive celiac antibodies and an abnomal small bowel biopsy
4. Potential (latent): No symptoms, positive celiac antibodies but normal small bowel biopsy

The incidence of classical celiac disease is 1:4500, but the incidence of atypical, asymptomatic, and latent is 1:133. Celiac disease is not a rare disease like so many of us were taught during medical school.

The duodenal biopsy remains important for celiac disease diagnosis in adults and must be performed prior to a patient starting on a gluten-free diet. As discussed elsewhere during the conference, a “gluten challenge” in adults consists of eating at least 1/2 slice of bread for 2 weeks prior to a small bowel biopsy (and 6 weeks prior to celiac blood antibody testing).

Although villous blunting is the hallmark of celiac disease on small bowel biopsy, there are other diseases that can also cause villous blunting, which include tropical sprue, infections (Giardia, Cryptosporidia), Crohn’s Disease, small bowel bacterial overgrowth, olemsartan enteropathy, autoimmune enteropathy, and Graft v. Host Disease.  Villous recovery will occur on the gluten-free diet in celiac disease only (this can be used to differentiate celiac disease from the other causes of villous blunting).

Dr. Semrad recommended that patients with any of the following problems be tested for celiac with a duodenal biopsy:

-Diarrhea with weight loss
-Unexplained iron deficiency anemia
-Early osteoporosis
-Neuropathy or ataxia
-Positive celiac antibody tests prior to going on the GF diet

“High-Risk” patients who should have screening celiac antibody tests performed include those who have any of the following:

-First degree relatives of those with celiac (parents, siblings, and children)
-Type 1 diabetes
-Autoimmune thyroid disease
-Irritable Bowel Syndrome
-Asthma
-Multiple Sclerosis
-Primary Biliary Cirrhosis
-Down, Turner, and William’s syndromes

Treatment for celiac disease should include all of the following:
1. Life-long, strict gluten-free diet, including consultation with a dietician who is knowledgable about celiac disease
2. Lactose-free diet to start
3. Daily multivitamin and calcium
4. Folic acid for all women of child-bearing age

Patients with newly diagnosed celiac disease should follow-up with their physician and dietician at 3-6 months, and then every 1-2 years. Celiac antibodies should be retested after 3-12 months on the GF diet. Despite this, only 44% of newly diagnosed celiacs in the U.S. follow-up with their physicians, and only 3% have any follow-up with a dietician!

80% of patients with celiac disease will start to have improvement within 2 weeks of starting the GF diet. 20% will not have improvement at the 6 month mark and will be ultimately be diagnosed with nonresponsive celiac disease. Ongoing gluten ingestion is the most common cause of nonresponsive celiac disease. I’ll discuss both nonresponsive and refractory celiac disease in more detail in an upcoming post.  The bottom line is that if one continues to have symptoms after going on the GF diet, that follow-up is necessary.

Thank you for reading, and as always, please feel free to comment, ask questions, etc. Also, as an aside, please check out the January/February 2015 issue of Gluten-Free Living Magazine. I am featured in Susan Cohen’s article, “It’s Routine,” along with some other really cool celiac advocates including Dr. Fasano.

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Celiac Disease and Muscular Pain, Weakness and Atrophy by Irish Heart

Hi all! It’s a super busy week for me as I wrap up work and prepare to travel to New York to represent all of us with celiac disease in the NYC marathon on Sunday November 2nd as a member of the Celiac Disease Foundation’s Team Gluten-Free.  I will be back to posting soon, but in the meantime wanted to re-post this excellent article about celiac disease and muscular issues that was written by my dear friend Irish Heart (shared with her permission). Like Irish Heart, I have suffered from neurological and musculoskeletal symptoms from my celiac diagnosis, which have, fortunately, improved with time. Hope you’re all doing well!  -Jess

My musculoskeletal and neurological systems took the biggest hit while I was suffering from years of malabsorption prior to my diagnosis. I was constantly in pain and losing the ability to tolerate exercise. Nearly 4 years after diagnosis, I am still rehabbing my muscles. We’ve spent a small fortune on physical therapy, occupational therapy, massage therapy and pelvic floor therapy programs. Without this intervention, I doubt I’d be walking now or have the full use of my arms. You can’t imagine what I have been through to get to this point, but suffice to say, I no longer have curled shoulders, rigid muscles, an inability to sit, stand or lie down for long periods, burning neuropathic pain from entrapped nerves and my muscles don’t feel like “wood” (as they were described in a report back in 2010). I do still have some mobility issues and I do still have painful knots called trigger points in some muscles, but I am not the head to toe giant knot I once was. Trigger points are not to be confused with tender points as used in the FMS “diagnosis”.

The pain level has reduced from a “just kill me now 10” to an “I don’t feel like crying every day 4”. And I’ll take it!

If you are like me, you’ve done all you can to get well and resolve the various extra-intestinal symptoms and conditions you developed because you were so ill and suffering from malabsorption for so long.

If you still have sore muscles, please don’t accept the all-purpose “fibromyalgia” syndrome that doctors slap on anyone with muscle pain and soreness. It’s much like “IBS”…a collection of symptoms, not a diagnosis and the treatment plan is abysmal and often useless.

Some suggestions, based on 3 years of reading articles:

(1) have blood tests done to rule other conditions that may co-exist with CD such as lupus, MS, myopathy and hypertonia.
(2) make sure your thyroid is functioning properly
(3) take a good B-Complex (Country Life has certified GF vitamins. for example)
And get your muscle-support from foods!

Calcium. Milk products or fortified non-dairy such as soy, rice or almond, canned salmon and sardines with bones, bok choy, brown rice, English walnuts, almonds, green leafy vegetables such as broccoli, collards, turnip greens, beet greens and dandelion.

Potassium. Fruits and vegetables are a richer source than animal foods. Try bananas, beans, pumpkin, chick peas, romaine lettuce and endive. Good animal sources are milk products, meat, poultry, and fish.

Iron. This mineral is well absorbed from kidney, liver, oyster, seafood, meat, fish, poultry, and egg yolk. Plant sources are not as easily absorbed. Try brown rice, peas, lentils and beans.

Magnesium. Rich plant sources are soybeans, buckwheat, black-eyed peas, almonds, cashews, lima beans, Brazil nuts, pecans, whole grain rice, peanuts, walnuts and bananas. Rich animal sources are halibut, them haddock with less in other fish, shellfish and chicken.

Phosphorus. Milk products and liver. Rich plant sources are peanuts and tree nuts like almond, cashew and walnut. Good amounts are in chickpeas, lentils, lima beans, cocoa and chocolate.

Selenium. Brazil nuts, pork kidneys, lamb kidneys, beef kidneys, pacific oysters, turkey giblets, snapper, lamb liver, halibut, chicken giblets, mussels – blue, chicken liver, tuna – canned, salmon, scallops, bacon, liverwurst, pork liver, crimini mushrooms – raw, sunflower seeds, shitake mushrooms, oyster mushrooms, corn bran, rice bran, corn flour, white rice flour.

Protein. Meat, fish, shellfish, milk and eggs are rich in protein. Best plant sources are tree nuts, soybeans, peanuts, legumes and seeds.

Vitamin B1. Pork, whole or 2% milk, salmon, halibut, chicken, beef and egg. Plants are pecans, sunflower seeds, filberts, walnuts, chestnuts, beans, peanuts, avocado, peas and brown rice.

Vitamin B3. Liver then oyster, milk, clams, pork, beef, chicken, egg, and trout. The richest plant source is almond. Good plants are brewer’s yeast, black-eyed peas, spinach, peanuts, chestnuts, avocado, asparagus, broccoli, soybeans, beans, brown rice, and orange juice.

Zinc. Highest animal source is the oyster. Rich animal sources include canned salmon, beef, liver, turkey neck, shellfish, poultry and fish. Good plants are soybeans, pumpkin seeds, dry peas and beans, brown rice and sunflower seeds.

Further reading here: Health in Depth: Muscle Weakness in Celiac Disease.” By C. Libonati. Published on www.glutenfreeworks.com on July 3, 2010.

And finally, please don’t settle for living with pain. Find a good therapist to help you slowly recondition your muscles and start you on a gentle stretching and/or weight training program. Gentle yoga is especially good as is Tai Chi. Best wishes as you continue your healing!

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Necrotizing enterocolitis: a devastating digestive disease of premature babies

I do not see celiac disease in my practice as a neonatologist as most of my patients are born prematurely, weigh less than 5 pounds at birth, and have never eaten wheat.  That being said, I have taken care of several babies with an intestinal condition that is much worse than celiac disease. It is called necrotizing enterocolitis (or NEC) and approximately 5-10% of the smallest premature infants develop it after birth. The incidence in the neonatal population overall is 1-2%, similar the rates of celiac disease in the adult population.

Babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed. Clinical signs of NEC include abdominal distension (babies’ bellies often become large and hard like a rock), bloody stools, delayed digestion, respiratory distress, and shock.  Once NEC develops, it can progress rapidly, and 25 to 30% of babies who develop NEC die. A healthy premature infant can develop NEC and be dead within 8 to 12 hours.

The cause of NEC is unknown.  It usually develops after the first week of life and, in most cases, after a baby starts to receive feedings. The risk of NEC is much higher in babies who receive formula than those who receive pumped breast milk (or donor breast milk) but we do see cases of NEC in babies who have received only breast milk.  Although we are able to treat NEC medically, with bowel rest and antibiotics, we are not quite sure which bacteria are the culprits. Similar to celiac disease, emerging research is showing that NEC may be associated with an overgrowth and colonization of babies’ guts with “bad” bacteria, and probiotics are being researched as a possible way to prevent NEC in preemies.

Although there is not any known association between NEC and celiac disease, I think it’s important for us to be aware that there are other digestive diseases out there for which there is much less known than celiac disease. Although we cannot prevent celiac disease from developing, at least not yet, we are able to treat it with the gluten-free diet.  Despite our best efforts to prevent NEC (through exclusive breast milk diets), it is still occurring at alarming rates, and the treatments do not always work. NEC has many parallels with food protein-induced enterocolitis, a disease of infants and children that I wrote a post about last spring.

The NEC Society has recently been founded by the mother of a premature baby who died from NEC-associated complications in 2012.  The missions of the NEC Society include to increase awareness of NEC, empower families affected by NEC, and to, ultimately, prevent it.  Please check out their website and share it with others who may be interested and/or helped by the information on it. One of my favorite posts from their site is called “Pointers for Parents of Preemies” from February 2014.

Lastly, out of curiosity, have any moms out there with celiac disease or non-celiac gluten sensitivity had an infant develop NEC? If so, would you be willing to share your story? Thank you!

 

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Celiac Disease Can be a Pain in the Joint

Unexplained joint pains (arthralgias) were one of the main symptoms that I dealt with prior to my celiac diagnosis. Throughout my twenties I had pain and stiffness in my fingers, knees and ankles that would come and go with no apparent explanation.  I ran track for part of high school and continued to run for fitness during college, but shortly after graduating had to stop running for a long time due to my joint issues. I was evaluated over and over again for lupus, rheumatoid arthritis, Lyme Disease, etc. but there were never any answers for why I had developed the pains. So I learned to live with them and I stopped running. Fortunately, since going GF in 2010 my arthralgias have almost entirely disappeared, and I was able to resume running again.

Based on previous research, up to 25% of people with celiac disease may experience joint pains. In just the last few months there have been a few interesting studies published about the relationship between celiac disease and joint issues.

A group of researchers published a paper last week showing a significant relationship between joint inflammation and celiac disease in children. They evaluated the knees, hips, and ankles of children with celiac disease (n=74) by ultrasound. They compared ultrasound findings of those with treated v. untreated celiac disease and found that 50% of those who were not on the GF diet had evidence of joint inflammation v. only 11% of those who were GF.

In a recent Tunisian study, researchers tested over 200 women with unexplained arthralgias (joint pains) for celiac disease.  They found much high rates of undiagnosed celiac disease in their sample (2.37%) than in the general population in their country (0.28%).  Interestingly enough, all of the women who were diagnosed did have other symptoms of celiac disease, such as anemia and infertility, when their medical records were reviewed after-the-fact.

In addition, Dr. Guandalini refers to the relationship between celiac disease and arthritis in his review of celiac disease in children that was published earlier this month in JAMA Pediatrics (see my previous post for a summary and for the actual reference).

Although the relationship (or lack of one) between juvenile idiopathic arthritis (JIA) and celiac disease appears to be debatable in the medical literature, this story, which was published last year in the NY Times, does present a compelling case for a link, at least in some cases.

Have any of you experienced celiac-related joint pains? If so, please share, as your stories may lead others to be diagnosed…

References:

  1. Lubrano E, Ciacci C, Ames PR, et al. The arthritis of coeliac disease: prevalence and pattern in 200 adult patients. Br J Rheumatol. 1996;35(12):1314.
  2. Iagnocco ACeccarelli FMennini M, et al. Subclinical synovitis detected by ultrasound in children affected by coeliac disease: a frequent manifestation improved by a gluten-free diet.Clin Exp Rheumatol. 2014 Jan 20. [Epub ahead of print]
  3. Ghozzi MSakly WMankaï A, et al. Screening for celiac disease, by endomysial antibodies, in patients with unexplained articular manifestations. Rheumatol Int. 2013 Dec 1. [Epub ahead of print]
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Mast Cell Activation Syndrome Madness

At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following:

  • MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders).
  • Women make up the majority of patients with MCAS.
  • Symptoms are caused by having too much histamine in one’s system and can affect almost any part of the body (see comprehensive list below).
  • MCAS is very common (there is pilot data showing that 17% of Germans are affected to some degree).
  • It is acquired during life; no one is born with MCAS and it is not yet known why it develops in certain people.

I am one of the unlucky people to have acquired MCAS during my journey through life. Although I really wish that I didn’t have it, I am sharing my story in hopes that I can help others.

Mast cells are innate immune cells that play a role in defending the body against bacteria, viruses, and parasites, but are best known for their participation in the allergic response. When mast cells degranulate, or burst open, histamine and other chemicals are released, leading to symptoms which we associate with allergies, including having a runny nose, wheezing, hives, etc. Most of us are familiar with the antihistamine drugs that are used to treat allergic symptoms, such as Claritin, Allergra, and Zrytec. Although these medications do not prevent mast cells from releasing histamine, they prevent symptoms by blocking histamine receptors.

In mast cell activation syndrome (also known as mast cell activation disorder, or MCAD), mast cells have excessive degranulation, release too much histamine, and adverse symptoms develop. Symptoms can vary from person to person and will often become worse in the same person with time. Some patients will experience only one or two symptoms from having too much histamine floating around, and other patients will experience many, many symptoms. Although urticaria (hives) is the classic symptom associated with mast cell degranulation, in many cases patients with MCAS do not have urticaria or any skin findings. I have never had hives and the only skin symptom that I get from MCAS is facial flushing from time to time.

According to the Mastocytosis Society Canada’s website, the most common symptoms of MCAS include the following:

  • Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption* (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?)
  • Low blood pressure*
  • Fatigue*
  • Wheezing*
  • Itching, flushing*, hives
  • Episodes of fainting or dizziness
  • Bone pain*
  • Cognitive impairment (brain fog)*
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart*
  • Sensitivity to sunlight

* = symptoms that I have personally experienced as a result of MCAS. I saw several different subspecialists before we were able to piece all of these symptoms together.

Common triggers for mast cell degranulation in those of us with MCAS include the following:

  • insect stings
  • pain medications such as NSAIDs and narcotics
  • foods and drinks that are high in histamine or are known to trigger histamine release
  • extreme temperatures, both hot and cold
  • exercise
  • strong scents including perfumes and chemicals
  • friction, pressure, or vibration on the skin
  • emotional and physical stress

At this point, my only known triggers for MCAS are high histamine foods and foods that are histamine-releasing, including fermented foods and foods/drinks that have added sulfites. Please see my previous post “Celiac Disease and Multiple Food Intolerances” from July 2013 for more details on food triggers and high histamine foods. Since beginning treatment for MCAS late last summer, the other food intolerances that I had attributed to my celiac disease have markedly improved. My sulfite allergy/intolerance also appears to have been as result of untreated MCAS (see link).

The first case reports of MCAS were just published in the medical journals in 2007 or 2008, so in most cases, the only doctors who have learned about MCAS during medical school are the really young ones. Systemic mastocytosis (SM) is a well-known, very serious mast cell disease in which there are too many mast cells in the body that invade into other parts of the body, including the bone marrow. In MCAS patients the numbers of mast cells are normal (this is what differentiates it from SM) but the mast cells that are present are overly active and degranulate much more often than they should. SM and MCAS share a lot of the same symptoms but MCAS is on a milder scale.

According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following:

  1. Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms.
  2. Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL.
  3. Plasma prostaglandin D2 (PGD2) and heparin levels.
  4. Chilled 24 hour urine sample for PGD2 and methylhistamine.

In many cases of MCAS the baseline tryptase and histamine levels can be normal, so it is important for a patient to have these labs done two times (both at baseline and when symptomatic). Both blood and urine levels of histamine and tryptase should rise after mast cells are triggered. Therefore, MCAS cannot be ruled out based on one set of normal labs. This differs from many other diseases that can be ruled out if an initial set of lab tests are normal. In my case I had abnormally high urine prostaglandin levels on two separate occasions and my tryptase and histamine levels rose when I was symptomatic (both were totally normal at baseline when I did not have any symptoms going on).

Treatment options for MCAS include H1 antihistamines (such as Claritin, Allegra, and Zrytec and their generic forms), H2 antihistamines (such as Pepcid and Zantac), and mast cell stabilizers such as ketotifen and cromolyn sodium. I initially had a difficult time finding an H1-blocking antihistamine that worked for me, as most contain cornstarch and other sulfited ingredients which are triggers for my mast cells to degranulate. But I have recently done very well taking a compounded sulfite-free form of generic Claritin twice a day. I have also done my best to follow a low-histamine diet, and I believe that this has made the biggest difference in my symptoms improving. Yasmina, the Low Histamine Chef, who also has MCAS, has been a wonderful resource for learning about the low-histamine diet and recipes. If I keep my overall histamine intake low, I find that I can indulge in an occasional glass of wine or enjoy a small serving of aged cheese without starting to wheeze like I used to in the past.

Interestingly enough, since starting on this MCAS journey I have met about a dozen or so other women who have both celiac disease and MCAS.  Many of us have found that our MCAS/histamine symptoms seem to spiral out of control after getting accidentally “glutened.” DAO, the enzyme in our bodies that breaks down histamine, is produced in our digestive systems, so it does make sense that the gut damage we experience from gluten may lead to a decrease in DAO (and hence, our bodies getting overwhelmed with histamine that cannot be broken down). My gut instinct (no pun intended) is that many of us with celiac disease and non celiac gluten sensitivity have MCAS going on to some degree. I guess that time will tell…In the meantime, if you are experiencing symptoms that seem puzzling, involve multiple systems of your body, and popped up out of the blue, I encourage you to look into MCAS as a possibility and discuss your symptoms with your doctor.

There are some great references on the internet for learning about mast cell activation syndrome and histamine intolerance, including the following:

1. Mastocytosis and Mast Cell Disorders from the Mastocytosis Society Canada’s website (www.mastocytosis.ca). Accessed Jan. 3, 2014.

2. Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome by Lawrence Afrin, MD, chapter 6 in the book Mast Cells edited by David B. Murray, 2013.

3. Histamine Intolerance on Allergy UK website (www.allergyuk.org). Accessed Jan. 3, 2014.

4. Mast cell activation syndrome: a newly recognized disorder with systemic clinical manifestations.  Hamilton, M., Hornick, J., Akin, C., et al.  J Allergy Clin Immunol. 2011. 128 (1): 147-152.

5. Mast Cell Activation Syndrome: A Review.  Frieri, M., Patel, R., Celestin, J.  Curr Allergy Asthma Rep. 2013. 13: 27-32.

6. Histamine Intolerance by Dr. Janice Joneja on webpage www.foodsmatter.com. Accessed Jan. 3, 2014.

7. Expanding spectrum of mast cell activation disorders: monoclonal and idiopathic mast cell activation syndromes. Picard, M., Giavina-Bianchi, P., Mezzano, V., et al.  Clinical Therapeutics. 2013. 35(5): 548-562.

Dr. Afrin’s chapter on MCAS for physicians (#2 above) is the most comprehensive document that I have come across regarding all that is known about MCAS.

Lastly, I would like to thank my friend Harriet for all of her advice and help on this journey. If it was not for her assistance, I would probably still be wheezing and flushing with chronic brain fog and irritable bowel syndrome despite being strictly gluten free.

Happy New Year and thank you for reading!

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My, Oh My, Peripheral Neuropathy

I spent a good chunk of last Christmas Eve in an MRI scanner, getting my spine analyzed for the white matter lesions of multiple sclerosis (MS). Mike, the MRI technician, piped George Winston’s “December” CD through my MRI headphones, but the music did little to drown out the loud hammering sounds of the MRI and the thoughts that were racing in my head. I prayed and bargained while I was in the scanner, with thoughts such as, “If I do have MS, please let it be relapsing-remitting and not primary progressive,” and, “If I am going to become disabled from MS, please let it happen after my 4 babies have been raised and are out of the house.”

I developed a peripheral neuropathy (nerve damage) last fall, about 2 and a half years after going gluten free for my Celiac Disease diagnosis. In September 2012 I felt better than I had in quite a while and was training for my first half marathon after having Claire in March. Then, the first week of October, I had a pretty bad “glutening” episode (thanks to Trader Joe’s) which took me quite a while to bounce back from. Two weeks later, while visiting family in Boston, I developed persistent numbness and tingling in my hands, feet, tongue, and right upper lip, followed by extreme fatigue and difficulty concentrating/lapses in my short term memory. I went to see a neurologist after my symptoms had persisted for about a week and a half. My full neurologic exam at this point was unremarkable. My brain MRI was normal. I was evaluated for Lyme Disease, lupus, diabetes, sarcoidosis, and several other autoimmune and vascular diseases. My Vitamin B12 and copper levels were normal. My thyroid function was assessed (I have Hashimoto’s Disease and take daily levothyroxine) and everything thyroid-wise was normal as well. My neurologist told me that based on recent research, as well as in his experience, Celiac Disease is the third most common cause of the development of a peripheral neuropathy, behind diabetes and alcoholism. He told me that if my neuropathy was indeed Celiac-related, that it should resolve in 3-6 weeks. And it did. I was out running one day and I finally felt like my feet were back to normal after weeks of running with numb feet (which, looking back, probably wasn’t the smartest thing to do!)

We took all gluten out of our home at this point to avoid exposing me to any inadvertent gluten cross-contamination. I stopped eating GF processed foods entirely. But then Thanksgiving came, and I know that I got a hit of gluten somewhere, and about one week later my neuropathy returned to me. I was in the middle of watching my daughter perform in a Christmas ballet routine with Martina McBride and I had a sudden onset of numbness in my hands, feet, tongue, and upper right lip. Again, the symptoms lasted for days which turned into weeks. I returned to my neurologist and he ordered the rest of the testing for multiple sclerosis: a retinal exam to look for optic nerve thinning, visual evoked potentials, and the Christmas Eve spinal MRI, all of which were normal. The numbness and tingling slowly resolved and were gone by New Year’s. I was grateful to not have MS.

Since December, I have had the neuropathy symptoms return only twice, once in January and once in July. They have both occurred after traveling, the only time that I am really ever taken out of my gluten free home (aka safe haven) and been exposed to cross-contamination. Fortunately,  for reasons that are still unclear to me, my neuropathy symptoms lasted just days, instead of weeks, these last two times.

I started this blog last fall as a way of coping with my new neurologic symptoms from Celiac Disease. I had truly under-appreciated the effects that small amounts of  gluten cross-contamination could have on my body until I developed the peripheral neuropathy. Although I did write about the neurologic effects of gluten last fall (see link), I was not prepared to share my personal experience until now.

In conclusion, many patients with Celiac Disease will go on to develop peripheral neuropathies, even while on a gluten free diet. If you have Celiac Disease or non celiac gluten sensitivity and develop symptoms of a possible peripheral neuropathy, please be evaluated by a neurologist to make sure that something treatable, such as a vitamin deficiency or Lyme Disease, is not going on.

For more information on Celiac Disease and peripheral neuropathy, please check out the following links:

1. Peripheral Neuropathy. National Foundation for Celiac Awareness. Accessed 9/10/2013.

2. Celiac Neuropathy.  The University of Chicago Celiac Disease Newsletter. Spring 2010. Accessed 9/10/2013.

3. Chin, R. and Latov, N. Peripheral Neuropathy and Celiac Disease. Current Treatment Opinions in Neurology. 2005; 7: 43-48.

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Celiac Disease and Multiple Food Intolerances

There are many of us with celiac disease who develop additional food intolerances after going gluten free.  Despite maintaining control of my celiac symptoms by being strictly gluten free, I have become intolerant to soy (2011), sulfites (2012), and too much dairy (late 2012-early 2013).  My allergy skin prick tests for soy and milk were negative, which shows that my reactions are not IgE mediated, and, thus, not “typical” food allergies in which there would be a concern about anaphylaxis. I have no knowledge of getting sick from soy, dairy, or sulfites prior to my celiac diagnosis in 2010, however, I may not have realized that I was reacting to these foods because I felt so cruddy from chronic gluten ingestion.

I have scoured the medical literature and spoken with as many other MDs as I can, and I have found no research or publications that show a link between celiac disease and other food intolerances.  There was a nice Italian study published last fall which showed that patients with “wheat sensitive” irritable bowel syndrome (IBS) do have a high incidence of food intolerances, and this led me to the conclusion that many of us with Celiac Disease may also have IBS.  Please see my post from earlier this year for additional information.  Likewise, last month in The American Journal of Gastroenterology, there is a Swedish study (see references) in which the authors describe the multiple food intolerances seen in patients with IBS.  The most common culprits for gastrointestinal symptoms in their sample of IBS patients included dairy (49%), beans/legumes (36%), wine/beer (31%), apples (28%), flour (24%), plum (23%), and pork (21%).  They reiterate that all of the following foods can precipate digestive symptoms in IBS patients: dairy, foods which are high in FODMAPS (fermentable oligo-, di-, monosaccharides, and polyols), high fat and spicy foods, foods with high levels of biogenic amines, i.e. histamine (such as soy), lectins (present in beans), and preservatives, such as benzoic acid and sulfites.

Although I do have “IBS” type symptoms after ingesting soy and sulfites, as well as large amounts of dairy, most of my symptoms of food intolerances are in other parts of my body.  When I eat soy I develop headaches, nausea, fatigue, flushing, and joint pains.  Every time I have developed this constellation of symptoms, I have been able to trace them to accidental soy exposure.  With sulfites I develop shortness of breath, wheezing, and flushing right away, followed by headaches, fatigue, joint pains, numbness, “brain fog,” and I overall feel lousy. With suflites I feel very similar to how I feel after being glutened, except when I get glutened I do not have the wheezing or shortness of breath occur.  You can read more about my sulfite issues in my previous post.

So, yes, while I believe that many of us with Celiac Disease have IBS, and that our intermittent digestive symptoms can be attributed to IBS, the real questions are why do so many of us have IBS (leading to additional food intolerances) and what is the real cause for our IBS symptoms?

Through reading, doing online research, and discussions with others who I have met through social networking, I think that the answer is histamine.  I believe that some of us with Celiac Disease are experiencing a histamine overload which is waging war on our bodies.

Histamine is a chemical produced by two types of cells in our bodies: basophils (a type of white blood cell) and mast cells. It is involved in the immune response and is an inflammatory agent.  Most of us are familiar with histamine being overproduced in hayfever and other seasonal allergies, and many of us have to take antihistamines, such as Claritin and Zrytec, to decrease allergic symptoms.

There are many foods which are high in histamine and/or cause histamine to be released. In most cases, the excess histamine produced after eating these foods is either stored or inactivated by the body. However, if one is lacking the enzymes that are responsible for the breakdown of histamine, symptoms can occur.  Also, if one has overly active mast cells, too much histamine can be produced, which overwhelms the body.  This is called mast cell activation syndrome (MCAS), and I plan on discussing this topic in my posts in the upcoming months. This is a very newly recognized disorder, and most of the journal articles about MCAS have been published in the last 24 months.  It did not exist when I was medical school, so few doctors know about it. Two great resources for mast cell disorders who I have met online who have been very helpful include Yasmina, The Low Histamine Chef, and Dr. Hornet Bupp on Twitter.

I will leave you with a list of histamine rich foods to ponder.  I found the list interesting, as I have had aversions to many of these foods for as long as I can remember, including pickles, sauerkraut, greek yogurt, sardines, mayo and sour cream. I have also avoided all condiments since I was a young child…

Histamine-Rich Foods (including fermented foods):

  • Alcoholic beverages, especially beer and wine.
  • Anchovies
  • Avocados
  • Cheeses, especially aged or fermented cheese, such as parmesan, blue and Roquefort.
  • Cider and home-made root beer.
  • Dried fruits such as apricots, dates, prunes, figs and raisins (you may be able to eat these fruits – without reaction – if the fruit is thoroughly washed).
  • Eggplant
  • Fermented foods, such as pickled or smoked meats, sauerkraut, etc.
  • Mackerel
  • Mushrooms
  • Processed meats – sausage, hot dogs, salami, etc.
  • Sardines
  • Smoked fish – herring, sardines, etc.
  • Sour cream, sour milk, buttermilk, yogurt – especially if not fresh.
  • Soured breads, such as pumpernickel, coffee cakes and other foods made with large amounts of yeast.
  • Soy and soy sauce
  • Spinach, tomatoes
  • Vinegar or vinegar-containing foods, such as mayonnaise, salad dressing, ketchup, chili sauce, pickles, pickled beets, relishes, olives.
  • Yogurt

Histamine-Releasing Foods:

  • Alcohol
  • Bananas
  • Chocolate
  • Eggs
  • Fish
  • Milk
  • Papayas
  • Pineapple
  • Shellfish
  • Strawberries
  • Tomatoes

Lastly, here is a lovely diagram of mast cells which I am saving here so that I can find it for future posts on mast cell disorders! Image is from Role of mast cells in allergic and non-allergic immune responses: comparison of human and murine data. Stephan C. Bischoff. Nature Reviews Immunology 7, 93-104, February 2007).

mast cell #2

References

1. Bohn, L., et al. Self-reported food-related gastrointestinal symptoms in IBS are common and associated with more severe symptoms and reduced quality of life.  The American Journal of Gastroenterology. May 2013. 108: 634-641.

2. Foods that contain histamine or cause the body to release histamine, including fermented foods. List from Michigan Allergy, Sinus, and Asthma specialists. http://www.michiganallergy.com/food_and_histamine.shtml.

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Celiac Disease and Endometriosis

As I was doing my weekly glance through the PubMed database (www.pubmed.gov) I came across an interesting letter to the editor in the Archives of Gynecology and Obstetrics entitled, “Celiac Disease and Endometriosis: What is the Nexus?” Endometriosis is a common gynecologic disorder, which effects approximately 10% of women of childbearing age. It involves the development of endometrium, which is the tissue which lines the uterus, in areas of the body outside of the uterus. Symptoms of endometriosis include heavy menstrual periods, abdominal and pelvic pain, abnormal menstrual cycles, and infertility. Although the exact cause of endometriosis is unknown, theories include retrograde menstruation (endometrial cells from the uterus flow backward into the fallopian tubes instead of out of the body during menstruation), an abnormal placement of embryonic stem cells in the pelvic cavity which produce endometrial tissue, and/or an immune system disorder.

Endometriosis is associated with having the HLA-DQ2 and DQ8 genes (which are also present in approximately 96% of patients with Celiac Disease), as well as the DQ7 gene, which has been associated with Celiac Disease in some southern Italians, Sicilians, and Sardinians.

Two studies published within the last few years have shown associations between Celiac Disease and endometriosis. Researchers in Sweden (Stephansson, et al.) reviewed the medical records of over 11,000 women with Celiac Disease in 2011. Compared with controls, women with Celiac Disease were found to be at a much higher risk of having endometriosis, especially in the first year after diagnosis with celiac disease (overall hazard ratio of 1.39).  The authors postulate that there must be a shared inflammatory process in both disorders. Likewise, researchers in Brazil found that 2.5% of women diagnosed with endometriosis also had Celiac Disease (Aguiar, et al, 2009). Please see the references section for links to these two studies.

The gluten free diet has recently been recommended as a strategy to manage the pain of endometriosis. In a pilot study in Italy, 75% of women with endometriosis had a decrease in pain symptoms after 12 months on the gluten free diet (see link in reference section). This strongly suggests that gluten sensitivity and/or Celiac Disease plays a role in endometriosis.

Although I do not have endometriosis, I have interacted with many women through social networking who do have both gluten intolerance and endometriosis. I can say that my periods have become significantly lighter and less painful since going gluten free after my Celiac diagnosis in 2010. I can also say, without a doubt, that my sensitivity to gluten seems to ebb and flow with my menstrual cycle. I seem to be the most sensitive to gluten cross contamination in the 7-10 day stretch before my period, when my estrogen levels are their highest.

With time, I hope that more research is done examining the link between celiac disease and gynecologic disorders. After reading up on endometriosis I did a PubMed search on “Celiac Disease and Polycystic Ovarian Syndrome (PCOS)” and came up with one article from 2002 that was published in Turkey and did not find an association between the two conditions. I have a feeling that if the study was reproduced in the U.S., on a large scale, that an association between Celiac Disease and PCOS would be shown.

For more information on endometriosis, please check out the Mayo Clinic’s website. Rebecca, from “Pretty Little Celiac,” also wrote about endometriosis on her page in January 2013 (see link.)

References:

1. Mormile, R. and Vittori, G. Celiac disease and endometriosis: what is the nexus? Archives of Gynecology and Obstetrics; June 2013 (e-pub, ahead of print).

2. Stephansson, O., Falconer, H., Ludvigsson, J. Risk of endometriosis in 11,000 women with celiac disease. Human Reproduction. 2011; 26 (10): 2896-2901.

3. Aguiar., F., et al. Serological testing for celiac disease in women with endometriosis. A pilot study. Clin Exp Obstet Gynecol. 2009; 36(1): 23-25.

4. Marziali, M. et al. Gluten-free diet: a new strategy for management of painful endometriosis related symptoms? Minerva Chir. 2012 Dec; 67(6): 499-504.

Coeliac_path

Nonresponsive Celiac Disease

Nonresponders are the 5% of Celiac patients who have either persistent symptoms and/or abnormally high Celiac antibodies after two years on the gluten free diet.

According the most recent medical review in the “Up to Date” database, there are 5 main categories of nonresponders to the gluten free diet:

  1. Patient is continuing to eat gluten. This is the most common cause of persistent symptoms. This can be on purpose (i.e. taking a little bite of a gluten containing food every once in a while) or accidental (i.e. not realizing that a child is nibbling her wheat containing Playdough at school).
  2. Patient doesn’t actually have Celiac Disease.  For example, elevated serum antigliadin IgA antibodies may be a false positive. Small intestinal villous blunting may be caused by any of the following: hypogammaglobulinemia, acute infectious gastroenteritis, lymphoma, Crohn’s Disease, and/or a milk protein intolerance.
  3. There is a second disease present, in addition to Celiac, which is causing symptoms. Lactose intolerance, irritable bowel syndrome, small bowel bacterial overgrowth, pancreatic insufficiency, and microscopic colitis can all lead to digestive symptoms in patients with Celiac Disease. I recently wrote about having the dual diagnosis of Celiac Disease and Irritable Bowel Syndrome (see link).
  4. Refractory sprue is Celiac Disease which has never improved, or recurs after a period of “remission.”  It usually needs to be treated with steroids or other drugs that suppress the immune system, as it can lead to #5.
  5. Ulcerative jejunitis and/or intestinal lymphoma. Patients with ulcerative jejunitis have symptoms of malabsorption, fatigue, loss of appetite, weight loss, abdominal pain, diarrhea, and fever despite being on a gluten-free diet. Small bowel obstructions may occur.  Lymphomas have similar symptoms to ulcerative jejunitis, but may also be associated with fevers and abdominal masses.

The bottom line is that If you do not feel significantly better after two years on the gluten free diet, you need to work with your doctor to figure out the reason why. Untreated refractory sprue, ulcerative jejunitis, and lymphoma can lead to death. This is yet another reason to recommend screening to our family members…and if any of my 4 siblings are reading this, yes, you need to get tested or I will continue to badger you about this for this rest of your lives!

References:

1. Cleveland Clinic Center for Continuing Education.  “Celiac Disease and Malabsorptive Disorders.” By J. Wakim-Fleming.

2. “Management of Celiac Disease in Adults.” By Ciclitira, P.J.  UpToDate, April 10, 2013. www.uptodate.com.

CFS

Chronic Fatigue Syndrome and Celiac Disease

I recently did an online continuing medical education activity on Chronic Fatigue Syndrome (CFS).  This is a diagnosis which I never see in my patient population, so I found it interesting to learn about.

According to the presentation, CFS is severe fatigue that persists for at least six months and results in a significant decrease in activity. The fatigue occurs in combination with at least 4 of the following symptoms on a regular basis: joint pain, impaired memory and/or concentration, enlarged lymph nodes in the neck, unrefreshing sleep, sore throat, muscle pains, and headaches.  CFS is a diagnosis of exclusion, which means that other causes of symptoms need to be ruled out, such as an underactive thyroid gland, before a diagnosis can be made.

As soon as I read this info, the first thought that went through my mind was how similar the CFS symptoms seemed to how I would feel if I had to go back to eating gluten again.  Joint pains, “brain fog,” fatigue, and enlarged lymph nodes were all chronic problems which I experienced in the months before my Celiac diagnosis.

The educational activity included 3 case reports of real patients with chronic fatigue syndrome. The third report described a 52 year old woman with Chronic Fatigue Syndrome. She was previously healthy, but developed fatigue and chronic pain following a trip to Asia.  She did have a past medical history of depression, high blood pressure, and environmental allergies.  Her physical exam was normal outside of having some fibromyalgia trigger points (these are areas of the body which are tender when palpated).  The patient had low Vitamin D levels, but her thyroid function, iron levels, and autoimmune screening tests were normal. She was started on Vitamin D supplements and began psychological therapy, with minimal improvement in her chronic fatigue symptoms.  Since her Vitamin D levels remained low, despite supplementation, she was tested for Celiac Disease.  She did have Celiac Disease, and she had an almost total resolution of her symptoms of CFS within 6 weeks of going gluten free.

The bottom line is that you or a loved one have been diagnosed with chronic fatigue syndrome, please make sure that Celiac Disease has been excluded.  I tried to search the medical literature for information linking CFS with non-celiac gluten sensitivity, but in usual fashion, there has been no research looking for a link between the two problems.

References

“A Case Based Approach to Chronic Fatigue Syndrome.” Power Point presentation moderated by Anthony Komaroff, MD, Professor of Medicine, Harvard Medical School. Released April 19, 2013 on http://www.medscape.org/viewarticle/782106?src=wnl_cme_revw.

Centers for Disease Control. Chronic Fatigue Syndrome (CFS). Accessed 5/12/2013. http://www.cdc.gov/cfs/index.html.

Chronic fatigue syndrome: oxidative stress and dietary modifications. Logan ACWong C. Altern Med Rev. 2001 Oct;6 (5):450-9.

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Celiac Disease and the Thyroid Gland

If you have Celiac Disease, it is important that you know a bit about your thyroid gland, as you are at a high risk of autoimmune thyroid disease. Experts estimate that between 8 and 12% of people with Celiac Disease have, or will eventually develop, problems with their thyroid gland. Conversely, between 3 and 5% of people with autoimmune thyroid disease will develop Celiac Disease. I was diagnosed with Hashimoto’s Disease (hypothyroidism) in 2003, seven years before my Celiac diagnosis.

The thyroid gland is a butterfly-shaped gland that is present in the neck region, just under the region of the “Adam’s apple,” which is made up of two lobes (see diagram).

Illu_thyroid_parathyroid

Our thyroid glands secrete hormones that regulate metabolism, play a role in the growth and development of our bones and muscles, and impact brain and heart function. Thyroid gland dysfunction can lead to a rapid decline in health. Prior to my diagnosis with Hashimoto’s Disease, I had a 4 to 6 month history of overwhelming fatigue, dry skin, puffiness around my eyes, hair thinning, mental sluggishness, and feeling cold all of the time. I was about to scan and put in a photo of myself in the weeks leading up to my diagnosis, but I look so atrocious that I did not want to scare any of you. It is available upon request!

In Hashimoto’s Disease, the body makes auto-antibodies which lead to thyroid inflammation and destruction, which in turn causes the the thyroid to be under-active (also called hypothyroidism). Hashimoto’s is the most common autoimmune thyroid disease that is associated with Celiac Disease. Common symptoms associated with hypothyroidism include lethargy, depression, muscle cramps, constipation, dry skin, cold intolerance, and/or weight gain. The treatment for hypothyroidism is to take synthetic thyroid hormone, which is called levothyroxine. The brand name for levothyroxine is Synthyroid.

If you are started on levothyroxine, it is important to have your thyroid hormone levels checked frequently, so that your dose can be adjusted as needed. Pregnancy, the postpartum period, lactation, menopause, and other events associated with hormonal changes can also effect the thyroid gland, so it is important to have your thyroid hormone levels monitored closely during these times.

Once I went gluten free, my levothyroxine dose decreased from 150 mcg/day to 125 mcg/day. From the reading that I have done, this is not unusual, and many Celiacs experience a need for less thyroid hormone once off of gluten. However, it is very unusual for hypothyroidism to ever totally resolve. This means that if you are diagnosed with Hashimoto’s Disease, you should anticipate being on thyroid hormone replacement therapy for the rest of your life.

A few other things which I have learned about levothyroxine: 1. Make sure to take it on an empty stomach (I take mine first thing in the morning, about 30 to 45 minutes before breakfast), 2. To take separately from vitamin and mineral supplements, as some can interfere with its absorption, and 3. Make sure that the levothyroxine which you are taking is gluten free.  I have been taking generic levothyroxine manufactured by Lannett since October 2012 without any issues. www.glutenfreedrugs.com is a great resource to check out the GF status of drugs and supplements.

Grave’s Disease is the most common cause of hyperthyroidism, or overactive thyroid. In this disease, auto-antibodies stimulate the thyroid gland to produce an excess of hormones. Hyperthyroid symptoms are the opposite of those seen in Hashimoto’s Disease and include weight loss, elevated body temperature, irritability, tremors, heart palpitations, and insomnia. Treatment options for Grave’s Disease include antithyroid medications, radioactive iodine, and surgery. For more on Grave’s Disease, please see the following link (taken from the womenshealth.gov website).

The main test used to screen for thyroid problems and monitor thyroid function is called a TSH (short for thyroid stimulating hormone). In hypothyroidism, the TSH is too high, and in hyperthyroidism, the TSH is too low. In most cases test results should be available within 24 hours of having blood drawn. T4 and T3 levels are also monitored closely during diagnosis and treatment.

My hypothyroid symptoms improved dramatically within one week of starting on Synthroid after my diagnosis with Hashimoto’s Disease. I urge you to have your TSH checked if you or a loved one are experiencing any unusual symptoms which may be due to thyroid dysfunction.

The bottom line is that if you have Celiac Disease, you need to have your thyroid function monitored, and if you have autoimmune thyroid disease, you should strongly consider being screened for Celiac Disease, especially if any concerning symptoms develop.

For more information, please check out the following links:

1. Celiac Disease and Autoimmune Thyroid Disease. Ch’ng, C., et al. Clin Med Res. 2007; 5(3): 184-192.

2. “Celiac Disease, Thyroid Disease Often Found Together. Two Autoimmune Disorders Could Share Common Trigger.” By Jane Anderson, About.com Guide; updated January 19, 2012.

3. “Celiac and the Thyroid.” NFCA website: www.celiaccentral.org. Accessed 04/23/2013.

4. Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: an Italian multicenter study. Sategna-Guidetti C, Volta U, Ciacci C, Usai P, Carlino A, De Franceschi L, Camera A, Pelli A, Brossa C. Am J Gastroenterol. 2001 Mar;96(3):751-7. See link.

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It is Possible to Have Both Celiac Disease and I.B.S.

Like many, I had a long delay in my diagnosis of Celiac Disease and walked around for years with a label of Irritable Bowel Syndrome (I.B.S.) Once I was diagnosed with Celiac Disease in 2010, I threw my diagnosis of I.B.S. in the garbage. From a medical standpoint, I have ignored discussions and articles regarding I.B.S., digestive problems in fibromyalgia, “functional bowel disease,” FODMAPs, etc. because I have assumed that they do not apply to me. Also, the largest patients I take care of are about 12 lbs., and, fortunately, do not suffer from I.B.S.

I have been trying to search for answers as to why so many of us with Celiac Disease also have multiple food intolerances. With our villous blunting and poorly functioning small intestines before diagnosis, it makes physiologic sense to have a temporary lactose intolerance. I had severe lactose intolerance when I was first diagnosed with Celiac Disease and was unable to tolerate dairy until I had been gluten free for at least 6 months. I can now tolerate a moderate amount of dairy without the development of GI symptoms. However, since being diagnosed with Celiac Disease in 2010, I have developed intolerances to both soy protein (after one year of being GF) and sulfites (right around my two year anniversary of being GF). When I ingest soy proteins or sulfites I have immediate digestive distress followed by a “delayed” onset of inflammatory symptoms about 24 hours later.

Recent research has shown that I.B.S. patients often have multiple food intolerances, of which wheat is one of the most common. A group of Italian researchers published a paper last fall that highlighted that many patients with “wheat sensitive” I.B.S. have other food intolerances, the most common of which are dairy, tomatoes, eggs, and chocolate. I did write a bit about this last December in a post which I titled, “What Now, Wheat Sensitivity?”  The original research article by Carrocchio, et al. can be found here.

Although I used to think of I.B.S. as being a “diagnosis of exclusion,” I have confirmed with the University of Chicago Celiac Disease Center, as well as two other gastroenterologists, that it is possible to have both Celiac Disease and I.B.S. With my development of multiple food intolerances and “super sensitivity” to traces of gluten, I believe that I may have both Celiac Disease and “wheat sensitive” I.B.S. Through my online interactions with many other Celiacs, I am pretty sure that I am not alone in this either. Due to the plethora of information regarding Celiac Disease on the internet, we are fortunate to be able to read and learn a lot about the treatment for Celiac Disease (which, as we know, is the gluten free diet). We have much less information about what to do about I.B.S. symptoms. In my case, I was totally in the dark as to the fact that I probably still have I.B.S., as I figured that all of my gut problems and symptoms were from untreated Celiac Disease.  However, in reading up on I.B.S. for this article, I have learned that April is I.B.S. Awareness month.  There is also a huge online IBS support forum which can be found at www.ibsgroup.org.

In brief, I.B.S. is a chronic condition of the digestive system of which the most common symptoms are abdominal pain and diarrhea and/or constipation. It is estimated that 10-20% of the U.S. population, at any given time, meets criteria for having I.B.S. Although the exact cause of I.B.S. is unclear, current theories include that it involves having a “spastic” colon, a history of a previous GI infection, food intolerance(s), stress, and/or overactive nerves in the GI tract. Current treatments for I.B.S. include dietary changes, psychological therapies, and medications, including antispasmodic drugs, antidepressants, and anti-diarrheal therapies.

The low FODMAPs diet (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) is one of the most popular nutritional treatments for I.B.S. The underlying theory is that an alteration in small intestinal gut flora leads to the fermentation of short chain carbohydrate components (FODMAPs) in the large intestine. Fermentation by colonic bacteria causes adverse symptoms such as gas, abdominal pain, diarrhea, and constipation which can lead to I.B.S.

FODMAPs include the following: fructans (found in wheat, rye, onion, garlic, artichokes, asparagus, and chocolate), fructose (found in honey, fruits, high fructose corn syrup), galactans (beans, lentils, and legumes, such as soy), polyols (found in apples, apricots, cherries, nectarines, peaches, pears, prunes, watermelon, blackberries, avocados, mushrooms, and artificial sweeteners, such as mannitol, soribtol, and xylitol), and lactose (dairy).

For more on the low FODMAPS diet, please refer to the Stanford Digestive Health Center Nutrition Services website.

At this point my GI symptoms are under control on a gluten free, soy free, sulfite light, and “modified” paleo diet, so I am not going to adopt a strict low FODMAPs diet, nor any other I.B.S. treatments, unless I develop symptoms that warrant it. However, reviewing I.B.S. has reminded me that my periodic episodes of digestive discomfort may actually be due to I.B.S. symptoms as opposed to “glutenings.” I spent a lot of time during my first year after diagnosis trying to figure out why I kept getting “glutened” by GF foods, such as soy flour, Gatorade, lentils, and cranberries. Looking back, I was likely having I.B.S. type symptoms from FODMAPs. Also, it is entirely possible that the GI discomfort that I experience from ingredients such as xanthan gum and carrageenan may be due to I.B.S. as well (as opposed to Celiac Disease).

A dual diagnosis of I.B.S. and Celiac Disease may well explain why many of us have multiple food intolerances, symptoms of leaky gut, and/or better responses to probiotics than others with Celiac Disease. Is I.B.S. a manifestation of an innate immune response to both gluten and other food proteins in some of us with Celiac Disease? Is it I.B.S. that actually causes a leaky gut in some of us or is it a leaky gut which causes I.B.S. symptoms? I hope that we will someday have answers. In the meantime, I hope that we can all find the best diets for our individual needs and intolerances without having to go too crazy or jumping through too many hoops.

Happy Spring to all of you!

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Let’s Talk about Celiac Disease and Infertility

One of my favorite Celiac Disease-related pages on Facebook is that of the University of Chicago’s Celiac Disease Center. One of the first “tidbits” that I read on this page, after discovering it last fall, was the following statement: “Women who have experienced persistent miscarriages or infertility without a known medical cause should be tested for celiac disease.” I had no idea that there was such a strong association between Celiac Disease and infertility until I read this sentence.

I have encountered tons of women, both professionally and personally, who have struggled to get pregnant and/or carry a pregnancy to term. Recent estimates have shown that up to 10.9% of women of childbearing age (15-44) in the U.S. seek treatment for infertility in any given year. I wrote a post about the effects of Celiac Disease on pregnancy in January 2013, and since then have read quite a bit more about topic. Here are some things which I have learned about Celiac Disease and infertility:

-Studies published within the last two years have shown that between 6 and 10% of women with unexplained infertility have (undiagnosed) Celiac Disease. Previously, it was believed that the numbers were much lower, around 2-4%.

-Many women with Celiac-related infertility do have a prior history of irritable bowel syndrome or other GI complaints, but they do not necessarily have these symptoms while undergoing treatment for infertility.  It is well known that signs and symptoms of Celiac Disease can appear and then disappear for years (and even decades) before diagnosis.

-It is believed that Celiac impacts fertility due to a combination of malnutrition (nutrient deficiencies interfere with sex hormone function) and the formation of small placental blood clots (thromboses) due to Vitamin B12 deficiency. It has also been shown that anti-TTG antibodies do bind to placental tissues and can interfere with placental formation and function.

-If a woman has infertility due to Celiac Disease, fertility should resume between 3 to 9 months after going gluten free.

-Many researchers conclude that all women with unexplained infertility should be screened for Celiac Disease. Based on discussions with several people, this does not seem to be happening in all parts of the U.S.

The average cost for one cycle of IVF is $12,400. Many women go through multiple rounds of IVF before conceiving. Surrogacy can cost up to $100,000. If the research studies are correct, many women who are paying for these expensive treatments may actually have undiagnosed Celiac Disease. We need to continue to inform and discuss this with our families, friends, and neighbors as so many are potentially impacted.

General infertility statistics are found on the CDC site: http://www.cdc.gov/nchs/fastats/fertile.htm.

Other references which may be of interest:

1. Undiagnosed celiac disease in women with infertility. Machado AP, Silva LR, Zausner B, Oliveira Jde A, Diniz DR, de Oliveira J. J Reprod Med. 2013 Jan-Feb; 58(1-2):61-6

2. Increased prevalence of celiac disease in patients with unexplained infertility in the United States. Choi JM, Lebwohl B, Wang J, Lee SK, Murray JA, Sauer MV, Green PH. J Reprod Med. 2011 May-Jun; 56(5-6):199-203.

3. Immediate effect on fertility of a gluten-free diet in women with untreated coeliac disease. Raffaella Nenna, Maurizio Mennini, Laura Petrarca, Margherita Bonamico. Gut 2011;60:1023-1024.

4. Anti-tissue transglutaminase antibodies from celiac patients are responsible for trophoblast damage via apoptosis in vitro. Di Simone N, Silano M, Castellani R, Di Nicuolo F, D’Alessio MC, Franceschi F, Tritarelli A, Leone AM, Tersigni C, Gasbarrini G, Silveri NG, Caruso A, Gasbarrini A. Am J Gastroenterol. 2010 Oct; 105(10):2254-61.

5. Infertility Treatment in a Population-Based Sample: 2004–2005. Sara E. Simonsen, Laurie Baksh, Joseph B. Stanford. Maternal and Child Health Journal. May 2012, Volume 16, Issue 4, pp 877-886.

Eosinophilic Esophagitis and Celiac Disease

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Eosinophilic Esophagitis, also known as “EE,” is gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE disease when I was in my pediatric residency.  I worked with a Pediatric GI specialist who seemed to diagnose all of his infant patients with gastroesophageal reflux (GERD) with EE. When I learned about EE I had no idea that my dear husband had the very same problem!

My husband was diagnosed with EE in 2009 after having several episodes of choking and feeling like he had food stuck in his throat. In usual wife fashion I recommended over and over again (looking back, perhaps I nagged a little bit) that he get evaluated for his swallowing problems. He finally saw a GI doc following an ED visit for a choking episode, and had an upper endoscopy with biopsy performed that showed numerous eosinophils in his esophagus.

Eosinophils are white blood cells that are usually involved in allergic reactions. Although doctors are not exactly sure what causes EE, it is believed that food allergies/intolerances play a role. Both adults and children can be affected by EE, but the symptoms are different in these two groups. In adults EE leads to symptoms of difficulty swallowing (feeling like food is stuck in the throat), chest and/or abdominal pain, and heartburn. Infants and small children who are affected may refuse to eat, develop failure to thrive, and suffer from abdominal pain and/or nausea and vomiting. Some babies who are diagnosed and treated for “reflux” by their pediatricians may actually have EE.

Most patients with EE are referred for food allergy testing. If there are food allergies, avoiding the food “triggers” often helps their EE symptoms to improve. Infants and toddlers with EE may need to be put on a hypoallergenic formula, such as Neocate, to avoid allergic triggers. Other treatments for EE include proton pump inhibitors (PPIs), which are a type of anti-reflux medication, and swallowed inhaled steroids (such as Flovent) to decrease inflammation in the esophagus.

My husband’s GI doctor tested him for Celiac Disease, as, in his experience, he has encountered many patients who have both Celiac Disease and Eosinophilic Esophagitis. Although my husband does not have Celiac Disease, he carries one of the main Celiac genes, and he has found that his EE symptoms have markedly improved since going on a gluten free diet. I find this to be very fascinating as it makes me suspect he may be gluten sensitive to some degree.

Dr. Peter Green from Columbia University, one of the nation’s leading experts in Celiac Disease research, published a study showing a clear link between Celiac Disease and EE in 2012. In his paper (see link), both children and adults with Celiac Disease are at a much higher risk of also having EE. There have been a handful of smaller studies also showing an association between the two disorders, but, like with much research related to Celiac Disease and gluten-related disorders, more work needs to be done.

For additional information I recommend the American College of Allergy, Asthma & Immunology (ACAAI) page on Eosinophilic Esophagitis.

The Effects of Gluten on the Brain and Nervous System

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Most of the articles about gluten and celiac disease I’ve came across in the media have focused on symptoms related to digestion, such as abdominal pain and bloating after eating gluten, and damage to the small intestine. The bulk of the gluten-related discussions on the celiac forums I’ve perused concern questions and answers regarding the diagnosis of celiac disease and tips for following the gluten free diet. There have been several papers published over the last few years about the neurologic effects of gluten exposure for those with celiac disease and non-celiac gluten sensitivity. I do not believe that they have gotten the attention that they deserve in the media or on the forums. I am especially interested in this area as over the last few months I have developed a peripheral neuropathy (nerve damage) related to having celiac disease.

Dr. Hadjivassiliou is one of the leading researchers on neurologic problems related to gluten exposure. Although I have no idea how to pronounce his name, I can tell you that he is on faculty in the Department of Neurology at Royal Hallamshire Hospital in Sheffield, United Kingdom. My favorite paper of Dr. Hadjivassiliou’s is a review article titled, “Gluten sensitivity: from gut to brain,” which was published in the Lancet, a major medical journal, in 2010. In this paper, gluten sensitivity refers to both celiac disease and non-celiac gluten sensitivity. Some of the key points of this paper include the following:

• Most patients with neurologic symptoms related to gluten do not have gastrointestinal symptoms.

• Ataxia (a problem with balance and coordination) and peripheral neuropathy (nerve damage) are the most common neurologic symptoms related to gluten. Up to 25% of celiac patients on a gluten free diet will develop a peripheral neuropathy at some point.

• Patients with neurologic symptoms often have celiac “autoantibodies” on blood testing, usually anti-gliadin (AGA) antibodies and/or tissue transglutaminase (TTG) antibodies. Many patients with these antibodies have non-celiac gluten sensitivity, meaning that they have high celiac antibody levels and symptoms, but no evidence of villous blunting (seen in celiac disease) on small bowel biopsy.

• The average age of onset of gluten ataxia is 53 years and for the gluten-related peripheral neuropathy is 55 years.

• Brain MRI findings can include cerebellar atrophy (loss of volume) and/or white matter lesions which may mimic those seen in multiple sclerosis.

• Neurologic symptoms often improve on a strict gluten free diet but may never resolve completely.

Gluten sensitivity has also been associated with seizures, dementia, and migraines. Obviously, further research on the effects of gluten on the brain and nervous system is needed. I’ve came across many people on the celiac forums who have psychiatric symptoms related to gluten exposure as well, although this has not been well-studied.

It seems especially frightening that many people who develop neurologic problems, like me, do so when they are already on the gluten free diet. This is a reminder that even small traces of gluten can cause serious damage to those of us who are gluten sensitive. If you have any family members or friends who develop ataxia or a peripheral neuropathy of an unknown cause, I urge you to recommend an evaluation for celiac disease and non-celiac gluten sensitivity.

For further reading on the this topic I would suggest the following links:

1. “Brain Abnormalities Common in Celiac Disease Patients,” by P. Harrison, published in Medscape Neurology News on September 10, 2012.

2. Dr. Hadjivassiliou’s Lancet Neurology article, “Gluten Sensitivity: From Gut to Brain,” published in March 2010.

3. Living Without Magazine article, “Gluten Attack: Ataxia,” found in the Feb/Mar 2011 issue.