jebby

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. 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.
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, Open Original Shared Link, and Dr. Hornet Bupp on Open Original Shared Link.
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 Open Original Shared Link. Stephan C. Bischoff. Nature Reviews Immunology 7, 93-104, February 2007).
Open Original Shared Link
References
1. Bohn, L., et al. Open Original Shared Link 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.Open Original Shared Link.

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.
 
Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.
 
The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:
 
Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.
 
Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.
 
Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.
 
17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.
 
 
It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!
 
Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

As many of us already know, there are some celiacs who are “refractory” and continue to have ongoing symptoms after going gluten free. In addition, there are a bunch of us who are “super sensitive” in terms of reactions to gluten cross-contamination. I am one of the super sensitives. Not too long ago I had a reaction from eating one bite of a Trader Joe’s “no gluten ingredients” brownie which I had prepared in my own gluten free kitchen for a potluck.
 
Just last week, Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free. Steroids are currently the standard of care for treating NRCD, which as we know can have serious side effects.
 
The researchers coined their diet the “Gluten Contamination Elimination Diet.” Here is the breakdown of foods with are allowed and prohibited on this diet:
 
Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.
 
Not allowed: millet, sorghum, buckwheat or any other grains, seeds, or flours; frozen, canned, or dried fruits and vegetables; lunch meats; ham; bacon; seasoned or flavored dairy products; processed cheeses; flavored and malt vinegars.
 
Basically, all processed foods are eliminated. Of note, dairy is not reintroduced until week 4 of the diet.
 
17 patients with NRCD, all female, were placed on this diet for an average of 3-6 months. 14 of the 17 (82%) significantly improved on the Gluten Contamination Elimination Diet. Of those who did have biopsies performed after the diet, all but one had resolution of their villous atrophy. This is important information as there have been a lot of recent studies showing that persistent villous atrophy is common in celiac disease. Most of the patients in this study were able to eventually resume a “traditional” gluten free diet.
 
 
It has taken me over 3 years, and a lot of trial and error, to figure out the foods which my body loves and hates. Interestingly enough, my body’s food preferences are almost identical to the foods on the “allowed” list in this diet. Had I known about this diet, and adhered to it when I was first diagnosed, it would have saved me a ton of pain and anguish. I am optimistic that this diet (or a similar version) will become the standard of care for those newly diagnosed with Celiac Disease, and I hope that this happens sooner than later. If we work together, we can get the word out!
 
Reference: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.” BMC Gastroenterology. 2013. 13:40 (e-pub).

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.
 
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!

Although I am pretty sure that I had Celiac Disease for more than two decades before my diagnosis, I was not diagnosed until after my 3rd child was born. Looking back, my diet during my first 3 pregnancies was a gluten-filled nightmare. I am actually glad that I have no idea how sky-high my celiac antibodies probably were while I was pregnant with my oldest kids.
 
There has not been a ton of research on celiac disease and pregnancy, but based on the work that has been done, I have learned that celiac disease has effects on fertility, miscarriage rates, fetal growth, and the ability to carry a pregnancy to term.
 
Celiac disease is associated with early menopause, endometriosis, irregular menstrual cycles, and amenorrhea (missed periods), similar to what is seen in many other autoimmune diseases.
 
Between 4 to 8% of unexplained infertility is due to undiagnosed celiac disease. Many celiacs with infertility as their main problem do not have the “classic” digestive symptoms that would normally lead to diagnosis.
 
Once pregnant, women with undiagnosed celiac disease have between a 2-4x higher risk of miscarriage than women who do not.
 
During pregnancy, women with untreated celiac disease are at a higher risk of anemia, preterm labor, stillbirth, and having infants with low birth weights (growth restriction). These problems are related to a combination of maternal nutrient deficiencies during pregnancy, as well as effects from the attack of the placenta by maternal auto antibodies (TTG).
 
As a part of taking care of premature babies, it is important for me to review the medical and obstetric histories of my patients’ mothers. I have come across women more times than I can keep track of who, upon review of their medical records, may have celiac disease (some combination of irritable bowel syndrome, anemia, thyroid disease, depression, infertility, diabetes, and/or asthma). I have a friend who did a small research study during her fellowship in which she evaluated the mothers of low birth weight babies for celiac disease. Through her study, one mother was diagnosed with celiac disease. Similar research has recently been conducted in Italy, with results mirroring my friend’s.
 
Based on the information on the University of Chicago Celiac Disease Center website, once a woman is diagnosed with celiac disease and on a strict gluten free diet, fertility should return. Experts have recommended waiting between 6 months to 2 years once being gluten free before trying to conceive, in order to give the body time to heal. It is essential for celiacs to be on appropriate vitamin and mineral supplementation while pregnant.
 
It is assumed that pregnancy outcomes for women with treated celiac disease are similar to those of women without it. The only exception is that celiacs are still at a higher risk of miscarriage, even when we are gluten free during pregnancy. I have personally experienced this; back in 2011 I miscarried within days of bad “glutening” episode.
 
In summary, women with unexplained infertility should be screened for celiac disease. Once diagnosed, it is important to remain strictly gluten free and take a good gluten free prenatal vitamin while pregnant. One of the best resources to check the gluten status of a medication is at www.glutenfreedrugs.com. Last of all, try not to worry about the effects of celiac disease on your baby! Treated maternal celiac disease has no association with birth defects, heart problems, cerebral palsy, etc. However, if you are like me, you will worry about your baby throughout your entire pregnancy…this is a totally normal part of being a mom!
 
For additional reading on celiac disease and pregnancy, I recommend the following links:
 
1. The National Foundation for Celiac Awareness’ 2009 article “Open Original Shared Link.”
 
2. “Open Original Shared Link” by Shah, S (2010).

There is a well-established relationship between celiac disease (and non-celiac gluten sensitivity) and the development of neurologic problems in adults. According to Dr. Marios Hadjivassiliou, a neurologist in the UK who is one of the world’s experts in this area, up to 50% of adults with newly diagnosed celiac disease have signs or symptoms of neurological problems. I have personally experienced a peripheral neuropathy (nerve damage) as a result of celiac disease and it was my neuropathy that prompted me to start writing about my experiences in 2012. If you are interested in learning more about gluten-related neurologic problems in adults, I urge you to read Christine Boyd’s article “Gluten and Your Brain” in the April/May 2014 issue of Living Without Magazine. The article contains a wealth of information from experts, including Drs. Fasano and Hadjivassiliou.
Although there is definitely a link between gluten-related disorders and nerve and brain problems in adults, much less in known about the neurologic signs and symptoms in children with gluten sensitivity. This may be in part due to a 2008 paper in the Journal of Pediatrics that concluded that neurologic problems in children with celiac disease are rare. I have personally interacted with many parents of children with both celiac disease and non-celiac gluten sensitivity who have had their children’s neurologic and behavioral symptoms improve on the gluten-free diet. In addition, in just the last few weeks, there have been several published case reports regarding gluten-induced neurologic problems in kids. If you are interested in learning about the case reports, I have summarized them below:
The 1st case report is of a 15 year old girl with celiac disease who developed a peripheral neuropathy out of the blue that consisted of weakness and a pricking sensation in her legs. It was discovered that she had been accidentally eating biscuits that contained gluten for about 2 months prior to the neuropathy starting. Her neuropathic symptoms resolved when she stopped eating the non-gluten-free biscuits (see reference #3).
The 2nd case report is of a 3 year old girl who developed an acute disseminated encephalomyelitis (brain inflammation) and white matter lesions that were visible on her brain MRI. After going on the gluten-free diet her neurological symptoms resolved and the white matter lesions stopped growing in size (see reference #4).
The 3rd case report is of a 2 year old boy with epilepsy who continued to have seizures despite being on multiple seizure medications. He did not have any digestive symptoms, outside of canker sores in his mouth, but was found to carry one of the 2 main celiac genes (HLA-DQ8). Within 6 months of being on the gluten-free diet, his seizures improved, his EEG became normal, and he was able to be weaned off of all his seizure medications (see reference #5).

According to Dr. Guandlini, the founder and medical director of Open Original Shared Link who wrote a recent review Open Original Shared Link about celiac disease in children, neurologic signs and symptoms of celiac disease in the pediatric population can include all of the following: cerebellar ataxia, recurring headaches, peripheral neuropathy, seizures, and psychiatric disorders, including anxiety, panic attacks, and depression.
In writing and sharing this post I am not trying to state that all neurologic problems in kids are as a result of gluten, as this is clearly not the case. I am sharing this information in hopes that both celiac disease and non-celiac gluten sensitivity may be on both parents’ and doctors’ radars when neurologic signs and symptoms appear in kids, as well as to help prevent others from having a long delay in diagnosis like I did.
Thank you for reading and please feel free to share your personal experiences in the comments section.
References:
Hadjivassiliou, M, Sanders, D, Grubewald, R, et al. Gluten sensitivity: from gut to brain. The Lancet. March 2010. 9: 318-330.
Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, et al. Low prevalence of neurologic and psychiatric manifestations in children with gluten sensitivity. Open Original Shared Link 2008 Feb; 152(2):244-9.
Open Original Shared Link, Open Original Shared Link. Axonal and demyelinating polyneuropathy associated with celiac disease. Open Original Shared Link 2014 Apr 8; 51(4):311-2.
Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, et al. A pediatric case of gluten sensitivity with severe neurological presentation. Open Original Shared Link 2014 May 13. [Epub ahead of print]
Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, et al. An unusual case of drug-resistant epilepsy in a child with non-celiac gluten sensitivity. Open Original Shared Link 2014 Apr 18. pii: S1059-1311(14)00106-X. doi: 10.1016/j.seizure.2014.04.005. [Epub ahead of print]

I think most of us have met people who have symptoms of celiac disease, but when tested, are told that their celiac antibody blood tests and biopsy results are negative (normal). Some of these people are labeled “gluten intolerant” or “gluten sensitive” by their doctors, others are told they may have “early” celiac disease, or “pre” celiac disease, and the rest are told that they have nothing wrong and are often advised to continue to eat gluten. Many continue to eat gluten and find themselves getting sicker and sicker, with an improvement or disappearance of symptoms when they go gluten-free. Then, when they go gluten-free, since they are “gluten intolerant” as opposed to having celiac disease, it is unclear how closely they need to be followed for vitamin deficiencies, the development of additional autoimmune disorders, and other problems that are associated with long-standing celiac disease.
Whenever I hear that a person is “gluten intolerant” I wonder whether or not the diagnosis of celiac disease was actually missed. Celiac blood antibody testing can be unreliable in infants and toddlers, people who have a condition called serum IgA deficiency (occurs in up to 3% of celiacs), and when patients are tested after they have already started on the gluten-free diet. Likewise, endoscopies and biopsies are often done incorrectly which can lead to celiac-induced intestinal damage being missed.
I recently read, with much interest, an article called, “Intestinal-mucosa anti-transglutaminase antibody assays to test for genetic gluten intolerance,” which was published this month by a group of celiac researchers in Italy. Although it’s a bit technical, I will do my best to summarize it for you.
In this study, the gluten-intolerant subjects consisted of 78 pediatric patients who had symptoms of celiac disease but normal celiac antibodies (anti-TTG, also called TTG IgA) and normal small bowel biopsies. None of the subjects were IgA deficient. Of the 78 gluten intolerant subjects, 12 were found to have anti-TTG antibodies present in the tissue biopsies from their intestines–to clarify, anti-TTG antibodies were found in their intestines, but not in their blood. 3 of the 12 patients in this “gluten intolerant” group, with TTG antibodies localized to the intestine only, were started on a GFD diet and they all had improvement in symptoms and anemia after 24 months on the gluten-free diet. Of the 9 patients with anti-TTG antibodies in the intestines who were continued on a gluten-containing diet, 2 of the 12 had celiac disease at 24 month follow-up. The remaining 7 “gluten intolerant” subjects who remained on gluten-containing diets appeared to have an improvement in symptoms at the 24 month mark, but it is unclear if this reflected a period of remission v. a true resolution of the intestinal antibody response, as there has been no long term follow-up, and as far as I can tell, biopsies were not repeated.
Although this study has a very small sample size, it demonstrates that there are some “gluten intolerant” patients who actually have subclinical celiac disease. In these cases, the celiac immune response is contained to the intestines only and villous atrophy (the hallmark of celiac disease) has not yet occurred. It appears that these individuals benefit from treatment with the gluten free diet.
I am curious to see if the long-term follow-up of the remaining 7 gluten intolerant subjects will be published in the future, and if some of them will also go on the develop celiac disease. I am also curious to see if celiac antibody testing of intestinal biopsy specimens will eventually become part of the standard of care in the clinical investigation of celiac disease.
Reference:
Quaglia, S, De Leo, L, Ziberna, F, et al. Open Original Shared Link. Cellular and Molecular Immunology advance online publication, 28 April 2014; doi:10.1038/cmi.2014.32.

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.
 
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!

**This is the first guest post on my page by Cristen, an incredibly talented scientist and mother of two children. Her youngest child was diagnosed with Celiac disease earlier this year. Many thanks to Cristen for tackling this challenging topic!
Celiac is known to have a large genetic component and people with Celiac disease carry the HLA-DQ2 or HLA-DQ8 genes. However, only around 4% of people that carry these genes develop Celiac (Open Original Shared Link). The big question then is, what else is contributing to the development of Celiac?
Scientists are currently looking at other candidate genes, and so far, seven additional genes that make individuals more susceptible to developing Celiac have been identified. Genes are a great place to start, but as we all know, gluten is the big culprit in Celiac. It is the known environmental “trigger” for Celiac. Why is it that some people that carry the “Celiac genes” develop the disease after gluten exposure while others don’t?
Scientists and doctors are asking this question a lot these day. One area that is being investigated is infant feeding. Studies looking back on the Swedish Celiac epidemic of the 1980-1990s have shown that more than half of the epidemic could be explained by infant feeding practices (Open Original Shared Link). During the time of the epidemic, Swedish infants were being introduced to gluten, on average, at around five months of age. Breastfeeding ended around this time and was replaced with formula thickened with wheat flour. When breastfeeding averages extended toward seven months and the popularity of wheat-laden formulas decreased, so did the rates of Celiac.
The Swedish epidemic got researchers thinking about infant feeding and many studies have since been published showing an effect of the age of gluten introduction, the amount of gluten introduced, and breast feeding on Celiac development.
A new study looking at the effect of these factors on the development of Celiac was recently published in the journal Pediatrics (Open Original Shared Link). This study, out of Norway, looked at the early feeding practices in 324 children that developed Celiac disease compared to a cohort with 81,843 children that did not develop the disease. The strength of the study is that it was prospective. Unlike most population studies where parents have to look back in time and remember details of early milestones, in a prospective study, parents fill out surveys to provide information in real time.
So what did this most recent study find? The authors found that 3.68/1000 children developed Celiac when introduced to gluten at six months compared to 4.24/1000 when introduced at four months and 4.15/1000 after six months. The increased risk for Celiac disease when gluten is introduced before four months, or after six, has been previously observed (Open Original Shared Link).
In this new study, the average length of breastfeeding in children that developed Celiac was 10.4 months compared to 9.9 months in the control population. The researchers found a positive association of prolonged (greater than 12 months) breastfeeding and the development of Celiac disease. When all their breastfeeding data was adjusted for confounding factors such as maternal Celiac disease, this increased risk was borderline significant. That means that statistically speaking, the data set is on the weaker side and needs to be interpreted with caution. However, it does still demonstrate that in this data set, children that were nursed for twelve months or more had a greater risk for developing Celiac.
These findings have been met with frustration by many mothers of children with Celiac. Are women responsible for the development of their child’s Celiac disease because they chose to hold off solid foods and nurse up to, or past, one year? Of course they aren’t, and the authors of this study are not saying that they are. In their discussion, the authors caution that while their data on age of gluten introduction closely matches data from earlier studies, their data on breastfeeding does not.
Many, if not all, previous studies looking at breastfeeding and Celiac disease have found a protective effect from nursing. A 2006 review of the literature found that breastfeeding at the time of gluten introduction provided a 52% reduction in the development of Celiac disease (Open Original Shared Link). In 2005, two Swedish studies found a significant reduction in the onset of Celiac in babies that were nursed at the time of gluten introduction and continued to be nursed after that first introduction (Open Original Shared Link).
This latest study found that breastfeeding did not protect against Celiac and that nursing past twelve months increased the risk. Sounds strange right? In their discussion, the authors hypothesize that the greater risk in those breastfed past 12 months may have more to do with gluten than with breast milk. When a child is breastfed longer, the introduction of gluten may be later, after six months of age. Furthermore, since the child is older at gluten introduction, he may be exposed to larger amounts. The authors also mention that some mothers may have nursed longer due to perceived food sensitivities.
In the end, what is the take away from this study, and others, looking at infant feeding and the development of Celiac? It seems that there may be a window for gluten introduction between 5-6 months. Introduction before and after this time seem to increase the risk of Celiac. As far as breastfeeding, most studies point toward a large protective effect.
The development of Celiac Disease seems to be a perfect storm of genetic and environmental factors. Factors that may be out of any one person’s control. Studies should continue to look at early infant feeding and disease development, but all data should also be interpreted knowing that as hard as we try, some times, some things just can’t be prevented.

Yes, this is a real diagnosis, and it effects between 6 to 8% of our population, or approximately 18 million people. Many doctors and patients are unaware that it exists. Most of the papers on this topic have only been published in the last 2-3 years. The British Medical Journal published a case study and review of gluten sensitivity in their November 30, 2012 edition. It is the first case study I have come across in a major medical journal in which a patient self-diagnoses based on information which he found on the internet. The review article gives a good overview of our current understanding of this disorder.
 
Gluten sensitivity is a catchall term for a bodily reaction to eating gluten. It is not a food allergy, and the autoimmune process differs from celiac disease in that there is not destruction of the villi of the small intestine. People with gluten sensitivity may experience any of the following symptoms after eating gluten:
 
1. Gastrointestinal symptoms like diarrhea, abdominal pain, constipation, and/or “irritable bowel syndrome.”
 
2. Fatigue, depression, or difficulty concentrating. Feeling like one has a “foggy brain.”
 
3. Joint pains, stiffness, and/or leg numbness and tingling.
 
Anemia and osteoporosis have also been associated with gluten sensitivity. Some recent work has also shown neurologic problems, such as ataxia and peripheral neuropathy, in gluten-sensitive individuals.
 
Many of these symptoms overlap with celiac disease, but patients with gluten sensitivity do not meet the diagnostic criteria for celiac disease. Some may not have either of the two major celiac genes (HLA-DQ2 or DQ8), some may not have abnormal celiac antibodies, and most have normal, or almost normal, small bowel biopsies.
 
There are no tests for gluten sensitivity. Once celiac disease has been ruled out, if your symptoms go away when you stop eating gluten, and they return when you start eating gluten again, then you know that you are “sensitive” to it. You can diagnosis yourself.
 
We do not yet have information on the long-term effects of continuing to eat gluten if you have a gluten sensitivity. In this recent article, Dr. Fasano, one of the leaders in celiac disease research, states that he doesn’t believe that there are long term effects on health if you choose to do this.
 
I am a bit uncomfortable with this, as just a few decades ago it was believed that patients could “outgrow” celiac disease. The bottom line is that if a food makes you feel terrible, don’t eat it! You can definitely survive and live a full life without gluten-containing cupcakes, pizza, pancakes, etc. My fellow Celiacs and I are proof of this and we can help you on this journey.
 
For additional reading on this subject I would suggest Melinda Beck’s article, “Clues to Gluten Sensitivity,” published in the March 15, 2011, Wall Street Journal Health Journal. There is also some helpful information about gluten sensitivity on the website www.celiaccenter.org.

I’ve realized that I have not written for almost a week and I think I am okay with this. When I started this blog two months ago, I anticipated being able to post about once a week, so I think I am on track. Between working full-time, running, and trying to squeeze in some sleep, the main reason that I have not had time is that I have four small children. I am trying my best to cherish this phase of our family life, as I know that someday I will have four teenagers at once!
 
None of my kids have Celiac Disease, but I consider them all to be at high risk for its development. Although I was diagnosed when I was 33, I have probably had Celiac Disease since early childhood. My mother also has it, and interestingly enough, was diagnosed after I was. Through conversations with aunts and uncles, it seems there is some “gluten sensitivity” in my deceased dad’s family. Although my husband, Tom, does not have Celiac, we do know that he is HLA-DQ2 positive, as he was tested by his GI doctor. He has both an aunt and cousin with Celiac Disease as well. If none of my children go on to develop Celiac Disease, I will be truly amazed!
 
We started off my Celiac journey with a shared kitchen. I read up on this as much as I could after diagnosis, and I had my own “gluten free” cabinet, pasta strainer and pasta pot, cooking utensils, baking dish, etc. I also kept separate gluten-free butter, peanut butter, and other condiments to avoid cross contamination. I always put my items on a piece of aluminum foil when toasting because I was never able to find the “toaster bags” which people would discuss on the Internet forums. I thought that I was doing everything right and although our gluten-free/non gluten-free set-up did work for a while, I kept on getting sick. In 2012 I developed a peripheral neuropathy, which is persistent numbness and tingling from nerve inflammation, and was evaluated for multiple sclerosis. My neuropathy ended up being Celiac Disease related, as a result of continued exposure to traces of gluten. We made our whole home gluten free in 2012 and I have had minimal problems since then. My exposure to tiny hands and mouths with gluten crumbs was much more damaging than I could ever have imagined when I was diagnosed in 2010.
 
Through starting this blog I have been able to interact with a lot of moms with Celiac Disease and/or raising kids with Celiac Disease. Many of us have decided to raise all of our kids gluten free, however, this seems to be controversial. I have learned that many people are being advised by their doctors that it is not “safe” to raise their non Celiac children gluten free, because they are being told that by doing so that they are depriving their kids of essential vitamins and nutrients. I have researched this and have not found any evidence that this is the case, as long as gluten free kids are given a wide variety of non-processed, nutrient-rich foods.
 
Our youngest is now 10 months old and, freakishly enough, has 7 teeth, so she is eating table foods at dinner. We eat a lot of vegetables, fruits, meats, eggs, beans, and fish. Our “starches” consist of potatoes, rice and risotto, squash, and sweet potatoes. Once a week or so we will make a gluten-free pizza of some sort. Lately we have been making a cauliflower pizza crust which I adapted from a recipe I found on Pinterest (I will post it on the “Recipes” page of this blog soon). We occasionally make tacos, enchiladas and other Mexican foods, pasta or lasagna, and Indian dishes, usually a chicken curry of some sort. For snacks our kids eat fresh fruit, applesauce, popcorn, dried fruits and nuts, yogurt, string cheese, gluten-free crackers and rice cakes. We always have a few “treats” in our home, usually Annie’s gluten-free Bunny crackers, ice cream, and a tortilla chip of some sort. I bake a lot of treats for the kids as well. We’ve made delicious chocolate chunk cookies using almond flour 2 or 3 times in the past week (see link). We’ve said goodbye to a lot of convenience foods like chicken nuggets and frozen macaroni and cheese.
 
I do not see any evidence that my children are nutritionally deprived. They are growing and thriving, are not anemic, and interestingly enough, my two oldest have grown quite a bit since going off of gluten last year. I give all of them a calcium and vitamin D supplement once a day, but I have done this for years. We live in the midwest, where vitamin D deficiency is rampant in both kids and adults, and a deficiency is associated with the development of autoimmune diseases. I have not given them any other vitamins or supplements. I am pretty certain that they are getting enough protein, fat, vitamins, minerals and calories for proper growth and development through their diets.
 
I am not trying to say that what I am doing for my family is right or best for all families. I am sharing my story in hopes that it may help others to make the decision whether or not to make their entire household gluten free. Looking back, I wish that I would have made the transition much earlier in my journey, as it would likely have prevented me from developing neurologic complications from Celiac Disease. Thank you for reading!

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:
 
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.

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:
 
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.

Eosinophilic Esophagitis, also known as “EE,” is a gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE 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. While I was learning about EE I had no idea that my dear husband had the very same disease!
 
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.