The Patient Celiac

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.

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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.