Familial Mediterranean Fever community

Familial Mediterranean Fever (FMF) is a hereditary autoinflammatory disorder.

No Colchicine, No GLUTEN, No FMF Attacks.

Written by Jsapriel, published about 1 year ago.

I am 57 years old, and have two known FMF Gene mutations, I have been off Colchicine for the past 10 to 12 years. Since I stopped eating GLUTEN, I have one to one and half mild to very mild FMF attacks per year. FYI: I am in better physical shape than my two twenty something years old sons...

I was born in 1953 in Morocco. I am now 57. I grew up and lived near and around Strasbourg, in the Northeast of France until 1984 which is when I moved to the United States. Both my parents are Sephardic Jews. My mother was born in Morocco from a family with a long presence in Morocco and my father was born in Egypt. Some genealogical research I did showed that my father’s family actually originated from present day Algeria.

I was diagnosed with FMF for the first time at the age of one. As a toddler shortly after my initial FMF flares, while still living in Morocco, I had exploratory abdominal surgery that resulted in the removal of my appendix. I was re-diagnosed 4 or 5 times after the initial diagnosis. One of the subsequent re-diagnosis occurred while I was drafted in the French military. The FMF diagnosis enabled me to be discharged for medical reasons from the French military.

Characteristics of my FMF flares:
From 1 to 16 years of age: about 10 FMF flares/year. Typical symptoms included: severe cramps, vomiting, high fever, diarrhea, minor articulation pains and pleurisy. The worse part of the FMF flare would last 3 days. Total recovery would occur over a week. I would typically be out of school for one to three days. My typical diet during a flare would be fasting with just tea and/or bouillon for food.

From about 17-18 years old to the year 2001, I typically would have between 4 to 6 flares/year. Typical symptoms included: severe cramps, no vomiting, high fever, diarrhea, minor articulation pains, pleurisy.

By the time I reached my teenage years, I had developed a constant monitoring system that would check the state of my digestive track for the slightest early signs of an FMF Flare. As soon as I would detect an early FMF symptom, I immediately radically change my behavior and my diet to get ready for the flare. From the time I reached college, I made consistent efforts to be physically active.

Today, by most measurements, I am in better shape than most healthy males in my age group and often in better shape than males much younger than I am. In 1976, while on an internship in Germany, I met a Russian doctor who had worked at Hadassah Hospital in Jerusalem and who informed me that Dr. Micha Levy had successfully been using Colchicine to treat FMF. During the following 3 years, I took 0.5 mg of Colchicine daily.

My episodes were still occurring; however their intensity and duration was much lessen. After a few years on colchicine, I decided to only take colchicine at the onset of an FMF flare (2 * 0.5 mg every 4 hours - 3 times in a day) to derail the flare which I usually managed to lessen using this form of treatment.

About 4 years ago, I was included in Dr. Kastner’s clinical study of FMF cases @NIH near Washington DC. The genetic testing administered by Dr. Kastner found that I have 2 out of 4 of the FMF genetic mutations he has identified. In 2001, by pure coincidence I realized that I was Gluten sensitive. For a few months I experimented with my diet to realize that abstaining from Gluten would enable me to avoid feeling a particular kind of tiredness ("spacey") that hampered most of my afternoon hours.

For years I had spend my afternoon in a half awake/half asleep state which hampered various aspects of my life and is not a productive mental state considering that I have a very brain intensive job (I work in IT).
In 2001, shortly after I went on a gluten free diet, the intensity and frequency of my FMF Flares decreased to about 1 to 2 medium to mild flares in a year. FMF patients are typically very sensitive to stress. At the time that I went on a gluten free diet, I was divorcing and unemployed. It was probably the most stressful time of my life and my FMF flares decreased in intensity and frequency.

At the time of this writing, I had not had a full blown FMF flare in the past 2 years, not even a mild one.
However, I am not totally free of FMF symptoms: once in a while I still have very mild FMF symptoms such as mild pains in the articulations or unexplained sleeplessness.
As soon as I absorb Gluten, even small amounts of Gluten, my digestive track slows down to a crawl, I feel tired and bloated, I feel strange skin sensations, etc...

It is very obvious to me that, in my case, Gluten acts as a trigger inflammatory agent. However, for some reason, a full FMF flare does not occur until a certain threshold is reached. It looks like Gluten caused inflammation follows a cumulative pattern before manifesting itself as a full blown FMF episode. In collaboration with Dr. Janine Jeager from the University of Virginia, we have identified 9 cases of FMF patients whose health improved when going on a Gluten free diet.

I am not suggesting that the health of all FMF patients who improve if they went on a Gluten Free diet.

I am suggesting that some FMF patients could entirely free themselves of the most painful and undesirable symptoms of FMF by going on a Gluten Free diet.

I suggest that a Gluten free diet is a worth while experiment to try for at least one to three months to determine if it has a positive impact on the FMF flares.

Written by Jsapriel, published about 1 year ago.

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