Gluten free. Gluten intolerance. Allergic to gluten. Lately it seems almost everyone is trying to avoid gluten. Health reasons. Feel better. Bloating less. Lost 10 pounds. Healthier lifestyle. We weren't meant to eat so much wheat.
So how and why after 14 years of maintaining a 100% gluten free lifestyle is the gluten free boy being intentionally and methodically exposed to very small and increasing amounts of gluten?
The why is because he has a life-threatening allergy to wheat, barley, rye and oats - which was discovered when he was 8 months old. Over the past 14 years he has experienced a dozen life threatening accidental exposures to gluten- a result of cross contamination. The few restaurants we visit are vigilant, and he has never had a problem at a restaurant-- until one day last summer he did. It takes one tiny mistake on the cooking line or manufacturing plant to cause a allergic reaction.
We convinced ourselves that we had 100% control over what the
gluten free boy ate- until one day last August we didn't. The allergic
reaction came quickly and without warning. We came to realize that dining out with an anaphylactic food allergy is Russian roulette (thanks to Kim for this insight:)
The how is the most exciting part. A serendipitous conversation with another food allergy parent lead us to Dr. Kari Nadeau at Stanford's Alliance for Food Allergy Research (SAFAR). I had no desire to join the conference call with Dr. Nadeau because there was never anything new relating to wheat/gluten in the field of food allergy research. My husband began the call with Dr. Nadeau- texting me repeatedly urging me to join. After his 6th text request- I joined the call. What I heard from the doctor was surreal- it sounded too good to be true.
Thru an FDA approved Phase 1 food allergy study Dr. Nadeau uses the asthma drug Omalizumab (Xolair) along with oral immunotherapy (OIT) in hopes of curing multiple food allergy. After ten weeks and five injections of Xolair the doctor and her team introduce small amounts of the allergen in the form of oral immunotherapy (OIT), ultimately bringing patients to a level of safety from cross contamination. The goal is to reach 4000 milligrams of each allergen, which is graduation from the program.
Dr. Nadeau connected us with several parents whose children participated in the study. They all told similar stories- anaphylactic, multiple food allergies, this study is the first glimmer of hope. The combination of Xolair and the OIT WAS WORKING.
To qualify for this food allergy study the subject must meet certain criteria:
1. Blood is drawn testing total IGE levels. His total IGE was 552, which qualified him for the study.
2. Skin prick tests were given to prove and document skin sensitivity. The welts for his allergens were all over 10 mm.
3. Spirometer to test lung capacity. His lung capacity was fine because he is not asthmatic- this is a benchmark.
4. The doctor has to prove the subject is truly allergic before proceeding. The double blind placebo controlled food challenge was administered. Matthew was given mystery flour of either placebo which was rice; oat, wheat, barley or rye mixed into small containers of chocolate pudding. We knew the wheat, oat or barley challenges would come eventually we just weren’t sure when.
On the first day the nurse started at 8:50 am with a dose of 0.1mg of mystery flour and mixed it with pudding. He was hooked up to blood pressure and pulse oximeter machines- checking his vitals after each dose, asking about itching or any other symptoms. Every 15-30 minutes the dose was upped, vitals checked and the questions were asked. 0.1 mg- nothing. 1.6 mg -nothing. 6mg nothing. 25mg nothing. 50mg.
After biting off all my fingernails and picking off all my remaining nail polish, I decided to pick up lunch. 50 mg- nothing. I returned 30 minutes later and found my husband, Dr. Nadeau and the nurse Tina were all by his side—everyone was calm except me. He was bright red, itching, lips swollen and he was very hot. It was obvious he ate wheat all morning. His breathing was clear but the allergic reaction was very scary. After the Zyrtec and Benedryl failed to work quick enough Epi was given to alleviate the symptoms. He was observed a few more hours and we left for dinner.
After the scary double blind placebo controlled food challenge in July it was concluded that he is in fact severely allergic to gluten—the combination of his high RAST number, welts and food challenge determined he would most likely NOT grow out of his allergy.
He began the first of eight Xolair shots in August. In early October after his fifth shot he began the OIT. Over a seven-hour period again hooked up to blood pressure and pulse oximeter machines- along with planned, frequent visits from nurses/doctors, he was given increasing doses- approximately1000milligrams (!)- of wheat, oat, barley and rye mixed into creamy chocolate pudding. Upon reaching approx. 1000mg he did have a reaction. It was considered relatively mild- no epi pen was needed but he did need Zyrtec, Benedryl, nasal inhaler and eye drops. His reaction was like a very bad cold. (Back in July, a severe reaction occurred with cumulative 80mg of wheat only.
As of this writing he has had six Xolair shots and he is now consuming a daily dose of 625 milligrams of wheat, oat, rye and barley (equal amounts) combined- mixed into the same creamy chocolate pudding.
For now with the exception of a prescribed once daily wheat/oat/barley/rye dose, the gluten free boy must adhere to his GF diet. He continues with daily doses to maintain and build further safety from cross contamination. We are in the beginning of a long process.
According to Dr. Nadeau, the gluten free boy is now safe from some levels of cross contamination. This is a huge step. His homework from the doctor is to try new things—NOT foods containing wheat/gluten but “may contain” items and items “made in the same fryer” are ok. So far he has eaten and loved Nestlees crunch bars (the allergy label says, “May contain wheat” and he has indulged in McDonald’s fries—the first time since they changed their labeling to include, “Contains wheat.” A couple months from now, the gluten free boy hopes to try his first piece of non-GF pizza...and a mini Oreo cookie.