I'm currently dealing with Mast Cell Activation Syndrome (MCAS), Hashimoto's, and Histamine Intolerance (HIT). After more than ten years of making the rounds to various doctors and countless hours of internet research and trying various protocols to no avail, I'm on a journey back to health. To that end, I've started an elimination and provocation diet. I need to keep a diet journal, and have decided to share it here for anyone who may be on a similar path. But first, some background on what led me here.
In 2004, in the midst of an extremely stressful period in my life, I started noticing a burning itchy feeling in my arms and legs after I showered. It didn't happen every time, sometimes it was mild and brief, a few times it was so severe and so prolonged that all I could do was sit and sob. It was very painful, and not knowing what caused it made it more frustrating, because there was no way to avoid it. I changed shampoos and body wash, changed laundry detergent, put a filter on the shower, all to no avail. It made no difference.
The next year, I randomly had a reaction to soy. I had been mostly vegetarian for 15 years in the 80's and 90's and had eaten a ton of soy with no problem. Then one day in '05 I ate some soy ice cream and immediately turned bright red and started itching. Around that same time, I was having trouble with extreme fatigue. When my sister told me she had been diagnosed with low thyroid, I asked my doctor to test me. The test came back positive for Hashimoto's, and the doctor put me on a t4 supplement, but didn't discuss any other options or give me any information about the disease at all. The first couple of weeks on t4 I felt FABULOUS, a feeling that slowly faded as symptoms came back. Unfortunately, my doctor only treated the labs, and the numbers said everything was fine. The symptoms didn't count.
I limped along for a few years, adjusting my dosage every 3 months or so. I started at 50mcg, by 2008, I was taking 175mcg and had gained a ton of weight (I was at 239 at my heaviest). Then, in February 2009, my appendix ruptured. In the course of treating that, the doctor found a very large ovarian cyst on my right ovary, and found that my A1c was 7.9. I was given the dual diagnoses of Polycystic ovarian syndrome and diabetic, I was put on hormones for the PCOS and on Metformin for the diabetes.
I focused first on the diabetes. I completely overhauled my diet. When I read that diabetes doubles your risk of Alzheimer's, I decided on a deep cellular level that I was going to fix this. After thorough research, I limited my carb intake to 45 grams per meal, 3x a day, plus one snack of 10 -15 grams. I made sure they were healthy carbs, focusing on whole grains and fresh veggies. I also began the practice of taking a 20 minute walk after dinner. Within a week of making these changes, I began having low sugar episodes. I went back to the doctor and told him I didn't want to take the Metformin, that I wanted to fix this myself. He gave me 3 months to try it. After those 3 months, my A1c was 6.3. Three months after that, it was 5.9, and it's been in the normal range ever since. I've never gone back on the meds, and my doctor has removed the diabetes diagnosis from my file. As a happy side effect, I also lost 50 lbs.
I didn't have as much luck with the PCOS. Despite the hormone therapy, the cyst kept growing. By September of 2010, I had surgery to remove it along with the ovary and fallopian tube on that side. The cyst weighed 5lbs and was the size of a large grapefruit. On the upside, after it was removed, I was able to stop taking the hormones and back the t4 down to 112mcg.
Throughout all of this this, the itch continued to get worse. By this point, it had progressed from happening only after a shower, to happening after ANY exposure to water, no matter how minor, including my own sweat. It also happened after eating --sulfites/sulfates, nitrites/nitrates, vinegar, eggs, & yogurt were the worst, but I seemed to be reacting to everything. To make it even more frustrating, I didn't react to these foods every time I ate them, just sometimes. The list of things I reacted to seemed to grow every day, and there were times when the itching just occurred randomly and didn't seem to be connected to anything at all. I feared at times that this torture would start one day and just never stop. I went through allergy testing and only found the soy allergy, which I was already avoiding, and tuna, which I rarely ate anyway. I subsequently eliminated gluten, and later dairy, from my diet, but while it did help with some of the IBS type symptoms, it didn't affect the itching at all.
There were other symptoms too. A glass of really good kombucha gave me the worst asthma attack I've ever had and chicken with lime and avocado gave me a terrible bout of veritgo, both of which landed me in the ER. They gave me an anti-histamine, Meclizine, to treat the vertigo, and for the first time, I found something that stopped the itching as well. This led me to research histamines and to info about histamine intolerance and from there to MCAS. Finally, here was something that explained the random reactions, the itching, the asthma, and the vertigo.
Then came the heartburn. I started having horrible heartburn every day, no matter what I ate. I carried a bottle of Tums with me at all times. I figured it was just calcium carbonate, most women can use extra calcium, right? Unfortunately, neutralizing my stomach acid meant I couldn't digest my food properly. It would just sit in my stomach and turn sour, I was leaking sulphur at both ends (sorry for tmi), and it was interfering with my ability to work because I couldn't stray far from the bathroom. I found myself back in the ER, and after an abdominal ultrasound, I was diagnosed with a gallbladder packed with stones.
While waiting to see the surgeon, I researched gallstones, possible causes, and possible treatments, and learned that my antacid use had more than likely contributed to the issue. This is what I learned:
- Digestion starts in the mouth. As we get older, we tend to have more dental work (I do), which allows bad bacteria places to hide and thrive. As we eat, this bacteria, as well as the bacteria in our food, is swallowed.
- As we get older, we also tend to produce less stomach acid. If the problem was really too much stomach acid, it would be teens and twenty-somethings who have chronic indigestion which would resolve as we move into middle age, not the other way around. Because our stomach acid levels are low, the bad bacteria that we swallow is not killed off effectively, nor is our food digested properly.
- This causes the chyme moving out of the stomach to be at the wrong Ph to trigger the release of digestive enzymes. This means that now the bad bacteria grows and thrives in our small intestines causing SIBO, leaky gut and host of other symptoms like IBS and heartburn. Since the digestive enzymes are not released properly, we get things like Histamine Intolerance, lactose intolerance, gluten intolerance, etc.
- Leaky gut allows the partially digested proteins into the bloodstream. The immune system sees these as invaders and creates antibodies to attack them. This creates food allergies. AND because these proteins are similar in structure to our own tissues, the antibodies created can then start attacking our tissue creating autoimmune disorders (in my case, Hashimoto's).
All of this leads to the conclusion that the problem stems from too little stomach acid. However, every doctor that I saw -- the ER doctor, the surgeon, the GI doctor, even my general practitioner -- wanted to give me omeprazole, a proton pump inhibitor to reduce stomach acid, in spite of the fact that an endoscope showed NO evidence of GERD or reflux damage. Because of my research, I decided instead to try supplementing with HCL and pepsin to INCREASE my stomach acid and Histame, a diamine oxidase supplement, to degrade the histamines in my food. It worked amazingly.
Based on this, I have now decided to begin a comprehensive elimination/provocation diet. I'm combining Whole30, AIP, low fodmaps, and low histamine. I will do six weeks on the protocol before reintroducing items one every five days. This blog will reflect my journey as I go through this process. Here is what I'm allowed for the next six weeks:
- Meats: Any unprocessed, unaged, 100% grassfed, pastured, organic.
- Seafood: Only fish that has been frozen at sea, unless you're at the coast and can buy directly from the boat. Avoid shellfish
- Veggies: Squash (any), Leafy greens (excluding spinach), Root veggies (excluding onions, garlic, and white potatoes), Bok choy, Cucumber. Avoid all nightshades, allium, brassicas, and cruciferous veggies, beans & legumes.
- Fruit: Berries (excluding strawberries), Melon (excluding watermelon), grapes, starfruit, pomegrantes
- Fats: Olives (including olive oil), coconut (including coconut oil and coconut butter). Avoid all nuts (including nut oils and nut butters), seeds (including seed oils), and avocado (including avocado oil).
- Seasonings: Green herbs, Ginger, Tumeric, Sea salt. Avoid spices from seeds, nuts, and nightshades.
- Sweeteners: Pure maple syrup, Pure honey, Juice from any approved fruits.
That's it. If it is not on the list, it's assumed that it not on the plate. It should be an interesting ride.
