On Monday, May 12th, I started my third week on the low histamine diet recommended and modified by the Mastocytosis Society Canada. Also on that day, my husband received a new leave in hair product that you apply after shampooing and conditioning and started it immediately.
Week three was not that great. I reacted seemingly randomly and also could not add any additional food into my diet. This was a disappointment because of the improvements I experienced on week one and week two.
Two days after my week three summary, I posted that I was experiencing more intense episodes instead of a some what steadily increasing worsening of my symptoms. I almost experienced my first (?) anaphalaxis episode just by going to a store. My overall health was dramatically worsening and I became easily overwhelmed and fatigued. Nothing went well in week four and my husband and I began to frantically look for a cause. Seeing my doctor on Friday only got me a referral to an allergist and the reluctant acknowledgement that it did sound like I had a mast cell activation disorder.
Thus week five did not start off well. After an 18th month absence my asthma came back. The next day I saw the allergist and that appointment was basically a waste of time. I again tested negative to environmental allergies and wheat. My lung function at the appointment was above normal and my hives were not currently present. I was told to come back if I got worse. By the time I got home from the appointment, I was worse. After week five, we decided to restart the low histamine diet to see if taking out the added foods would improve my health.
After four days back on the basic diet, I was still worsening and not having enough energy to do the diet and care for my children. So, I went back to my normal foods with the exception of gluten. I did start having minor rash after one meal but that was it. Heartburn and nausea have thus far stayed away.
Then one day I felt better in regards to energy and my ability to focus - my asthma was still hanging around. All my husband had to do was walk in the house to know that things were much better. He then commented that he had not used that new leave in hair treatment the night before. He stopped using it and I had several good days up until yesterday. We had talked about the fact that maybe he could use that product before leaving the house. Unbeknownst to me he used it yesterday morning and I felt worse. He then used it again today and I had a pretty bad day. I told my husband this via e-mail and he let me know that he had in fact used the product in the morning for the last two days.
So, that product is trash. It has a related shampoo and conditioner that we are not sure about. If my asthma continues then we will likely get rid of the whole set.
It is crazy, but not unusual in the MCAD community, to have something as simple as the use of a hair product have devastating consequences. While we don't know how long the effects of this reaction will last, we are incredibly thankful that I am no longer worsening and had improvement immediately upon stopping use of the product.
This means, of course, that a low histamine diet might potentially still be beneficial to me. We have some traveling coming up and once we are back home we might pursue a low histamine diet transitioning to a high nutrient diet once again. For the time being, we are just focusing on going gluten free.