The Special Carbohydrate Diet (SCD)

As I mentioned in my last blog post, I will be describing the protocols that I will be following over the next several months. The first is the Special Carbohydrate Diet, known in the alternative eating world as SCD. By alternative eating, I merely mean those that do not follow the American Standard Diet. My personal opinion is that the American Standard Diet is most often, not a healthy diet that I have rarely followed it.

I was initially introduced to SCD by Dr. Sarah Glover, who spoke at The Mastocytosis Society Conference in Tampa, Florida in September. Dr. Glover is an internist and GI specialist who has had success with mast cell patients on the SCD.

Then I met another masto warrior with the same tryptase gene mutation as me. Christina Maldonado had been down to tolerating only two foods. She can now eat anything. Before you get really excited, she followed other protocols as well.

CAUTION!! Check with your physician before changing your eating plan or following any new dietary changes. I did check with my physician who diagnosed my gene mutation and he is on board with this.

I won’t go into detail about the science of the diet other than to say the only carbohydrates allowed are monosaccharides. The theory is that we may have lost the ability to digest disaccharides. It is much more involved and you can read the specifics here. Also, Elaine Gottschall’s book, Breaking the Vicious Cycle, is very detailed. I decided I had nothing to lose and everything to gain.breaking-the-vicious-cycle

A big perk for me was being able to eat things that I hadn’t eaten in 4 years! Some of the “free” foods on the SCD are aged cheeses! If I was able to tolerate those, score! So, with a bit of trepidation, I approached my husband. He was in agreement and we spent the next few weeks clearing out our fridge, freezer and pantry of all of the off-limits food. Our kids were the recipients of the “no” list and they were only too happy to take the extras.

Next was shopping day to stock up on all of the SCD legal food. I was giddy with delight at some of the things that were allowed. True, I could no longer have my beloved sweet potatoes, but the trade off was cheddar cheese.

Our environment is a huge part of our success so I made sure to not only have all of the allowed food in stock, but I purchased Elaine’s book and read it cover to cover and also purchased a companion cook book, Lucy’s Cookbook by Lucy Rosset. The recipes looked yummy and I was prepared.lucys-cookbook

Follow along with me as I describe the food I make, how it tastes and how my body is responding.reading-scd-books

Research, My Family and Tryptase Mutation

A few years ago, when I was initially seeing my mast cell specialist, she mentioned a physician at the NIH who was doing a study on patients “like me”. He was doing research on families who were diagnosed with Ehlers-Danlos Syndrome (EDS), had mast cell disorders of some sort and symptoms of Dysautonomia, a malfunction of the autonomic nervous system. She encouraged me to contact him to join the study.

Dr. Joshua Milner spent quite a while on the phone with me, inquiring about other family members as well. He was satisfied that we fit the criteria. I received kits for blood work and packets of paperwork to be filled out and returned. He was interested in studying families who had the same symptoms in multiple family members. Our family sure fit that description. He also stated that there was almost always at least one family member much sicker that the rest… and yes, that was me.

Fast forward about three years and only a couple of sporadic emails between us. I received a call from Dr. Milner advising me that he had found a mutation.
This duplicate tryptase mutation was the culprit causing me to be so sick. Initially, he told me he thought it was causing the mast cell symptoms, plus EDS and the Dysautonomia symptoms too.

But here is where it got a little complicated. I am the only member of my family with the mutation. Yet all the others have EDS. They were diagnosed by geneticists experienced in connective tissue disorders and some (my adult kids) have been diagnosed by 3 separate geneticists over the years.

So now, we are back to square one with the tryptase mutation. It is definitely causing many symptoms, especially mast cell, but EDS may be a totally separate mutation. Dr. Milner now thinks I may be dealing with two mutations; one that my entire family has too, plus the duplicate tryptase mutation.

I met this news with excitement! Identifying the exact mutation opens up avenues for researching ways to block the activity of the tryptase. This is Dr. Milner next endeavor and I await with enthusiasm.

My upcoming blog posts will be a comprehensive, detailed explanation of some protocols that I will be following. I met an amazing woman, Christina Maldonado, at the TMS conference who also has the gene mutation. She followed these protocols and has changed her life. She has discussed them with Dr. Milner as I have, so I am moving forward. Stay tuned…

Hopefully, these crazy vitals will improve…vitals

Getting Brave: Trip Number Two

Bolstered by the relative success of my trip to the TMS conference in Orlando last month, I was getting brave and decided to take trip number two with Brian. We planned a long weekend. Some things were spectacular and again, I learned several lessons about traveling with EDS, MCAS and Dysautonomia that will make the next trip better.

Brian had tickets to see Theresa Caputo, the Long Island medium, in Syracuse. No matter what your belief system is, this woman is amazing. There were a couple of thousand people in the old and beautiful theater. Each reading she did was more incredible than the one before it. I premedicated and luckily, no one around me wore perfume, so I did not need to wear my Vogmask, but I was ready.Caputo theater

Originally planning to stay in the Finger Lakes/Western NY area for some leaf peeping, the forecast was rain all weekend, so we headed east to the Adirondacks. The ride was magnificent with trees showing off their glorious colors.Adirondacks

We first stayed in Lake Placid. My first lesson is always research ahead to ensure there are restaurants that can accommodate your food preferences. I could find only one in Lake Placid… Lisa G’s.  They cook everything from scratch, so they are willing to leave things out that I cannot tolerate. Our hotel, that was crazy expensive for a tiny room, had no microwave and only a tiny fridge with no freezer compartment, so buying food to make for myself was out.

Next, we drove to Plattsburgh. The hotel was wonderful. We had a suite with kitchenette, so we could have cooked our meals there. Not one restaurant or breakfast place in Lake Placid or Plattsburgh had gluten-free foods. Not by Google search anyway. Maybe the locals know of them, but a traveler is out of luck.

So here are my lessons:

  1. Bring more of my own safe food. Even though I wanted a “vacation” without cooking, I need to have food that doesn’t make me sick.
  2. Although it is fun to be spontaneous and just go wherever we decide last minute, that doesn’t work when you have disorders that take such careful planning. I will research the hotels and restaurants much more thoroughly next time and book a suite with a kitchenette.
  3. I will remember to bring my pain relief helpers next time because pain can really dampen time away. I will pack my Epsom salts, TENS unit and myofascial release tools.

Despite some bumpy times, Brian and I had a great time. We rode through some of most breathtaking scenery in the Adirondacks. We spent four full days together, talking, laughing and enjoying each other’s company. For those of you who don’t know, Brian travels a lot for business, so time together is precious.

Here we are savoring an old fashioned A & W root beer float. Yes! I had one too. I had to premedicate in order to enjoy the forbidden treat, but it was oh so good!A & W Root Beer Floats

And once again, I had to spend time recovering for a few days after my return, but getting back to the real world again has been so exciting. Even if I can only do it in little snippets and must recover for days after, it is worth it. Hugs to you all!Lake Placid