DIETS Part I: gluten-free, allergy, autoimmune/anti-inflammatory, classic elimination, and low-histamine.

My mother told me recently that she only gave me soy milk for a long time as a child after my allergy testing showed I was allergic to half of the things on this planet. This is when I was 3. I’ve always known the story of the skin-prick tests done on my tiny 3-year old back. My mother was torn in pieces listening to her baby wail, so I’ve heard about it often. I knew the testing showed I was allergic to lettuce and rabbits and newspaper and so many other things it seemed like a joke. I thought we had always just ignored it to no consequence and that the first thing I ever stopped consuming was MSG sometime in the 90s. I kept swelling. One day, I awoke with my face blown up like a balloon: my eyes were slits, my lips made it difficult to speak, I could barely bend my fingers. This happened after eating frozen egg rolls in the wee hours, after a night at the pub, so I became really vigilant about avoiding MSG. Then, a few years later, I ate at a Thai restaurant with my sister. I never tempted fate with Asian food, but, god, I missed it! and the restaurant swore there was no MSG in their food. The next day, my face was swelled up, so I never tried that again. I still don’t know if the culprit is definitely MSG, but avoiding it, as well as all Asian food, stopped those acute episodes.

My next elimination was alcohol in 2002. It should have been difficult, but I thought it might be causing me to repeatedly go into anaphylactic shock, so I had no choice. When you’re worried about dying, you’ll give up anything.

I ate and drank anything I wanted for ten more years. And I ate a lot. Since I shed my college weight, I’ve always been around 7 stone (I haven’t switched to thinking of myself in pounds because I like the nice neatness of “7 stone”) and my husband would joke that I ate way more than he did (he’s 14 inches taller than I am). After thyroid ablation in 2009, I couldn’t eat as much as I used to – I didn’t diet, my body simply got full quicker and wasn’t hungry all the time anymore.

In 2012, while trying to cure what ails me, I stopped eating gluten. It never occurred to me that it would be permanent, but it seems it might be. It didn’t change how I felt one bit, but, after talking to numerous doctors and reading this book, it seems like it would behoove me to continue to avoid it – if not for ME, then for my (other) autoimmune conditions.

Soon after that, I had blood tests done that showed allergies to cod, tomato and egg. Giving up cod was no problem, tomatoes and eggs almost killed me. But, I thought, what if? So, I stuck with it and it’s now been a year and a half and, you guessed it, I felt no change.

When I started seeing the Good Doctor last year, she put me on a diet for autoimmune conditions which, she said, resembled most anti-inflammatory regimens. I stopped eating all grains but oats, all legumes, dairy and starchy veg. I cut down on sugar, I stopped eating processed foods, I stopped drinking sodas – even “healthy” stevia ones, even flavored fizzy water. I stopped chewing chewing gum, stopped eating lozenges with colourings. Although I missed all of these things, it was similar to anaphylaxis – I felt like I was (am) dying and would do anything to improve my situation, so the choice was easy. I stuck with this protocol for almost a year and… Felt no different.

This past August, my doctor switched me to a more “traditional” elimination diet. I was allowed to add back grains (except corn) and legumes (except peanuts) but stopped eating red meat, pork, processed meats, shellfish, soy, citrus, and most forms of sweetness: honey, maple syrup, agave nectar, and, obviously, sugar. This was only meant to last for three weeks before tackling challenges, but I took a turn for the worse with my symptoms and doing food challenges showed nothing definitive, so I’ve kept everything eliminated. Compounding this restriction was my low energy and my husband’s overwhelmedness with the changing shopping rules, so neither of us got out of the habits formed over the last year. I joyfully started eating rice again, but didn’t really explore other grains or legumes. Once you’ve been doing something for a long time, it seems a monumental effort to change.

When I saw the Good Doctor again at the beginning of this month, she wanted me to continue this elimination for three more weeks, while making a concerted effort to detoxify my liver because she is thinking of testing me for heavy metal toxicity and, if necessary, going through a chelation protocol. Specifically, what she told me to do was:

  • EAT FOODS TO IMPROVE LIVER DETOXIFICATION:
    • Cruciferous vegetables (broccoli, brussels sprouts, cabbage, cauliflower, watercress)
    • Kale
    • Swiss Chard
    • Collard greens
    • Garlic, onions
    • Grapes
    • Berries
    • Green and black teas
    • Herbs and spices such as rosemary, basil, turmeric, cumin, poppy seeds, black pepper, and lots of cilantro!
  • Metagenics Ultraclear formula: drink one shake each day (she already has me taking their probiotics and I get a patient discount).
  • Supplements [I am very happy to be taking vitamins again. I stopped all supplements and vitamins 3 months ago and never intended to stay off of them for so long. I’m eager to add more (CoQ10, Acetyl-l-carnitine etc.), but she is making me take things slow.]:
    • Vitamin D
    • Vitamin B6 & B2
    • Biotin
    • Glutamine
    • Zinc
  • Green detox soup[I said yuck to this soup because I thought it sounded like a warm green smoothie and I thought I didn’t like fennel, but it turns out it is SO DELICIOUS and I like to have some every day.]

This soup is a gift to your liver to help it with its critical role in cleansing and filtering the blood. Sulfur-containing foods, such as onions and garlic, will keep your glutathione levels and antioxidant power high. Cruciferous vegetables are great for all your detox pathways, especially estrogen. Enjoy this soup for breakfast, as a snack or any time of the day. You can make a big batch and freeze it in small containers.

Makes 4-6 servings

1 tbsp extra virgin coconut oil or olive oil
1 small onion, diced
1 tsp minced ginger
2 cloves garlic, minced
1 celery stalk, chopped
3 cups chopped broccoli, florets and stems
1/2 head fennel, chopped
1 tsp salt
3 cups water
1/8 tsp freshly ground pepper

Heat the oil in a medium pot on medium high heat. Add the onion and ginger and cook until onion is translucent. Add the garlic, celery, broccoli, and fennel and a generous pinch of salt and continue to cook another 2 minutes. Add the water, remaining salt and pepper. Bring to a boil, then cover, reduce the heat, and simmer for 20 minutes. Place the soup in a blender and blend until smooth and creamy. Adjust salt.

Now the fun part: I haven’t been eating the chard, onions, grapes and berries she instructed me to because I am experimenting with a low-histamine diet. I am always trying to link seemingly unrelated conditions from my past to what is happening to me now. Just like I thought (think) dysautonomia explained not only my symptoms now, but issues I had pre-ME like Raynaud’s and fainting, I started to seriously look into histamine intolerance (HI) and mast cell activation disorders (MCAD). The swelling, the idiopathic anaphylaxis (which happened more often than not during my period), the alcohol intolerance, the dysmenorrhea, the hypotension and syncope (which happened more often than not during my period)… All of this makes sense in the context of a histamine problem. I used to wrack my brain and research incessantly to try to figure out why I was going into anaphylaxis but they could find nothing to which I was allergic. Was it the alcohol? Was it my period? Was it garlic? Was it ibuprofen?

When the allergist explained autoimmune urticaria and angioedema to me, he said the rashes I got during anaphylaxis and the swelling I’ve always experienced were the same mechanism in the body, just in different dermal layers. He said they are caused by tissue permeability and leakage and any vasodilator, such as alcohol, will potentiate the problem.. To demonstrate the autoimmune process, he injected me with my own plasma and I had a reaction on my forearm similar to the histamine control. He said these episodes could be brought on by emotional turmoil or stress and there is nothing to be done but take antihistamines. I counted myself lucky because some people have horrible chronic urticaria (I really recommend the film, Fat, Sick & Nearly Dead).

The more I researched histamine issues, however, the more I realized that my allergist, like all doctors, is limited by what he doesn’t know and what science hasn’t discovered. I asked my GP, the Good Doctor and my new environmental doctor about testing for MCAD and every one of them said they don’t know how. It turns out there really aren’t good tests, but they didn’t know this ~ they didn’t know anything about it!

I am going to continue the info about my low-histamine diet experience in Part 2 of this diet post (as well as all the other crazy elimination diets I’ve been researching: ketogenic, alkaline, low-salicylate, migraine) because there is a lot of information. But I’m giving you homework, if you’re interested in this topic at all: Listen to Yasmina Ykelenstam’s (The Low Histamine Chef) interview with Dr. Janice Joneja. There are 2 parts, but the first part is the most important. Get comfy because it is 49 minutes long and have a paper and pen ready. I’m telling you, it’s worth it. Dr. Joneja is so clear and knowledgeable.

Until next time…

Advertisements

Throwback Thursday: Autoimmune Thyroid Disease

I have had an itch under my jaw, deep in the tissue of my neck for years. In 2009, I decided to mention it to a doctor one day and, although she didn’t feel anything abnormal in the area of the itch, she did casually say, “You do have a lump on your thyroid, though.” I had a thyroid nuclear test done and a radioactive iodine uptake test which showed two toxic multinodular goiters.”Toxic”, meaning thyroid hormone was being produced at an increased rate, which is why my thyroid stimulating hormone (TSH) tested so low. “Multinodular” because it was a late-stage goiter, meaning it had been around for a while and had a chance to grow and become lumpy. In my case, I had been hyperthyroid for at least 7 years ~ my first abnormal TSH result was in 2002, but my doctors never pursued it and I didn’t know enough to insist.

This was my first experience with specialists. I had only ever dealt with general practitioners and emergency room doctors. The research doctors that diagnosed me were bizarre. They came into the room and peered at me like I was a specimen, their faces frozen into pensive seriousness. I started cracking jokes to break the tension, but they didn’t respond in kind. They asked me questions with long quiet pauses in between, during which they would look at each other and mumble and nod: Do you have flushing? Are you intolerant to heat? Do you shake? Stick out your tongue. Hold out your hand. Have you experienced any anxiety symptoms?  I finally stopped them and asked what they had found ~ they had told me nothing! Do I have cancer? No. Do I need surgery? No. Okay, now you can ask me more questions.

I had to do both nuclear medicine tests twice because too much time elapsed from my first round of testing to go forward with treatment ~ radioiodine ablation. After you have radiation treatment, you must stay away from people and animals for a few weeks, use different cutlery, use a different toilet and/or flush twice. It seemed like a big decision, but the doctors told me it was a terminal problem. I’ll never forget that. They said there wasn’t a very long life expectancy for people with untreated hyperthyroidism. Huh? Seriously? I didn’t seem to have a choice. So, I did it. I killed the whole thyroid and started taking hormones every day for the rest of my life. I never missed a day of work through this experience. During the segregation weeks, I holed up in the restaurant office, alone. I remember encountering a pregnant lady on my way to the rarely-used toilet in the basement and leaping back out of her space as if I’d been electrocuted… high-tailing back into the office so she wouldn’t be exposed to radiation. What must she have thought? 😉

Interestingly, I never felt like the symptoms abated. The flushing and hot flashes (my most visible symptoms, which I chalked up to oddly increasing self-consciousness) and the anxiety (which I blamed on my job) ebbed a little, but not much. And, of course, this was undoubtedly part of the priming of my body for ME. Hyperthyroidism and my anaphylactic episodes started about the same time. It was the beginning of the end.

Below are the photos and email that I sent to friends and family back then, hoping that it might open someone’s eyes to thyroid problems or make them listen a little bit more to their bodies. The fact that I thought I was having “devastating” and “debilitating” symptoms then strikes me as funny now… and sad. What was happening to my body because of my thyroid problems was NOTHING compared to what is happening to my body with M.E. They’re not even on the same planet … in the same universe. Can’t I go back to my old serious  health problems?

I have attached 3 pictures that I took before I got radiation treatment (ablation). The first is looking at my neck as I stand relaxed, the next is with my head back and the third was taken as I swallowed. I can’t believe I never noticed the lump on my thyroid. I can’t believe nobody else did. I can’t believe, with 7+ years of abnormal TSH (thyroid stimulating hormone) levels, neither a doctor nor I, myself, looked any closer at my neck or my symptoms.  [The radioiodine must have swelled my thyroid, however there was definitely a visible lump before treatment that I never noticed until it was pointed out -and it is unforgivable that no doctor ever took the time to look further into my bloodwork or palpate my throat.]

straight on

Head straight on.

So, I guess I’m hoping this email influences everyone to pay closer attention to their bodies. Look closer: know every line and lump so you’ll recognise changes. Listen closer: if your body is constantly telling you it’s way too hot or way too cold or way too tired or way too hungry, don’t ignore it. Don’t wait for a doctor to find out what’s wrong with you ~ question everything that feels wrong.

It turns out I wasn’t overheated & flushing because I’d become suddenly self-conscious. It turns out I didn’t just “get lucky” with an amazing metabolism. I wasn’t having floods of anxiety that caused my heart to race & skip beats because my job was stressful. I wasn’t debilitatingly exhausted because I worked too much & didn’t sleep enough. Well, at least not entirely.

head back

Head tilted back.

It’s still going to be a long road ~ my doctors say we could be tweaking my medication for years. I still vacillate between feeling ok and feeling dizzy and wasted… I eat about half what I used to… I’ll have to take hormones forever…. But, it’s not out of the question to go to a movie after a day’s work and I don’t spend my weekends crumpled in a ball, sobbing, asking what’s wrong with me while my husband wonders what to say….

I’m angry that I spent so long feeling that way and just explaining it away. I hope this inspires everyone to take a minute to think about your body and your quality of life. It’s all too short! Take care of yourselves!

swallow

Swallowing.

Doctor follow-up: symptoms, sleep, diet.

I haven’t taken vitamins or supplements in 19 days (except probiotics in the morning, magnesium at night and fish oil here and there). When I wasn’t sleeping, I decided to wash-out everything and, when I saw the Good Doctor last week, she wanted me to hold off on adding them back until I had challenged some foods. So, in the next month, I will be challenging soy and citrus, which I haven’t eaten in a month, and corn, dairy and eggs, which I haven’t eaten in a year. Honestly, I don’t know how I will identify symptoms ~ for no reason, sleep disappears and headaches hit me like a freight train. A few days ago I woke up with all over muscle pain: thick, heavy, stiff, achy, contracted muscles from tip to toe. I started waking up in the night again in a full-body tense stretch, jaw clamped down painfully, neck and back arched. It is coupled with daytime tiredness that stopped me writing, reading, talking… This wasn’t the bricked feeling of ATP running out in my cells, this was pure tired, like I was convalescing. It’s still with me today, but I want to write, so I force myself to sit at the computer.

I hate when old symptoms return. I thought perhaps spine pain and muscle aches were gone for good, but here I am with a new bottle of Tizanidine. I made a list of what could be causing it: Scooter? Adding back legumes? No supplements? Weather? Period? This week has also felt like awfully bad allergies, which shouldn’t be happening at the end of August. I actually had to take my inhaler and I couldn’t wear my cpap last night because my nose was plugged, even after multiple shots of antihistamine nasal spray. My headaches have mostly dissipated, only rearing up when I tweak my neck (which is about every other day; the nighttime muscle contractions don’t help), but I’m left with leaden cotton wool filling my skull and plugging my orifices. It feels like an orange on a toothpick, my neck too weak to hold the bobble head. I’m chalking it up to the weather. Seattle turned into a tropical rain forest this week. The temperature in my room is 74 degrees and the humidity is 74%. I keep saying, “It’s so close!” The only way to describe it.

Some good news: I’ve actually slept relatively well the last 7 nights ~ with only melatonin ~ which is miraculous. I have had a resurgence of mild night sweats for the first time in a very long time. But, we’re going to ignore that and the lack of deep sleep and concentrate on the positives: My current average hours of sleep, average time awake and average time to fall asleep:

An average of 8.5 hours sleep? First time ever in my life!

An average of 8.5 hours sleep? First time ever in my life!

38 mins awake, on average,  when it used to be 2 hours!

38 mins awake, on average, when it used to be 2 hours!

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

A glorious average of 9 mins to fall asleep! (this was tipped by the unheard-of ONE MINUTE it took me to fall asleep last night!)

Other things I talked about with the Good Doc: She doesn’t feel comfortable with prescribing saline IV infusions, she is thinking about digestive enzymes, she wants to get my vitmain D levels between 50 and 80 (they were 30 last March), and she doesn’t want to do a tryptase test to look for Mast Cell Activation Disorder (MCAD).

If anyone is interested in my elimination diet, she said she thought coconut sugar would be okay (I haven’t quit sugar yet; I’m a junkie) and she wanted me to avoid xanthan gum, guar gum and carageenan. This is virtually impossible using dairy-free products, so I’m not taking it too seriously. My husband spent half an hour in Whole Foods reading the labels of nut and coconut milks: if you want to avoid sugar, cane juice and soy lecithin, you won’t be able to avoid carageenan (if anyone has more info, please tell me!). The best bet seems to be Pacific Almond Milk (which has carageenan and “natural flavor”) and Rice Dream, if you don’t mind the calorie and sugar content (I love the taste, but it’s high-glycemic load causes my blood sugar to crash).

She also wanted me to watch the teas I drink, since this is the only thing I drink besides water. You can get all the info about teas from this FoodBabe blog. Basically, I am trying to stick with Numi, Traditional Medicinals, Rishi (which is even more expensive than the other expensive organic teas) and maybe Choice. I splurged and bought this yesterday: Rishi Turmeric Ginger Loose Leaf Tea ~ how good does that sound for what ails me?! (I reckon, in the good ol’ days, I would have spent about that much on one cocktail, including tip, so I deserve it. I ignored the voice that said, Uh, you have no income.)

Lastly, I saw my endocrinologist for my yearly check-up. He increased my Levothyroxine to 37.5mcg five days a week and 25mcg on the weekends and kept my liothyronine at 10mcg/day. He also thought I should see an immunologist. I didn’t even know they existed. Not that I think they could find anything… except maybe help with my MCAD theory (that’ll be another post).

That’s my update. In a few days, my Mother is coming from Ireland for THREE WEEKS to help us out and take a bit of the burden off my husband. One of my brothers is flying across the country to see me at the end of September and my other brother, the pilot, has a layover here the same week. It’s so exciting! Gratitude today, once again, is for my family. They continually help me, encourage me and remember me.

My beautiful niece sent me this card. :)

My beautiful niece sent me this card. 🙂

Cold War

I’m tempting fate talking about this, but it has been exactly two years since I have had bronchitis and/or a cold (they usually went together for me). I would say, in my old life, on average, I used to get a cold about once a year. I never paid much attention, though. As I’ve said before, it was never a big deal to get a cold and most restaurant employees would have to be on death’s door to miss a shift. I would joke that I might faint or go into anaphylactic shock or grow thyroid goiters, but I wouldn’t catch a cold.

Once I got sick with ME/CFS, I went through my medical records with a fine-toothed comb, hoping to find some clue to solve the mystery of my illness ~ that’s why I know the exact dates of my last cold. I had returned from Ireland a few weeks before (I think now, will that be the last time I am there?) and made an appointment with an allergist to ask about my eye and tongue swelling which had been going on during my visit home, plus a bad episode of pre-syncope. He had diagnosed me with autoimmune angioedema and urticaria by injecting my own plasma under my skin and watching a HUGE welt emerge. Great, I love being allergic to my own blood.

I then worked 11 days in a row and, as the weekend arrived, the bronchitis hit. It lasted two weeks and, although I finally went to the doctor, I didn’t take the antibiotics or steroids she gave me and I didn’t take any days off work. My father visited over the weekend that the infection was tapering off ~ we had a lovely time ~ and then I worked a few more weeks before flying to Virginia and getting sick with viral gastroenteritis that landed me in the ER, getting fluids. A few months later, the flu shot triggered this new life. No wonder that vaccination was the straw to break my immune system’s back! This is the message I want to get out: PAY ATTENTION TO YOUR BODY! HEED THE WARNINGS!

Anyway, there are very thin, very pale silver linings to my situation and I search for them daily, in an endless quest for gratitude and acceptance. This week I think, Two whole years without a cough or congestion or phlegm or wheezing! I try not to think, Yeah, but who cares when I’ve had endless flu for 21 of those months? I would prefer to be sick with bronchitis every day of the year than live with a disease that does not allow you TO EXPEND ENERGY. But I don’t go there. I know one day I will have to contend with a cold on top of ME and, until that day comes, I am going to be very, very grateful that my lungs and nasal cavities are clear.