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)
- Swiss Chard
- Collard greens
- Garlic, onions
- 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
- 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…
I did a lot of elimination too. For a long time, I was very stringently on no gluten, no dairy, no sugar, no allergens, no sweet fruits or vegetables, etc., etc., etc. Sucked. And like you, I couldn’t tell a positive difference at all.
I had a big epiphany for me when I was trying to force myself to eat “healthier” options rather than foods I was craving, only to have blood tests done and find out that I was actually becoming dangerously high in certain nutrients in those healthy foods. There was a reason (and a very good reason) that my body didn’t want me eating them. There was probably a reason my body really wanted the stuff I craved.
I’ve given up messing with it now to some degree. If my body really wants or doesn’t want something, I’m now figuring it probably knows what’s stored or lacking in my tissues better than I do. I’m just throwing a wrench into it’s beautifully-tuned balance systems.
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I asked my doc for a few blood tests because I felt malnourished. I don’t actually remember what tests she did, but she said I was fine. I wish my body had beautifully-tuned balance systems. Or, at least, I wish I could read them. I generally crave ice cream and red wine, I think my body is trying to tell me it wants happiness. 🙂 Thanks for telling me the crazy diets didn’t seem to make much difference for you, either. I was starting to get annoyed that I can’t tell when I’ve been “glutened”.
Who knows. Red wine is full of antioxidants, and can improve cardiovascular health, and may also increases GABA release, I think. …Or at least, that’s what I’m going to keep telling myself. 😉
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Yes! And ice cream is really good for my sore throat. And soul.
Excellent reply Curiosity and I totally agree. The week before my period I crave dairy products: hot milky drinks, ice cream. If I eat them I’m fine. If I don’t I get awful pre-menstrual tension with horrible mood swings! Like you say, your body knows what it needs.
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I had to drink the Ultra Clear drink. Yuckk! My fiance and his daughter (then not even 3 yet) couldn’t sit in the same room as me because of the smell. My heart goes out to you.
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Yeah, Ultra CLEAR my ass! 😉
**shudder** It smells remarkably like fish food in my opinion.
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My doctor actually said I could use the shakes as MEAL REPLACEMENTS! I’m guessing she’s never had one. ;p
Great post! As you know I have my own demons currently with food elimination (the gluten-free is currently making not one crap of difference, in fact I’ve got new hives and now a butt rash!). I think you can get so obsessed with food that you drive yourself half crazy, not realizing that food alone simply doesn’t cure some diseases! I worry more about nutritional defects than I do about cutting out all berries or which type of kale to eat. If you do have MCAD, histamine is only 1 of the mediators released by mast cells. Low inflammatory diet would help with PD2 and 4 or 5 other inflammatory mediators. But that leaves about 23 mediators totally unaffected by diet!! So if it’s not helping you I’d try re-introducing high nutritional foods back. Even Yasmina, like me, eats blueberries, yoghurt, salmon (and she even eats occasionally eats tomatoes) because cutting them out didn’t help and they are soooo good for you. Look forward to your next post xx
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Thanks! I’ll give you fair warning that in my next post, instead of regurgitating everything I’ve researched and read, I’ll probably just post links to your blog since you have summed things up so nicely. 🙂 I fully intend on adding back berries, bananas, avocados, balsamic vinegar and even tomatoes as soon as I get the nerve. Honestly, all my other eliminations were easy compared to the low- histamine!
Informative post — thank you. I’ve done all the various diets without much effect as well. I haven’t tried an anti-histamine one, though. I will check out the links you provided to learn more. Thanks for posting!
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Thanks! My diet progression has been ridiculous and I wish I felt better or could find ANY cause and effect. Instead, I just get more and more limited in what I can do and miss food more and more. One day soon, I’m just going to eat a whole pizza. In my next post, I’m going to go into the low-histamine diet in detail. It’s awful. No one should do it who doesn’t have to. Hope you are joyful day, Laurel. X
Thanks so much for the good information. I have food allergy issues, and then random reactions to foods in addition. I’m on the GAPS/carbohydrate specific diet right now. It looks like its the same as the autoimmune diet. I’m doing pretty well on it, but I may play around with low histamine stuff if I’m ever feeling like my current diet isn’t restrictive enough. lol. But seriously, it’s good to have more information for experimentation. Like you said, anything to get well.
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Yes, I think my original “autoimmune diet” was based on GAPS. Thanks for thinking my diet tirade is good info! I’m going to finish it as soon as I have energy. A this stage, I’m barely eating any foods, so reintroduction a are in order!
Did you know CoQ10 lowers blood pressure so that may amke you have more vaso vagal episodes.
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Good to know! I haven’t taken CoQ10 in about four months, but was planning on starting it again soon.
I posted this as a reply to the comment you left on my blog, but I was not sure if you would see it so am posting it here. Sorry it’s so long, but I think it might be interesting/helpful to you.
It’s so hard isn’t it? I think it’s hard to sort it all out. I think there may still be some underlying reaction going on with me… possibly… I don’t know. I have to try lentils and broccoli again at some point – I was reacting to broccoli for sure, but I think I will test it maybe in the new year. I definitely have noticed a massive difference now I am being extremely diligent about my food.
For some years I would eat and just really feel bad… but I didn’t realise it was food related because I thought it was just me feeling the usual exhaustion as one of the main times would be post-lunch (when people often report having a slump). I remember eating homemade coleslaw at a pub quite a number of times when I went out for work lunch with colleagues and going back to my desk and just wanting to die because I felt so awful and longing to lie on the ground… but I thought that was my M.E. because I was working at that time and had a lot of personal issues going on that were very stressful.
Eventually I identifed onion after I had my last meal to willingly contain raw onion and reacted in a quite dramatic way (see below). At that point I didn’t identify a strong reaction to garlic so I would have it sometimes in sauces and so on. Also my reaction in the early stages was severe to the raw form of onion/spring onion/chives etc, but I was not as cautious about the cooked form. I didn’t use it in cooking, but I also wasn’t checking every label of things like stock and so on. It was not until recently that I realised that every time I ate my main meals, I was feeling really unwell after and it was affecting my whole day in quite an extreme way. Then when I started to think about it, I realised I never felt ill in ‘that way’ after breakfast and breakfast never contains garlic or onion. Also, and this was a useful test, I felt much better when I ate NOTHING, than if I ate. I felt so much better that for a while I couldn’t bear to ingest anything and I started to find ‘safe’ foods that didn’t make me feel ill and kept eating those. One shouldn’t feel like that really… another lady I know who has a range of severe chronic health problems has the same response (better when not eating a thing) and she has MCAD since childhood. She actually is unable to eat anything and lives on a liquid medical food. She also has reactions to medicines and a whole host of other stuff.
I then started to look at everything I was eating and realised that I was getting minute amounts of garlic, and sometimes onion, in sauces and stocks and other things like pizza sauce and batters/rubs/seasonings. I had been looking out for chunks of onion or obvious onion in dishes and especially the raw or barely cooked versions of it (salad.stir fries etc) and avoiding that…. what I didn’t realise was I was constantly causing a low level allergic reaction.
My reaction to the allium is my eyelids swel and I feel like I am being poisoned. It literally feels as if I have swallowed some substance that is a poison and my body is shutting down. It’s so marked that if I eat something that does not obviously have allium in it, we can all tell that it has as I either go incredibly drowsy to the point where it looks like I am losing consciousness or else I pass out (this happens more with the raw version or trace of raw onion juice on say lettuce leaves in a restaurant). It’s really scary. At the same time I can feel my heart working really hard (I already struggle with tachycardia, but it also seems to beat really hard like a booming beat). I have read on an MCAD/Mastocytosis forum that some people suffering from that issue have the same response to triggering foods. I found that really interesting as it is hard to come by information relating to this sort of reaction, except I did find a tiny group of people on the Internet who also react to onion like that. Anyway, it made me wonder about a mast cell activation component to my disease process, especially when coupled with me having like over 70% of the symptoms listed on the Canadian Mastocytosis site. I do feel that since developing the AI thyroid disease this allergic response seems to have just gotten worse so that I am now super sensitive, whereas it started out far milder (e.g. I could get away with a little garlic in something). It’s almost as if my body thinks the alliums are a foreign invader or something so perhaps this is related to the AI issue rather than Mast Cell.
With the gluten it is different, I think it promotes an inflamatory reaction. I suffer suspected endometriosis that affects my bladder, bowel and my uterus. With the gluten free diet I am not experiencing the severe pains in the uterus, but am still struggling with the bladder (really badly) and my bowel to some extent. As an aside, I noticed my brainfog is greatly improved with it – not all the cognitive issues, but the muzzy feeling I constantly had. Then when I had some gluten by mistake in some gravy when I ate out a while ago, I got a bad response… I was really ill the next day with a migraine, nausea, diarrhea, fever/sweating etc. So now I am really wondering what’s up with that! I am being ultra careful with gluten now and have done more research so I can hopefully avoid getting glutened again.
Hope this helps!
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Thanks for your interesting article. Does the Metagenics Ultra Clear contain salicylates as I noticed its ingredients include chicory root, which is like dandelion ? Did you feel detoxed after using Ultra Clear ?