Patient Power

No one has the time or will to solve the mystery for you, especially when you have “non-life threatening” chronic issues that can have many different causes.

Doctors are very well suited to treat common illnesses and save your life in acute situations, but sometimes, you can’t beat the patient’s or their loved ones’, usually parents, drive to figure out what is really going on. These could be cases where the illness is rare, or even if it fairly common, still not fully understood.

Recently came across the story of Doug Lindsay, who despite being bedridden for 22 hours a day for 11 years, found a cure for himself, first through old textbooks then reaching out to researchers and a surgeon with his findings.

Also revisited the movie Lorenzo’s Oil, based on the true story of Lorenzo’s parents’ race against time to find a cure for their boy, and learned of this interesting tidbit.

At the time the movie was released, scientific studies had demonstrated that Lorenzo’s Oil did not work for other ALD patients who, like Lorenzo, had already developed symptoms of the disease. Lorenzo’s reaction to the Oil was an anomaly. (We are not aware of any explanation for why the Oil worked with Lorenzo.) The worries of the scientists and ALD Foundation leaders about holding out false hope to families (concerns that were ridiculed in the movie) turned out to be entirely justified. Then, in a twist of fate, scientific studies completed ten years after the film was made found Lorenzo’s Oil to be effective in preventing ALD in a different group of people, boys with the ALD genetic defect who did not yet have neurological symptoms. Ironically, these studies were performed by Dr. Hugo Moser. In the movie, the character modeled on Dr. Moser, Dr. Nikolais, is portrayed as the epitome of the unresponsive medical establishment. 

http://teachwithmovies.org/lorenzos-oil/

The study mentioned above (Moser HW et al., Follow-up of 89 asymptomatic patients with adrenoleukodystrophy treated with Lorenzo’s oil) showed an approximately 2-fold reduction in the risk of developing MRI abnormalities.

Cooking Tips from a Reluctant Cook (with a Bunch of Restrictions!)

Improvise ala “Stone Soup”. I remember a class as a child where we reenacted the stone soup story. Starting with an actual stone and adding seemingly random ingredients into the pot. While the result was different from anything I had eaten, it was quite tasty. Most of the time any combination of meat or seafood and vegetables are flavorful.

If you don’t eat any animal products you could try using kelp, tomato, and vegetable broth (celery, onion, carrots, etc.)  to help with umami or even nutritional yeast if you tolerate it. And experiment more with spices.

Breakdown the basic components of flavor: salt, sweet, sour, fat, umami, spice. Replace each with things you tolerate.

At least for me the end result does not have to taste the same as what originally inspired the dish.  Sometimes it actually tastes better than what I was emulating. I joke that I’m creating a new custom cuisine. But, if your goal is to create an exact replica in taste then by all means forge ahead and perhaps let us know of your creations.

Some common substitutions:

  • Egg: commercial egg replacer, or starch (arrowroot, etc.) + vegetable oil + water, or ground flax seed, or garbanzo bean (chickpea) liquid (aquafaba)
  • 1 cup milk: 1 egg + 1/2~3/4 cup water (depending on size of egg), or plant based milk alternatives (hemp, oat, rice, etc.)
  • Butter: coconut oil, animal fat (lard, duck fat), or “vegan butter” products
  • Wheat flour: brown rice, tapioca flours in a 2:1 ratio, or sorghum, brown rice, tapioca in 1:1:1 ratio, or commercially available gluten free flour mixes
  • Umami: tomatoes, celery, kelp, dried fish
  • Soy sauce color: molasses
  • Instead of fermented sauces, be inspired by salsas. Combining ingredients even just a short time beforehand goes a long way in melding flavors.

Living with Multiple Food Allergies: Difficulties and the Silver Lining

In my twenties traveling Italy, my luxury was starting the day at a local cafe with a chocolate almond croissant paired with a cappuccino. All things I cannot have now.

Life’s little luxuries that I took for granted before I became aware of my food problems.

Being able to explore small local shops or new restaurants without worry about how knowledgeable they might be about food allergies. 

Enjoying international travel without worry.

Not having to plan where to get your next meal. Winging it. Being able to get a quick bite or drink wherever you are. Unless you have been deprived of this you don’t know what a huge reprieve this can sometimes be.

Having multiple food allergies and sensitivities sucks in many obvious ways. There is the ever looming threat to your health and even your life. And it is nearly impossible to eat out or accept food from others and can put a pretty significant dent in your social activities. You have to preplan all activities so you know where your next safe meal comes from.

And now having a child like that too, it is more difficult and costly to find childcare. Outsourcing food needs are even more complicated. You need to be vigilant that your child doesn’t accept unknown food from others.

Yet, there are some bright points.

You are more likely to eat healthy, with less processed foods and less eating out. 

You save money. You might spend more on groceries and some specialty items, but this is likely less than the cost of eating out more frequently.

You try foods that you might never have otherwise to try to expand your diet as much as possible. Or eat some foods more frequently than you might have.

You learn things about food that you never would’ve otherwise. Some of course not so savory like what is allowed in our foods.

Multiple food allergies and sensitivities made me appreciate more a fully functioning stable society with a safe and reliable food chain, quality control, lots of choices catering to niche diets and needs, etc. And of course having money to spare to spend extra on food.

What happens in a disaster situation? War situation?

I found my choices rather limited even in a modern hospital. What if I ever ended up in prison?

What if some sick person or entity turns this knowledge against me?

If we were to go entirely back to subsistence farming and/or hunter gatherer society, it would be tough on everyone but my odds probably won’t be terribly worse than others. Whereas a scarcity situation of modern foodstuffs resulting in only the most typical choices might be much more problematic.

Our Journey with Infertility

Back several years ago we were diagnosed with “unexplained infertility” and found ourselves in a fertility clinic. While we didn’t desperately want a child, we wanted to know what was wrong and if something could be done about it. We were given a very long questionnaire to fill out. We studiously filled out all the details in hopes that they might spot some kind of pattern.

Nope.

At least for us, nothing further was mentioned about anything in the questionnaire, our testing so far, or any of our health history. We were just ushered towards standard protocol.

A few rounds of IUI (intrauterine insemination) with clomid, then onto IVF (in-vitro fertilization). There was some recommendation towards ICSI (intracytoplasmic sperm injection, manually injecting sperm into egg), due to sperm morphology issues, but that was the extent of any customization for our specific case, if you will. In the end it didn’t matter since we declined IVF.

Later when I found out about the connection between gluten sensitivity and unexplained infertility, I couldn’t help but wonder why didn’t anyone look at that angle at all.

It’s known that celiacs can have infertility. What if we just don’t know that yet for other foods? When I found I had a serious problem with wheat, I wondered if that would resolve our unexplained infertility.

It didn’t. 

But, after finding more problem foods (the last was sneaky soy) three years into our food experiment, and feeling the healthiest in my life, we got a huge surprise!

We now have a child we thought we’d never have. All in all we spent nearly ten years as a couple without using a foolproof method for contraception and never got pregnant.

There is no way we can definitively prove that this had something to do with eliminating everything we were allergic or sensitive to, but subjectively we can’t help but think that at least for us it was the key.

Salicylates and Nocturia?

When I experimented with intentionally eating lots of foods high in naturally occurring salicylic acid, the clearest issue that happened was needing to urinate frequently overnight, up to six times during eight hours of sleep.

Is there any research about this?

A brief search turned up conflicting information. (Aspirin is acetylsalicylic acid).

Aspirin side effect: Nocturia

vs.

J. Le Fanu, The value of aspirin in controlling the symptoms of nocturnal polyuria

Housekeeping Tips for Environmental Allergens

This started for my spouse’s dermatographism after testing positive to almost all environmental triggers (dust mite, pollen, mold, cat and dog, etc.). This may all be due to mast cell activation syndrome (MCAS). In real life my partner reacts to dust mite, some pollens, cats, and possibly mold.

No fragrance (soaps, shampoos, laundry detergent, lotion, cosmetics, etc.).

No harsh cleaners (vinegar, baking soda suffice for most jobs).

Hot wash and dry all sheets, pillow covers, blanket covers, etc. at least once every two weeks. Dust mite reproduce in a month.

Use a dust mite proof mattress cover.

On a side note, it may actually help to NOT make your bed. Dust mite thrive in moist, warm environments. Expose your bed to the cool and dry air. Hang blanket over headboard or something if possible.

No carpets, if possible.

Vacuum frequently (at least once a week) with a model that has hepa filters.

Ventilate. Ventilate. Ventilate. Keep everything dry.

Keep an eye out for any spots that tends to hold moisture for mold growth.

Treat with vinegar at first sight of any mold.

Be very careful about using chemical insecticide, try to find alternatives. Diatomaceous earth maybe?

Dermatographic Urticaria

What is it?

Also called “skin writing”, where friction (scratching or some other contact) causes red hives or raised skin.

Cause?

Likely an overabundance of histamine in the body. Some possibilities might be mast cell activation syndrome (MCAS), environmental allergens, mild chronic food issues, high histamine foods, histamine releasing foods, or body does not break down histamine well due to lack of enzymes such as diamine oxidase?

Ways to control?

Aside from antihistamines, our allergist at the time recommended better control of environmental factors such as dust mite control and removing fragrance. Also to avoid tomatoes and berries (histamine releasing foods?).

What happened?

My partner’s dermatographism disappeared along with our diet experiments but at the same time we started better management for environmental allergens as well, so it is not clear what was the main culprit. Regardless this didn’t come back except for a brief return during travel when we had much more fermented foods and was in a dusty environment. So again, not sure which is the cause, or perhaps it is both.

Insecticide Incident

Several years ago we almost killed ourselves trying to rid our home of ants. Of course this is a slight exaggeration, but our health issues flared for nearly a year after spraying our kitchen and ultimately led us down the path of diet experiments. We now know better than to turn to chemicals first.

Between the two of us, a couple of issues that seemed to be linked to the insecticide was extremely heavy periods that lasted nearly a year and hives covering the whole body that just wouldn’t go away for weeks even with antihistamines. It only calmed down later doctor prescribed prednisone (steroid).

This reminded me of my aversion to bug repellent or mosquito killers as far back as I can remember. Family used to tease me that I was a bug in a past life. Does salicylate (as nature’s pesticide/ insecticide) sensitivity or multiple chemical sensitivity have a connection to repulsion toward strong scents and insecticides?

Questions from Celiac Disease

Wheat/ gluten is the best studied, but for other foods how can you know if you might actually have an autoimmune issue like celiac disease and not an allergy?

This matters because, if one has an autoimmune disease like celiac, even if there are no noticeable symptoms (silent celiac), you must strictly avoid. Whereas the guidelines for allergies might be to eat at your tolerance level so that you can gradually desensitize.

What if, even below the threshold for symptoms one is causing harm to oneself as in the case of celiac? What if we just don’t know that yet for other foods?

For allergies there is also the possibility of outgrowing the sensitivity so it is recommended to periodically test tolerance, whereas for celiac disease you need to avoid for life.

Thoughts on Gluten Cross Reactive Foods

After coming across many blogs talking about “19 gluten cross reactive foods” I was first concerned and worried, then overwhelmed by the sheer number of foods that may be problematic.

Then I found another busting the “myth” (Christina Graves), doing a better job of it than I ever could, and clearing up the confusion. This also prompted me to finally read at least the abstract and conclusion of the original study (Aristo Vojdani, Igal Tarash Cross-Reaction between Gliadin and Different Food and Tissue Antigens, Food and Nutrition Sciences, Vol.4 No.1, January 2013). The 19 foods were the initial suspects, so to speak, but among them only milk, corn, rice, and also millet and yeast (but these possibly due to cross contamination) were found to possibly cause issues. Also the study was done for cross reactivity with α-gliadin, relevant for celiac disease.

Had I gone to the source from the beginning, I would have known that this probably doesn’t apply to me to begin with. As far as I know I am not celiac. I am most likely reacting to ω-gliadin (based on the fact that my symptoms are exacerbated by exercise), another component of gluten. And those are not the only two parts that make up the structure of gluten! NCGS (non-celiac gluten sensitivity) might involve other parts.

Along with gluten, I too have problems with milk (confirmed allergy) and fresh yeast. Does it mean anything that it partially matches the study’s results?
Among the 19 suspects, I have problems with quinoa, buckwheat (confirmed allergy), and amaranth.
But are these cross reactions to gluten? More likely they are separate problems of their own or cross reactions to my other allergies.

As I too started my food journey by going gluten free, it was all too easy to think that I was either being “glutened” or was having gluten cross reactions when I continued to have symptoms. At least for me, the answer turned out to be additional allergies and sensitivities apart from gluten. This is also mentioned in the original study’s conclusion.

“If after adherence to a strict gluten-free diet and the elimination of cross-reactive foods symptoms still persist, further investigation for other food intolerances should follow.”

Yet again, cross reactivity is a complicated issue, at the molecular level. While it can  indicates increased possibility, it may or may not apply to you. Depends on how your immune system identifies the “offenders” and how accurate it is. So, individual answers may all be different.

Following such lists can be misleading, inconvenient, possibly dangerous without first testing yourself.

Regarding testing, along with formal skin tests, blood tests, or even endoscopies, carefully done elimination diets, food challenges, and possibly data tracking and molecular structure simulations might help find answers.