Friday, July 22, 2022

News from Our House: ME/CFS, GI Problems, and Diet

Did you miss me? For once, it wasn't my ME/CFS or Lyme that kept me from posting on my blog or making new videos!

We had to take an unexpected cross-country trip. My father-in-law passed away at 97 years old the first week of July. He had severe dementia and had lived a long life, so it was time. He wanted to be buried next to his wife, where he'd lived most of his life, in Oklahoma. So, my husband and I headed out on a long road trip. There was no way I was going to fly on a packed airplane with no one wearing masks and delays and cancellations rampant!

We drove four days to get there, staying in hotels along the way because it was much too hot to bring our camper (105 in Oklahoma!). The funeral service was lovely, with friends and family coming from near and far and lots of personal stories and memories. And then, we drove (well, my husband drove) another four days back. Other than some back pain from sitting in one position for too long, I do well on long car rides--it keeps me off my feet and forces me to do nothing! But we were both very glad to get back to our own bed and the couch and recliners!

No time for sightseeing but we passed by the Gateway Arch!


ME/CFS, GI Problems, and Dietary Changes 

Since my ME/CFS first started in 2002, GI problems had not been a big issue for me. The mild digestive symptoms I did have were completely eradicated when I discovered I'd become intolerant to dairy and began avoiding it. A full 30% of those with ME/CFS are dairy intolerant, according to one study, so definitely test that out if you have any GI symptoms.

But in September 2021, for no discernible reason, I suddenly developed chronic diarrhea. With the help of both my Lyme specialist and a functional medicine specialist, things have improved in recent months, mostly thanks to loads of probiotics--very specific ones, based on stool testing to show what I had too much of and not enough of (note that the testing did not show any pathogens). But I am still reliant on very high dose probiotics and still don't have an answer as to why these problems suddenly began last fall.

Food Sensitivity Testing

Before we left, at the end of June, I received the results of Food Sensitivity Testing (from Alletess). This is IgG testing, measuring the immune response to various foods. My Lyme specialist recommended it, and I didn't expect to learn anything surprising. After all, I already knew I was intolerant to dairy, and nothing else seemed to upset my stomach.

So, what a surprise it was to look at my results and see more than a dozen food ingredients show up as mild to moderate sensitivity, including:


  • Cashews
  • Pistachios
  • Sesame


  • Macadamia nuts
  • Poppy seeds
  • Grapes
  • Pineapple
  • Watermelon
  • Black-eyed peas
  • Chickpeas
  • Green peas
  • Peanut
  • Soybean
  • Casein
  • Whey
  • Cow's Milk (no surprise)
  • Egg white
  • Oregano 
  • Peppermint
  • Rosemary

There are a few others, but these are the main ones that I eat most often. I was eating eggs every day, drinking peppermint tea every evening, and even taking capsules of oregano and rosemary every single day ... for years! We often cook Asian-style meals with plenty of soy sauce and sesame oil. I used whey powder in my daily smoothies for lunch. And guess which nuts I most often eat, as part of my mostly-Paleo diet? Yup, cashews, pistachios, macadamias, and peanuts (not a nut, I know). In fact, since I knew I couldn't have dairy, I was eating dairy substitutes like cashew milk, cashew sour cream, and cashew feta cheese (all excellent, by the way), plus eating plain cashews and cashew butter daily!

I discussed the results with my Lyme specialist while in the car on the way to Oklahoma, and she explained some things. She said eating a food constantly (like eggs, peppermint, or cashews) could make me more sensitive to it. Also, since most of my test results showed only mild sensitivity, I could probably tolerate them once in a while, if I avoided them most of the time. She said the key was lots of variety and not eating the same thing every day ... which I had been doing!

Dietary Changes

So, I took her advice and eliminated everything on my sensitivity list from my regular diet, though I do splurge once in a while. I really love my smoothies and know the whey powder is a glutathione precurser, so I have a smoothie once a week (and am searching for a protein powder with no whey, peas, chickpeas, or soy - probably won't find one!). 

sigh ... no more daily Paleo smoothies!

I avoid eggs all week and use only the yolks if we have hard-boiled eggs in a salad, but I have eggs on the weekends when my husband and I have breakfast together. I struggled with how to have a high-protein breakfast with no eggs, but I am finding some combinations that work, like oatmeal made with chia seeds and walnuts or high-protein, high-fiber cereal with pecans and chia seeds (both with plenty of fresh fruit on top and almond or oat milk). I even tried a vegan egg substitute, Just Egg, that was OK. I may have that once a week as a scramble with veggies. 

Much as I hate restricting my diet so much, I did have a pretty good week GI-wise, with few problems (except for today when I ate the whey powder!). And, on the plus side, most of my sensitivities are mild, and nothing at all showed up under meats & poultry, grains & starches, beverages, or vegetables (and very little under fruits and herbs/spices).

Luckily, I can still eat all veggies!

I definitely recommend this kind of food sensitivity testing because I was completely unaware of most of these (and it was inexpensive, about $150).

For my son, discovering--through testing--that he was severely gluten-intolerant was a huge factor in his recent improvements, allowing him to work full-time now! It's really been amazing what a difference eliminating gluten made for him, in all aspects of his illnesses. He was quite resistant to the idea before, since many of his favorite foods have gluten, but now that he's seen the results, he's strictly gluten-free by choice.


Relapses and Recoveries

Just a reminder that my last update covered a list of treatments that helped me recover from multiple relapses, including a post-COVID relapse, and a list of lessons learned that are applicable to anyone with ME/CFS or long-COVID.

I also did a video update before my trip, an update on my relapse recovery, long-COVID recovery, and how I track my illness.

What We're Watching and Reading

Summer for me means Big Book Summer! This is a fun, low-key reading challenge I host every year, and this is its 10th anniversary! A Big Book is just any book with 400 or more pages, and any kind of book counts: middle-grade, audio, graphic novel, etc. And it's low-key because you set your own goals, whether that's reading one Big Book between May and September or two or setting aside a stack like I do, to choose from all summer long. It's still only July, so there's plenty of time left to sign up--all the details are at the link above.

Here's my June reading wrap-up, of the four Big Books (two in print and two on audio) I finished last month - all were very good!

My husband and I haven't been watching many movies lately, but as usual, we are enjoying a bunch of TV shows, even while on the road (the advantage of hotels over camping--WiFi!).

The Flight Attendant, based on the novel by Chris Bohjalian, on HBO is a fun, darkly humorous thriller starring Kaley Cuoco as a flight attendant whose life is a total mess. She's a party girl who drinks too much, and one night in Bangkok, she sleeps with a guy she really likes, who is dead in a bed filled with blood when she wakes up beside him the next morning! What follows is a fast-paced, deadly race to find the killer and save herself. Read my full review and watch the wonderful trailer at the link.

The other thriller (slightly less frantic) that we are enjoying is The Old Man, starring Jeff Bridges and John Lithgow. Bridges plays a former CIA agent who has been hiding out, living a quiet life for decades, when suddenly someone finds him and tries to kill him. He's prepared for this, but wasn't expecting it right now, so he goes on the run, reluctant to break ties with his adult daughter, though he knows that's how to keep her safe. This is a very twisty story, filled with old secrets, past histories, and plenty of action and suspense.

How about you? How are you doing this summer? 
And what have you been reading and watching? I'm always looking for recommendations!


Unknown said...

Hi; Glad you're home and doing well. I wanted to share a couple of things.
1st, I recently had a struggle with diarrhea and discovered it was two things: one, the Magnesium I take. Most forms can cause it. If you google it you'll find the ones that are least likely to do so. Since I stopped, no diarrhea!

2nd: Food sensitivities. I had this run many years ago and yes, the foods you eat a lot of will show a sensitivity. I don't think that it's credible. The food shows up simply because you eat a lot of it and not because you are really sensitive to it. Especially if it's showing a mild sensitivity.
I have to add that to some people, me... spending $150 on that is actually a lot of money. I certainly couldn't afford it.

Your next step to see if it is a real sensitivity and not just one that shows up just because you happen to eat a lot of the food is as follows: "The best tool we have to identify food sensitivities is a process of careful observation and experimentation. Removing certain foods believed to cause reactions from the diet for two to four weeks, reintroducing them one by one, and watching for symptoms is the current gold standard to pin down what may be causing symptoms...." From

Best wishes Sue!

Sue Jackson said...

Thanks for taking the time to comment and offer some suggestions!

Yes, I know all about the poorly absorbed forms of Magnesium - I am constantly telling other patients that!! So, all good on that front - my son and I both take Mg malate and Mg-l-threonate.

You are right about the cost of the test - I was thinking that as I was writing it! But much of the GI testing we've had done in past years was in the $500 range !! so compared to that $150 seemed reasonable to me. It's all relative.

I appreciate your thoughts on food sensitivities, too. I know all about elimination diets - went through that 18 years ago to discover the dairy problem! My GI symptoms have definitely improved since eliminating the stuff on the list, so I think it has some validity. I'm taking my Lyme specialist's advice, and trying to not eat the same stuff every day - and occasionally splurge on the stuff that showed up as sensitivity.

It's working well so far! Thanks again for sharing your knowledge and experience :)


Unknown said...

HI Sue, this was an interesting read. What you said about the food sensitivity testing was interesting, I've also experienced developing intolerances to certain foods due to frequent consumption. It was a struggle to readjust and find alternatives.
I'm glad that your sensitivities are quite mild and you don't have to go fully eliminate those things from your diet though!
My condolences to you and your husband for the passing of your father-in-law also.

Tasha Marie x

Sue Jackson said...

Thank you so much, Tasha Marie.

I'm glad my intolerances are mostly mild, too! I have to admit that since mostly avoiding those foods, my GI symptoms are better. Sorry to hear you have food intolerances, too - like we need something else to deal with, right?