Thursday, December 07, 2017

Throwback Thursday: Diet and ME/CFS & Lyme

For this week's Throwback Thursday, I am pulling together some of my past posts about diet, food, and food intolerances & allergies. This topic is important for anyone with a chronic illness but especially important for anyone with ME/CFS and tick infections, as we have in our house. We learned just how important only gradually, but in recent years, diet has played a big role in helping my son and I to feel better and be able to do more.

Food Intolerances
ME/CFS is an immune disorder, and the particular type of immune dysfunction in ME/CFS causes our immune systems to over-react to the presence of allergens. This means that it is very, very common for ME/CFS patients to suddenly develop food intolerances and allergies to foods they have never had trouble with before. In fact, food intolerances are often behind the gastointestinal symptoms that are an integral part of ME/CFS, and eliminating the problem foods can dramatically improve GI symptoms.

That's what happened with me. Before ME/CFS, I drank about a quart of milk a day and loved cheese, ice cream, and other dairy products. I was skeptical when Dr. Bell, one of the first ME/CFS experts who is now retired, suggested I give up dairy, I didn't think it would help, but I tried it for 2 weeks. I didn't see much difference, so I added dairy back into my diet - Wow! Instant cramping, gas, and other GI problems. I gave up dairy...and my GI symptoms went away completely.

A recent study done by Dr. Peter Rowe (another top ME/CFS expert) showed that a full 30% of the young people with ME/CFS in the study were dairy intolerant - and the number is likely the same in adults, thanks to our immune dysfunction. The study also showed a dramatic improvement in quality of life when those kids who were dairy intolerant gave up dairy.

Note that if you are lactose-intolerant (for me, it is both lactose and casein, the protein in milk), lactose is a common ingredient in many medications. The blog post at that link explains how to manage lactose intolerance generally and lists medications that contain lactose.

There have not been studies done on other common allergens, like gluten, soy, eggs, etc. in ME/CFS, but again, our immune dysfunction makes us prone to food intolerance and allergies, so it's a good idea to check with elimination diets.

Eating Paleo
In the last few years, my son and I have switched to a Paleo diet (with our own modifications), and it has definitely helped with ME/CFS, Lyme and other tick infections, and yeast overgrowth. Paleo basically means no grains, no dairy, no sugar. This blog post describes our approach to eating Paleo for immune disorders, with an explanation of why it's a good diet for patients with these diseases/conditions, how we manage it, and lots and lots of recipes and resources to help make it easier (and delicious!).

In addition to diet being essential in managing yeast overgrowth, diet is also very important in improving methylation, a critical step in improving both ME/CFS and tick infections. Several dietary components, including dairy, gluten, and gliadin, block one of the methylation pathways.

Finally, for details on how diet has helped my son and I improve over the years, see My ME/CFS Improvements in 2014 and How My Son Went From Couchbound to College.

How about you? Have you discovered any food intolerances or allergies? What kind of diet has helped your illness?


Jenni said...

ME gave me IBS symptoms which I mostly just coped with but which forced me to take anti-diarrhoea medications at least twice a month every month for about 2 years. I added 2 portions of live yoghurt a day and since then I have only had to take anti-diarrhoea medication once in the last year. I'm predominantly bed-bound so I also got constipated because gravity isn't able to help my gut transit. I increased my fruit and veggies to 7-10 portions a day (I only count them if they get chewed, so this doesn't include juice/smoothies/blended soup) and that helped with the constipation. Otherwise I just eat a healthy balanced diet including whole grains and pulses, which I know other people with ME avoid. I also eat fish at least twice a week and eat meat about once a week.
I know there are ME researchers who believe ME is a cluster of conditions under one label. So saying 'I have ME' is like saying 'I have a learning disability' - you then need to specify what kind in order to really understand what's going on. I wonder if the food intolerance-developing group of ME is a different sub-set to the one I have?

Sue Jackson said...

So glad you found something that helped you! Yes, probiotics are an extremely essential thing for anyone with ME/CFS. My son and I can't eat yogurt because of our dairy intolerance, but we take LOADS of high-quality probiotics every day, and they definitely help.

Glad you found a diet that works for you!

Giftbearer said...

I find that a few times a year my stomach gets really unsettled and I can't eat what I normally eat but it doesn't seem to be the same specific things all the time. Sometimes it's meat, other times it's vegetables, and sometimes everything I eat makes me sick, but it seems to come and go, so I really never can predict what to eat. Then it returns to normal and I can eat those things again.

Sue Jackson said...

Sounds tough when it's so hard to predict, but glad it only happens to you once in a while instead of all the time!

That's a less common occurrence so thanks for sharing your experiences!