5 lessons I’ve learned from going dairy-free with fibromyalgia & chronic Lyme

This article was originally published on NationalPainReport.com and is being reprinted here with permission from the editor. 

5 lessons I've learned from going dairy-free with fibromyalgia and chronic Lyme | Fed Up with Fatigue

I’ve always said I will never starve as long as I have two things in my house: peanut butter and cheese. These have been dietary mainstays since I was a kid because they both have protein, they’re easy to grab and eat without any food prep, they’re comforting and they just taste good!

Unfortunately, my body has grown to hate both of them since I developed fibromyalgia and chronic Lyme. I gave up my beloved Skippy peanut butter last year after I became nauseous whenever I ate it.

But I held onto cheese for dear life until I started to suspect that it, too, was causing my symptoms to flare. My hunch was confirmed when I tested positive for a casein sensitivity. My doctor advised me to forgo all dairy, except products from goats and sheep.

Since my diet is already super limited (no gluten, soy, processed sugar, fast food, soda, etc.), I ignored her advice for more than a year until my body forced me to take action. Last month, with a sad heart, I downed a big chunk of cheddar cheese and a cup of soft serve from my favorite ice cream shop, then committed to giving up dairy for at least 30 days.

Here’s what I learned from my experiment.

Lesson #1: Dairy is addictive

Over the years, I’ve read articles about how dairy is addictive, but I never really believed it until I cut cheese out of my life. My withdrawal symptoms reminded me of all those times in my 30s when I had tried to quit smoking. Day 3 was always the hardest because that’s when my body really went into mega withdrawal, and my willpower would start to fade.

It was the same when I gave up dairy. On days 3-5, I was so grumpy I fantasized about smacking random soccer moms in Target. When my hubby would arrive home from work, I had to warn him not to talk to me because I might start throwing things at him. I felt like I could chew through roofing nails!

Thankfully, these feelings of anger and anxiety were short-lived. Once I got through the first week of my 30-day experiment, I didn’t have them anymore.

Lesson #2: Dairy is a problem food for me

Gut problems go with fibromyalgia and chronic Lyme like, well, cheese and crackers. It didn’t take long to realize dairy was obviously a culprit behind my daily stomach discomfort. From day 1, I had less bloating, gas and gastrointestinal pain. For the most part, my tummy troubles disappeared during my month of being dairy free. Huge win!

(Read: Why dairy might be causing your digestive distress)

Lesson #3: Dairy triggers my histamine response

The biggest reason I finally gave up dairy is that I’ve been dealing with a runny nose, watery eyes, excess mucous and facial flushing for the past 6 months. I was taking over-the-counter allergy medications to reduce my body’s histamine response and constantly toting a tissue around in my pocket.

I started to notice I needed to blow my nose and wipe my eyes a lot more after I ate moderate amounts of dairy. When I researched this, I learned cheese and some other dairy products are high histamine foods and can trigger the symptoms I was having.

Since giving up dairy, I’ve seen a reduction in my histamine reactions, but it wasn’t as great as I had hoped. I still have a tissue in my pocket; I just don’t use it as often.

Obviously there are still some offending foods in my diet, so my journey of figuring that out continues.

(Read: What is histamine intolerance?)

(Read: Could histamine intolerance be causing your symptoms?)

Lesson #4: Always read food labels, everytime, no matter what

I didn’t realize how many foods contain dairy until I was avoiding it. For example, I didn’t know my favorite brand of gluten-free crackers has milk. During another shopping trip, I was going to buy some cauliflower rice from the frozen food section, and you guessed it, it had dairy.

Reading food labels is a requirement when going dairy free (or doing any elimination diet). Thankfully, most food manufacturers list common food allergens (wheat, soy, nuts, etc.) at the end of their ingredient lists, so it’s not too hard to quickly spot dairy-containing foods. It’s just frustrating there are so many of them!

Lesson #5: I can’t ignore my dairy sensitivity anymore

Last night, I ate cheese for the first time since my 30-day experiment started. An hour after eating, I was nauseous. It took me another two hours to realize my nausea was likely a reaction to the cheese I’d eaten with dinner.

I have this same reaction when I eat gluten, so now dairy not only makes my tummy hurt and my nose run, but I feel sick when I eat it, too. Big sigh.

(Since I wrote this article, I’ve tried a couple of other forms of dairy, but it’s a no go. I either end up with nausea or severe stomach pain. Extra big sigh.)

(Read: 11 signs you may have a dairy sensitivity and what to do about it)

What I didn’t learn

I had expected giving up dairy would reduce my fibro/Lyme pain by lowering inflammation in my body, but I didn’t notice a change in symptoms other than reduced gastrointestinal and histamine issues.

That being said, I was going through a major flareup of a herniated disc in my back throughout April. That caused an increase in pain in general, so it’s possible that’s why I didn’t feel more of an improvement.

I’m recovering from back surgery now and am hopeful my overall symptoms may still improve.

(Read: 6 ways dairy leads to pain)

Update 6/25/18: As more time passes, I’ve concluded dairy does increase my pain levels. 🙁

What’s next?

I’m continuing the no-dairy experiment. I’m treating dairy like I do gluten and the other 5,000+ foods that I avoid (I’m only slightly exaggerating the number here). I’ll stay away from it 95% of the time, only indulging on special occasions.

I’m sad I won’t be able to nosh on cheese sticks or sprinkle parmesan on my marinara sauce. It sucks I’ll have to watch my hubby eat ice cream every night and won’t be able to steal a couple of spoonfuls from his bowl.

But my journey of healing Lyme and fibromyalgia is more important than any particular food group. I have to do what I have to do in order to get better even if that means sacrificing cheese and peanut butter. Maybe one day my body will stop warring with my food, and I’ll be able to enjoy a big, ooey-gooey slice of pizza again. Fingers crossed!

Now it’s your turn: Have you given up dairy? If so, what were your results? Share in the comments! 

You might also like…

How going gluten free may help with fibromyalgia

Several small studies link increased symptoms of fibromyalgia and gluten. Read about these studies and my own experience of going gluten free. | Fed Up with Fatigue


  1. I wonder how your pain levels are now. I can say that for me, I had a huge difference when I got off Dairy, my screaming and pain disappeared, and my fibro fog seem to clear up a good bit. Insofar as we gooey Pizza, I made a pizza crust with almond flour chia seed meal and sweet potato and a dairy-free cheese sauce using Daiya cheese. I’ve heard their pizzas are good and I know they are gluten and dairy free.

    • Donna Gregory/FedUpwithFatigue.com says

      As more time has passed, I’ve noticed I definitely respond negatively to dairy whenever I eat it. First comes the tummy problems, and then I’ll have an elevated amount of bodywide achiness for a few days afterwards. I think I can definitely link it to increased pain now.

  2. Cindy Fisher says

    Thank you Donna – I always benefit from your blog posts! I’ve been suspecting dairy as a culprit in my Burning Mouth Syndrome (I also have fibro/chronic fatigue). Haven’t been able to go 30 days without it yet, but that’s coming in the near future.

  3. Georgene says

    Great article. I’ve been dairy free (mostly) for nearly 5 years. The longer I’m DF the worse the symptoms are when I go off and the longer the symptoms last. I don’t experience stomach distress but joint and muscle pain. Soy causes hormonal fluctuations and joint pain, too. Sugar of course is horrible on my body. I’ve found alternatives to my old time favorites.

  4. Belinda says

    I was lucky to find Digest Gold by Enzymatica. Its enzyme are powerful in the digestion of fats, sugar,gluten, lactose and casein, among others. It costs between $25-$30 per month. Take one cap with each meal. I really only know it’s working when I forget to take it.

  5. This is really good. I just came out of a 2-Day Juice Cleanse, and I’m thinking I need to give up dairy and sugar. Part of me screams that this is not okay, but I think my body will thank me later. I appreciate your sharing your experience with going off dairy.

  6. Michelle says

    My two sons are vegan and they kept telling me to go vegan which includes dairy free. For years even before being diagnosed with fibro which was in 2010 I had had stomach problems which was diagnosed as IBS. When I gave up Dairy maybe 4 months ago I was amazed at how I was no longer doubled over in pain using the heating pad and many painkillers and started to actually use the bathroom like a normal human being instead of being in there several times a day. They say this is a milk allergy and my nasal allergies actually got better as well. Unfortunately the tearing of the eyes has not gotten better. But having better gastrointestinal issues… I’ll take it!

  7. Tamara says

    You may be able to have your cheese and eat it too! As a longtime FM sufferer I eventually developed the classic symptoms of IBS and starting w/ menopause they got much worse. Shortly thereafter I was diagnosed w/ an inflammatory arthritis called ankylosing spondylitis. Like all forms of inflammatory arthritis, gut issues are an overlap disease process up to an including the real bad stuff like Crohns and UC. One day recently my doctor turned me on to a probiotic that literally changed my gut life overnight. It’s available by prescription only and unfortunately not cheap- it’s called VSL3. I highly recommend anyone w/ chronic gut problems give it a try. Align is another brand that has a good reputation although I’ve never tried it (this one available OTC). I’m in awe of all of you who are able to make the massive changes in your diet that in turn makes you feel better. I’m unfortunately not disciplined enough to completely overhaul my diet even though I’ve seen it work for many others. I ended up by shear luck finding an easier way out, albeit more expensive by starting the VSL3. I’m truly shocked at how well it’s worked and wanted to pass this on in case it can be of help to others (I solidly believe this will be the case). Look up reviews on it and Align. I’m a RN, work in an area where I interact w/ gastroenterologists and have heard them recommend Align for years. As of 2 years ago I no longer work alongside this specialty but would not be one bit surprised to hear they’re recommending the VSL3 now too. All the best to feeling better!

    • Donna Gregory/FedUpwithFatigue.com says

      I’ve used VSL#3 in the past. It was recommended by my first Lyme doc. I didn’t notice any improvements in my health at the time, but I know it is a really good quality probiotic and seems to work well for some people. I’m currently using Daily Body Restore, which combines probiotics with digestive enzymes, and that definitely helps w/ my digestion. I take it with my meals.

  8. Marge Essink says

    Donna, three weeks ago I started the Plant Paradox program, low lectin eating in order to heal my gut. I have taken stomach acid blockers for 37 years so I need some major healing. I have given up all stomach blockers believe it or not. Using rolaids and now marshmallow root capsules and most of time my stomach is great.Never would have believed that. I have not experienced help with fibro symptoms yet, but this is going to take a while. I am very satisfied with this way of eating. My comment would be that high fat organic dairy, heavy cream, sour cream and cream cheese are fine. Dr Gundry says that holsteins are the most common dairy cow in the world. Dairy from European countries do not have casein1. There are lots of options at your local grocer.
    Donna, I have had fibro for 18 years. It was a gift that came with breast cancer. You are the only fibro person I follow anymore. Kudos to you for great blog and info.

    • Donna Gregory/FedUpwithFatigue.com says

      Thank you, Marge! I’m so glad you’re finding my blog helpful! I am familiar with the Plant Paradox program. I follow his videos on YouTube and am in one of the Facebook groups for the diet. It’s an interesting concept, and it sounds like it’s helping people from what I read in the group and your own testimony. Unfortunately I still react to things like heavy cream, sour cream, etc. 🙁

  9. Elizabeth Bolton says

    Thanks for this information and your experience. I, too, have many food restrictions and have been loathe to give up dairy once and for all. I’ve suspected it was addictive, and reading your story strengthens my belief, for sure! Now, to just summon up the will power to test this for myself… as you say….sigh…….

    • Donna Gregory/FedUpwithFatigue.com says

      Yeah, it’s so hard to give up yet another food group when you’ve already given up so many other things. Sometimes I think I’d like to just stop eating altogether. It would be less hassle that way, right?

      • Elizabeth Bolton says

        YES!! I do feel like that. Foods keep falling off the list of tolerable stuff. If I do give up the dairy, I will take notes of body changes and report back – I try not to make promises unless I KNOW I can keep them! Haa!!
        Thanks again for your very helpful blog. I do read it religiously, tho I comment infrequently.

  10. Jennifer says

    Great article Donna.
    I have Lyme and I have been told that dairy is a no no. I struggle with this because I love chocolate. I eat the kind sweetened with stevia. You have inspired me. I’m going to do it and drop the dairy.
    I am very sorry about your current condition. I’m praying for you Donna. Thank you for writing this for us. You are a very thoughtful and loving person. I look forward to reading your articles as they contain valuable information.

    • Donna Gregory/FedUpwithFatigue.com says

      Thank you for your kind words, Jennifer. Let me know how your own dairy free experiment goes – if it helps or not. I’m always curious about what others are doing.

  11. Jana Pendragon says

    Well done and well said! I believe the only ones who should be drinking cow’s milk are baby cows, calves. Humans have long found this food to be an issue, but have given up good health for the almighty dollar that the dairy industry generates. Allergies, serious histamine responses, digestive problems and issues as well as the possibility that for many dealing with autoimmune. the pain response is increased. This is just the tip of the iceberg. In this day and age there are options, and very good ones too. Seeking out more natural food products can and does help those dealing with chronic illness and, in some cases, healing can begin through a vegan diet. This is a conversation that should be continued as the evidence presented here is of great value to those of us who are already dairy-free and to those considering this path. Again I say, well done!

  12. Catherine Todd says

    Where can we find the recipe for “dairy free coconut ice cream with no sugar”? Link, please & thank you!

  13. Thanks for sharing your journey! I finally bit the bullet a year ago, eliminating gluten and most dairy products. Any time I challenge it, my pain, particularly headaches, flare. I came to a point where I liked less pain better than pizza 😜.

    • Donna Gregory/FedUpwithFatigue.com says

      I know exactly what you mean! I pay for it any time I have a cheat food. It’s not that I feel so much better eating this way – it’s that not eating this way causes me to feel worse. I don’t know if that makes sense or not.

  14. Hillary says

    I’ve been 95% dairy free for awhile now. I have Fibro, RA, and Microscopic Colitis. I don’t remember a reduction in pain but my gut pain, bloating, digestive unhappiness went away which was a huge improvement. I occasionally have Cheeze-It’s or sour cream on tacos. and can tolerate it OK as long as I don’t have ANY other dairy for the week. I tolerate Lactaid Milk in my coffee but the dairy-pills do not work. It’s so frustrating.

  15. Georgene says

    So Delicious has a dairy free coconut ice cream with no sugar. I also have a good homemade chocolate ice cream recipe if you’d like it.

    • Donna Gregory/FedUpwithFatigue.com says

      I like the So Delicious ice creams, too. Sure, I’d love your chocolate ice cream recipe!

      • Tracey ashley says

        I cannot eat any dairy specially cheese migraines milk tried goats milk bloating as well! Feedbacks tablets no good drink coconut milk almond etc, curved nearly only eat chicken lots of Vegas authenticates beetroot and mild curry spices! I think anti-inflammatory food helps lemon infringements helps completes and mint tea if the stomuth is a probkem, ca rob helps sprinkle powder your cereal or out in your drink hit it cold fingering moderation if you have a blood pressure heart oroblem!


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