Many people with ME/CFS are dairy intolerant – it’s our
immune system dysfunction that makes our bodies over-respond to viruses and
allergens. And if you’ve never even considered food intolerances, you should
because they are so common in those with ME/CFS, and finding the culprits can
greatly reduce GI symptoms.
In my case, I thought the very idea was ludicrous. I was 37
when I got ME/CFS and had lived my whole life without any food intolerances or
allergies (except an allergy to mollusks that I’d had my whole life) and
habitually drank 3 glasses of milk a day. But when Dr. Bell, a now-retired
doctor who was one of the top ME/CFS experts in the world, suggested I try
eliminating dairy from my diet for a few weeks, I reluctantly agreed. I was in
for a surprise.
I didn’t notice much difference in those first weeks, but
when I started to add dairy back into my diet, bam! My GI symptoms flared up
with a vengeance! Much as I hated to give up milk, cheese, and ice cream, I did
and was surprised to find that one simple step almost completely eliminated my
GI problems – excess gas, bloating, classic IBS-type alternating
constipation/diarrhea – all gone. That was more than 10 years ago, and over the
years I’ve learned that it’s best for me to avoid all dairy – when I start
“cheating” here and there, my symptoms start to return.
There are two common sources of dairy intolerance: lactose,
a sugar found in dairy products, and casein, a protein in diary products. If
your problem is only lactose, then over-the-counter products like Lact-Aid
(which supply the lactase enzyme your body is missing) can allow you to eat
dairy products without any problems. In my case, Lact-Aid helps a little bit
but doesn’t eliminate the symptoms completely, so I have guessed that both
lactose and casein are a problem for me. More recently, our dietician explained
that casein (along with gluten and gliadin in oats) blocks one of the
methylation pathways, and that provided another reason to avoid dairy.
So, I don’t eat dairy products, and I feel a lot better –
simple, right? Except that I discovered a stealthy source of lactose in my diet
that I never expected – many medications, both prescription and
over-the-counter – use lactose as a filler. It makes no sense to me – why on
earth would pharmaceutical companies use an “inert” filler that so many people
are intolerant to? But it’s true, and once I discovered this startling fact, I
began to find more and more medications containing lactose. You might think the
amount of lactose in a pill can’t be very much, so why worry about it, but if
you are very sensitive or you take multiple pills containing lactose, then it
does make a difference.
In some cases, there are alternatives that don’t contain
lactose; in other cases, there are no lactose-free options. But I have found
that eliminating as much of the lactose in medications as possible from my
lengthy list of medications has further helped to reduce my symptoms.
Here is a partial list of medications that contain lactose
and (where available) some lactose-free alternatives:
- All
birth control pills contain lactose, no exceptions (thankfully, these are
tiny pills).
- All
commercial Florinef (fludrocortisone), used to treat OI, contains lactose;
however, you can order lactose-free Florinef from a compounding pharmacy.
- OTC
Zyrtec and other antihistamine brands (Claritin, Zyzal, Allegra) white pills (for allergies) contain lactose, as do all the generic
equivalents; however, you can buy Zyrtec or generic gel caps with no lactose. Generally, for any OTC meds containing lactose, gel caps do not.
- Diflucan
(fluconazole), generic (antifungal) – some contain lactose and some don’t.
So far, we’ve discovered that those manufactured by Ivax contain lactose;
those manufactured by Greenstone do not.
- Trazodone
generic (used to treat sleep dysfunction in ME/CFS) – manufactured by
Qualitest contains lactose; those manufactured by Apotex do not.
- Doryx,
a new brand of doxycyline, does contain lactose; Monodox brand and certain
generic brands of doxycycline do not.
These are just the ones we’ve discovered! As you can see,
sometimes, it’s hard to tell because one brand will contain lactose and another
won’t and they may look very similar. So, what can you do?
For starters, call your pharmacy and tell them you are
lactose intolerant. Ask the pharmacist to review your entire list of
medications to check for lactose in them. I’ve found that they are usually
happy to do this and then they can put a note in your file for future
reference. However, you still need to remain vigilant yourself.
Many of those listed above that contain lactose, I
discovered when we received a refill from the pharmacy that simply looked
different than what we were used to – that’s how I first discovered that some
manufacturers use lactose while others – for the same medications – don’t. So,
if your pills ever look different than what you’re used to (after the
pharmacist has reviewed all your meds), that is a warning sign to call and ask
if the new version contains lactose. And if you get any medications from a
compounding pharmacy (like
low-dose naltrexone, for instance), be sure to
specify “no lactose filler” because they sometimes use it, too.
The way pills look can be a clue, though it’s not foolproof.
Typically, pills that contain lactose will be white tablets or caplets (or
white underneath and coated with a colored surface). Gel caps and capsules are
usually lactose-free. My Lyme doctor recommended a new brand of doxycycline
called Doryx that was supposed to be more effective (he had coupons from the
manufacturer so I could get it at low cost). I picked it up at the pharmacy and
knew right away that it probably had lactose in it – they were huge white
pills! I checked and confirmed they did contain lactose, and I switched back to
Monodox (that I also had a coupon for) – nice, safe capsules.
Finally, you can check for yourself online. Type the name of
your medication, the manufacturer, and the phrase “inactive ingredients” into
any search engine, and you’ll find pages that list all of the inert ingredients
in your pills, including lactose, if it’s there. For supplements, the list of inactive ingredients should be right on the label, though you can check online, too.
So, check out your list of medications, if you are lactose
intolerant (and if you aren’t sure if you are, then try a trial of dairy-free
diet for a few weeks). Talk to your pharmacist and be on the lookout for
lactose in all of your medications, both prescription and over-the-counter. It
can make a difference to your symptoms and overall well being!
Do you
know of other medications containing lactose that I haven’t mentioned here?
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