After about 3 months of being on the gluten free diet, I slowly started to feel better. A few months after that, I started to have debilitating pains and bloating and wondering if I was consuming small amounts of gluten. After cutting out restaurants and being vigilant about avoiding cross contamination, my boyfriend (a GP) mentioned that it might be lactose intolerance and suggested that I try taking Lactaid pills before I consume dairy.
Milk. Lactose intolerance and Celiac disease?
I took them, and it worked. For a few months anyways. I started to worry about what that could mean – had I developed a dairy allergy? Why would my newly developed lactose intolerance increase as I healed from the damage to my intestines? From what I’ve read, it’s really the other way around.
I’ve done some research since then and based on my findings, I’m pretty sure I’m only lactose intolerant and not allergic to dairy (I’m crossing my fingers!) So this morning, I tried “lactose removed” milk and voila – no pains or bloating! I’m going to continue to drink that with my cereal and tea for the month, and cut back on my other dairy intake and see how I’m feeling. Apparently things like yogurt and hard cheese contain less lactose than milk, so I’m hoping it’s only milk that I’ll have to cut out! We’ll see..
What are your experiences with lactose intolerance and celiac disease? Did you develop an intolerance? Did it improve or get worse? I’m interested to hear about it!
Here’s what Celiac.com had to say about the link between lactose intolerance and celiac disease:
How is lactose intolerance related to celiac disease?
Lactose intolerance is frequently a side effect of celiac disease. Celiacs who eat gluten become lactose intolerant after the villi and microvilli in their small intestine become damaged, and are no longer capable of catching and breaking down the lactose molecule. The problem usually disappears when celiacs remove gluten from their diet, which allows the damaged villi and microvilli to grow back. Lactose intolerance symptoms can continue for a long time after a celiac has gone on a 100% gluten-free diet. In some cases the villi and microvilli damage can take up to two years to heal completely, but in most cases it takes between six months and a year. Most people who are lactose intolerant can usually eat goat and sheep (feta) cheeses without any problems.
I also found this quote on the Tri-County Celiac Support Group website:
Lactose Intolerance: If you recently found you have Celiac Disease, you are likely to also have lactose intolerance (inability to digest milk sugar). Fortunately, for most people, this will clear up after 2-12 months on a gluten-free diet.
For lactose intolerance, talk to your doctor or registered dietitian about recommended diet. Many people can still eat yogurt and hard cheeses but have to limit the milk in the diet. Others with sever lactose intolerance need to eliminate all foods, supplements and medications that contain lactose.
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If you have any thoughts or links to additional resources regarding lactose intolerance and Celiac disease, please feel free to leave them in the comments below!
The Lazy GF Chef 
So true! It’s so weird that 50% (yes, about 50%!!!) of Celiacs have a problem with dairy and most people don’t talk about it or even know about it!
I experienced a slight relief when I went gluten free but then still had a lot of symptoms – symptoms that I now know are specific to dairy. It was also eye opening to me that you can have an issue with lactose but also casein – the protein in milk (which I do). That really narrows down the dairy substitutes you can have.
Thanks for talking about this really important issue!
I’m casein intolerant as well as being gluten intolerant, so I avoid all dairy for that reason. A lot of people in my family are lactose intolerant, but I wonder how much of it is really the casein for them.
Jess – I’ve heard that figure – that 50% of Celiacs are also lactose intolerant, which is surprising – I wish the dietician had told me that when I went for a “you’re Celiac, now what to do about it” talk. Good to know though, I think I’ll do some more research into it… And casein too – how did you figure that out? Did you do one of those scary sounding elimination diets?
Sally and Jess, can you ladies have goat’s milk, or is casein in all milk?? Like you wonder about your family and casein, I also wonder about my family and Celiac disease – none of them have gotten tested for it, ever. I sent them the literature, about the increased probability of one of the at least, having Celiac disease, but they said “they don’t have symptoms” and “even if I did, I wouldn’t want to know..” Eek!
I’m going to really try to pay attention to my reactions to dairy over the next month, and hopefully I’ll be able to figure out if it’s an intolerance, an allergy, or something with casein.. So I’ll be doing more reading on the subject!!
Thanks for sharing your experiences!!
Interesting. My brother is lactose intolerant, as well as my dad, but both are very mildly intolerant. I might have to test out if I am as well.
If you can use lactaid and have no symptoms, then the
most likely thing is that it is just lactose intolerance. That
means it will go away when the tips of the villi grow back.
If you still have symptoms even with lactaid, then it is more
likely to be casein intolerance. As far as I know, the milk
from goats will also have casein, but in lower amounts.
The protein is slightly different, but it’s not uncommon to
cross-react if you have a casein intolerance for cow’s milk.
So it may be okay for a while, and then you start reacting.
My daughter used the lactaid and it worked for her, so she
was able to have milk again. I however am casein intolerant,
so I use rice or potato milk (Vance’s Dairy Free).
Thanks for the insight, Kathy! I think I’ve realized that I’m definitely lactose intolerant and allergic to dairy or casein. I’ve started using lactose-removed milk, and I’ll take a Lactaid pill when I have dairy. Ice cream is the worst. Cheese and yogurt don’t seem to be as bad though.
I discovered my other problem, which I think was compounded by my lactose intolerance – heart burn. To my knowledge, I had only experience “heart burn” a few times before. But after describing all my symptoms, my bf, who is a doctor said “you’re probably just getting heart burn.” After more research I discovered – bingo – that’s exactly what I’m having! Now that I’m taking a prescription strength acid reflux medication, things have improved. A lot.
I wondered why I only felt the pain of heart burn once I was on a gluten free diet, but I think that maybe I had it all along. Pre-diagnosis in March 2009, I felt everything possible in my stomach and just knew something was wrong. Heart burn I’m sure had to do with that! I’m sure it’s all tied in to intestinal damage due to gluten. So much to learn!!