Celiac disease and issues with dairy

anorrisdyer

Ok, so here is the story-
Three years ago, I began having the worst pains and bloating under my right rib and down into my gut. At first, it wasn't that bad, just a lot of gas and weird poops, but after a few months, it just got worse and worse. It would be the worst a few hours after I ate, and really bad at night. At the time, I was eating a LOT of pizza, as a lot of college students do, and my husband and I didn't have any insurance, so I waited and waited to get it checked out. Finally, one night was so bad we almost went to the ER, but I was able to fall asleep and we went to walk-in-care the next morning. The FNP ran a whole bunch of blood tests and ordered an MRI on my abdomen, as she was sure it was something to do with my gallbladder, as I was eating a bunch of fatty foods every day. I had also gained like 20lbs in 6 months, so that was disconcerting. Everything came back normal, and she said my pancreas, gallbladder, liver, and appendix look extremely healthy, and except for a cholesterol that was a few points over, my blood work was fine. She called me later in the day, and instead of having me come in for another costly appointment, instructed me to completely eliminate dairy and gluten from my diet for two weeks and keep a food and symptom journal. I did as instructed, and it was the hardest thing I have ever done. My husband, not intentionally being a ****, would still eat pizza while I ate rice and chicken and had soymilk in my cereal. The milk was a big thing, as I don't like milk, but CHEESE.

Two weeks go by, and I am symptom free, and I have so much energy. I have dropped 15lbs and I am not as gassy and my poop is OK. I reintroduce dairy into my diet, to see if I can eat more cheese, lol. No symptoms return. The FNP says that she can't do a celiac sprue blood test without me eating gluten again, so she adds it to my file as a gluten sensitivity, and tells me to be careful and not eat gluten from now on.

Fast forward a few years, and now I have gained weight again, and I was having the same gas and bloating issues, but no pain in my sides. I also had been eating a LOT of cheese, so I cut back to a serving or two a day to help with my cholesterol. No more symptoms and my poop is looking OK again. I have also dropped 10lbs since limiting cheese intake.

If you have celiac, or know someone who does, do you also have trouble digesting dairy? I know that the two can go hand-in-hand. And, if you do have issues with dairy, does dairy cause the same symptoms as a glutening will?

One more, and this is gross, so bear with me: Do you have signs of malabsorption in you poo? Not solid, but not diarrhea, ragged pieces with food not fully digested, etc. Mucus in stool, multiple poops a day?

Also, I have NOT been diagnosed with celiac, because eating it is so painful, but would it be worth getting the tests done in the end? WEEKS of intestinal damage seems like it could be worse than just not knowing, you know? And most doctors won't do a biopsy to test your intestines without a few blood tests.

shaumom

I have celiac disease, and so do three generations of folks in my family now, so I'm coming from this as someone who has a lot of folks around me with the disease. :-)

Okay, so, first of all - I'm so sorry that that doctor was such an utter and complete idiot about going gluten free. Any doctors who know about celiac disease (which are few and far between, sadly) have you get tested FIRST, and THEN go gluten free, for exactly this reason, you know? And most people I know of who go gluten free first and feel so much better choose not to damage themselves AGAIN just to get a test so they know to eat how they were eating already in the first place. :-P

That said, the second reason this doctor is an idiot? Celiac disease needs more than simply 'not eating gluten.' Because if a celiac simply 'goes gluten free,' then they often get exactly what is happening now: they get better, and then they start getting worse again. For some, it happens over a few weeks, some it's over a few years.

Basically, what seems to be the problem is this.
When you eliminated the gluten, the body got a huge boost by not having to react all the time. However, if you don't eliminate gluten AND gluten contamination, then your body will continue to have low level damage, all the time. This damage will build up over time and start to cause more problems the worse it gets. Weight gain (or loss), malabsorption, bloating, nausea, fatigue, all sorts of things - bizarrely, a lot of celiacs report that AFTER they go gluten free, their reaction to gluten changes. No idea why, at this point.

However, what may apply in your case is that one of the problems that develops from increased damage from celiac disease can be lactose intolerance because the damage from celiac disease ALSO damages the part of the intestines that make the enzyme, lactase, that you need to digest lactose. So many celiacs are lactose intolerant if the damage gets too bad. Fun, eh?

A good place to ask about avoiding gluten contamination is celiac.com, on the forums. It involves not sharing certain cooking equipment that can't be cleaned well enough to keep contamination out (has to be scrubbed, and wood and plastic will actually absorb proteins into them and can release it back into liquid - if it can stain, it can absorb proteins - and so any wooden spoons, plastic spoons, and so on need to ONLY be used on the gluten free food), avoiding makeup and other items containing gluten that might get on your lips and therefore your stomach. And so on.


Re: testing. IMO, no, it's not worth testing. What would happen is this, in all likelihood: you would go back on gluten. You would get very sick. They would do a blood test and potentially a biopsy. Then they would tell you to go gluten free, send you to a nutritionist to show you how to go gluten free, if you're lucky, and that's it. They do not do ANYTYHING more for celiac disease than you're doing now, except potentially leveling up the amount of gluten you avoid. There aren't any medications for celiac disease or anything - it's still just the diet, simply a more severe one. Sometimes, you'll get some more vitamins to take.

Another reason I personally wouldn't get tested is because - while doctors don't say this, and many don't even seem aware - going back on gluten for a while, as a celiac, is NOT risk free. Some people don't have much problem. But I know one little girl whose immune system completely tanked doing this and she had to be isolated. She's not alone in this. I know a few whose body never seemed to be able to recover and they were diagnosed with refractory celiac disease (which never heals, basically) afterward. I know a few who developed SERIOUS reactions to gluten once they've gone gluten free and tried to start it up again, like seizures, severe intestinal bleeding, just some nasty stuff.

This is NOT to say this is going to happen to everyone, or even most. But doctors have no way to predict how you, personally, will react, so you need to weight the risks and benefits, you know? And knowing that there's nothing else TO do for celiac disease other than get more strict on the diet, many of us choose not to get tested again (I lucked out and got tested first, before going gluten free).

Another reason not to test is that people are working on ways to test for celiac disease WITHOUT having to damage your body to do it. They already have one way, but it's really invasive, expensive, and there's only a couple labs in the country that do it - they take a biopsy, keep it alive, and then test the BIOPSY's response to gluten that they apply to it. Very hard to do, I understand.

It seems, however, that the inside of the cheek will react to gluten if it's injected, if you are a celiac, so I know there are some tests being researched to see if that can be used. So I think within maybe 10 years or less, there WILL be tests you can take and get diagnosed, if you wish.

If you go completely gluten free, and avoid gluten contamination, and you are still sick - I'd go to a GI doctor, because something else could be going on, you know?


Oh, and one last thing - which doctors also almost never mention - if you DO have celiac disease, and it sounds like it's a possibility, even if you don't know, excerpts recommend getting ALL close family tested (blood test) for celiac disease ASAP, whether or not they have symptoms. This is because the disease can trigger at any age, AND can do damage for years before symptoms show up. If the tests are negative, there is such a high chance they'll eventually develop it, that experts recommend getting tested again every 2-5 years.

My father wasn't told this when he was diagnosed. Since then, as we all slowly got sick, every family member has been tested, and all but one of us turned out to have it. It's seriously worth getting any siblings, parents, or kids tested for this, with the suspicion you might have it, you know?

Wishing you good luck, and hope you feel better soon!