Should I worry about Celiac disease?

April 19, 2007 8:09 PM

How dangerous is Celiac disease? What can I do?

A few years ago my sister randomly underwent a study for Celiac at university and we found out that my sister, I, and my dad all have it. Sis no longer eats gluten, but I do (I tried it for a while, but didn't know *much* difference).

My question is, how much danger am I putting myself into? As for symptoms, the only thing I notice are stomach aches (mostly at night, feels like gas, but doesn't go away quickly-- any ideas?).

I know many of you will post links to info (and thanks!), but I could've just googled that stuff... Any personal info? Serious advice?

How about progress with the disease? Part of me says... just ignore it-- *they* will find a cure before I suffer any big problems later down the line...

Last idea for you-- what can I do to reduce symptoms without cutting out all gluten? Any way to avoid these night-time stomach aches?

Thanks guys!

posted by phaedrus441 to health & fitness (14 comments total)

why not try cutting out gluten for a while and see how it works? if it proves to be just too durn impossible, then decide what compromises you're willing to make. i don't know if they're worth the risk, though. (like diabetics with candy.)

there's a good food blog with recipes and resources here: http://glutenfreegirl.blogspot.com/
posted by thinkingwoman at 8:35 PM on April 19, 2007

Well, it can be very serious in some people. My aunt has celiac disease and while it went undiagnosed she was very sick. She was dangerously thin and had anemia. The other problem is that she wasn't absorbing any nutrients, so that leads to problems like osteoperosis. For her, it was definately worth it to give up wheat gluten, if not easy.

For a long time, I also thought I had celiac disease. I had all the symptoms and a family history and a blood test so I was misdiagnosed. After awhile not eating wheat gluten became second nature, and I was touched by the effort friends and family put into helping me. You'll find that you don't have to give up anything you love if your willing to bake. My boyfriend and I even made wheat-free bagels.

I would recommend two things: 1) See a nutritionist, prefarably one that has experience with celiacs and 2) there are a lot of good cook books for celiacs. You'll find recipes for just about everything. The only thing I think that's really difficult to recreate in wheat-free form is pizza.

As for your tummy, you'll never feel better until you stop eating gluten. But getting lots of fiber in your diet (raw veggies) may help some.
posted by bananafish at 8:39 PM on April 19, 2007

The lab I work in has a Phd student working on the causes of celiac disease. So the info I am about to give will be gleaned from the conversations I have had for her.. but it is by no means authoratrive.

The test for celiacs involves looking for the presence of an antibody that reacts and stimulates an immune response against gluten peptides. This is what cause many patients to feel sick after eating gluten

But

It is important to note that some people can test positive for celiac disease, yet be asymptomatic.

These people will live normal long lives eating gluten and be none the wiser. It seems to me that you are more in this boat: your symptoms seem comparatively mild and you would never have known you had the disease unless you were a part of the study

so I guess my first bit of advice is.. dont panic!!

From my understanding there is no disease 'progression'. Celiac doesn't 'lead' to anything more serious - beyond perhaps an increase or decrease of the symptom's severity.

Bear in mind there are people who have very severe symptoms. These people have to be constantly mindful of what they eat or else risk being quite ill.

You, however, are not one of these people. So thinkingwoman has it right. Cut down on the gluten if you think it might help with your night-time stomach cramps. but apart from that... relax... you will be fine

email me in the profile if you have any more questions.
posted by TheOtherGuy at 8:49 PM on April 19, 2007

From my understanding there is no disease 'progression'. Celiac doesn't 'lead' to anything more serious - beyond perhaps an increase or decrease of the symptom's severity.

Are you sure about that? I thought that untreated, asymptomatic celiac disease put one at higher risk for nasty things like stomach cancer.
posted by craichead at 9:03 PM on April 19, 2007

Yeah I could have worded that better..

My take on what the submitter was asking was that can he expect his symptoms (presently mild to non-existent) can get worse over time. this is not necessarily the case... they might.. they might not.

Like everything in medicine, the presence of the agent might alter his risk profiles for other diseases.
posted by TheOtherGuy at 9:14 PM on April 19, 2007

According to the Coeliac Society of Australia, the long-term consequences may include:

Chronic poor health, osteoporosis due to calcium malabsorption, infertility, miscarriages, depression, dental enamel defects and an increased risk of gastrointestinal and oesophageal carcinoma. In fact it has been stated that undiagnosed coeliac disease can affect any organ or system of the body.

Osteoporosis and the risk of cancer jump out as two risks you might not want to run.

My cousin was diagnosed with the disease when she was quite young. She spent some time in hospital before it was diagnosed, but has been perfectly healthy since moving to a gluten free diet.

I've been fairly conscious of the need to cater for gluten-free people since then. I've noticed that gluten-free foods are increasingly available in mainstream shops, and gluten-free recipes are easier to find now.

I'd recommend contacting a local equivalent of the Coeliac Society. I know my aunt has found them very helpful -- they provide a shopping guide, recipe books, and general advice on how to keep up the diet. I'm sure they have had many people approach them with reservations about cutting out all wheat from their diet, especially as growing awareness of the disease has led to more adult diagnoses in recent years.

I've also heard that they are developing a medication that will allow gluten-intolerant people to eat wheat. Basically, you will be able to take this tablet and eat wheat that day. It is not designed for constant use, though, and I'm not sure how far advanced it is -- I vaguely remember that they were running a trial, but I can't be certain.
posted by robcorr at 9:25 PM on April 19, 2007

I've found an article on the tablet, which is called AT-1001. The human trials are progressing well, with no apparent side effects. Here's what the researchers say about it:

Rather than a complete alternative to a gluten-free diet, it does however seem more likely that the "pill" will either play a supplementary role to the diet, e.g. to reduce the damaging effects of occasional "dietary sins" (as an "emergency pill"), or a preventative role in the event of potential coeliac disease cases.

posted by robcorr at 9:31 PM on April 19, 2007

My partner has Celiac disease and as a result we eat a gluten-free diet.

If he eats any wheat, he gets very tired and will sleep for a good 18-24 hours.

He didn't learn about his condition until he was a couple years into college and was a regular visitor at the health clinic for fatigue.

At one point before diagnosis, he was injecting himself with B12 — damage to the small intestine from the reaction to gluten prevents fat-soluble vitamin absorption, which in turn results in classic displays of vitamin deficiency.

He was also rather short and small-framed. Once he removed gluten, he grew over a foot in six months.

Your symptoms may vary, but damage to your small intestine can accumulate and become irreversable. Best to remove gluten from your diet for now.

Feel free to contact me if you have questions about ingredients and recipes. I've got a ton.
posted by Blazecock Pileon at 9:45 PM on April 19, 2007 [1 favorite]

I don't have celiac disease but I love The Gluten Free Goddess' recipes.
posted by like_neon at 12:41 AM on April 20, 2007

Celiac disease (and other digestive issues) runs in our family. I'm not old enough to have developed any issues myself yet, but I've seen what it can do. My father has celiac disease and it has almost ruined his life.

He is in almost constant agony with his stomach and despite being prescribed about a zillion things from the doctors and specialists nothing has helped. He has tried the gluten free diet but found it so unappealing he has always given up after a few weeks saying he'd rather die than "eat that shit". It's just because he is old and cannot change his ways. It will probably kill him soon. It doesn't help that he has always been a fresh bread fanatic and the gluten free stuff really isn't anywhere near as good (I've tried quite a lot of them myself!).

So.. if I had any advice to give.. it's to build up enough tolerance mentally to be able to deal with this should it get that far for you. I'm thinking ahead for my own benefit so I can build up the right mindset that I can change my diet as soon as something goes wrong (if it does). That is, I don't make food an important part of my life anymore, so I am not overly attached to any particular items in case I need to give them up.
posted by wackybrit at 4:41 AM on April 20, 2007

Wow, these are great comments... Thanks all!
posted by phaedrus441 at 7:52 AM on April 20, 2007

Ditto to what people said above... Celiac can still be damaging AND asymptomatic (read: anemia, malabsorbtion, etc), so try gluten free for a while... Also, hot tip -- Tinkyada (rice) pasta is really great -- in any type of sauce, texture is spot on. We've made rice pasta lasagna, it was awesome.

We're (my doctor and I) are still trying to figure out what the hell is up with my stomach, but based on my family history My brother has Crohns (pretty bad) and my Mom has celiac (pretty mild)..., I probably have mild gluten intolerance like you (cramps, diarrhea, bloating/gas, etc) -- but also a possible case of Crohn's disease, also mild... sometimes my symptoms are so bad I can't work out or eat, but I have weeks where things are pretty calm/peaceful. Also, I don't seem to be able to eat dairy, so you may also want to experiment and see if dairy may be causing your gas/bloating... Anyway, good luck.
posted by wonderwisdom at 8:26 AM on April 20, 2007

Can I pile on and ask if the blood test is now widely accepted as a means of diagnosis? I was under the impression that the gold standard for diagnosis was still, scope, diet, rescope. My mother-in-law recently had a doctor tell her that she was "positive for 2 factors out of 4" for celiac. This was a blood test she was referring to. Any idea what this actually means? (We suspect our toddler may have celiac, and this would mean we now have a family history.)
posted by peep at 9:35 AM on April 20, 2007

My best advice is for you to join the yahoo group, SillyYaks. The people there have a wealth of information to provide.

After 4 years of diarrea (several times daily), a friend suggested that gluten could be my problem. I researched it & saw a GI specialist. Other health conditions prevented me from getting the biopsy done, but I started the gluten-free diet and found that my symptoms disappeared within a week or so. I was also having other issues which disappeared with the gluten-free diet--migraines, extreme fatigue, and acid reflux. There are over 200 symptoms that can be attributed to gluten intolerance. As I look back over my life, I can see things now that may have been a result of this issue.

Even if you don't see any symptoms, your body is still treating the gluten as a toxin, which will, if left untreated, lead to other problems. Personally, knowing that I can reduce my risk of intestinal cancer is enough for me to do it. And, honestly, the donuts & cookies that the people bring to work aren't even a temptation anymore because I know how horrible I feel when I eat gluten. I know this isn't your case, but continuing to eat gluten may make your body more sensitive to it later.

If you're not willing to cut out gluten, try taking more fiber and experiment with the times of the day you are eating the gluten. You may find that you can eat the gluten before noon and not have problems at night...it's hard to know unless you try. Rolaids helped me, but that was more with the acid reflux. You could try Pepcid OTC.

The person who mentioned dairy could be right, too. Often, Celiacs can't tolerate dairy products. Milk that is "in" food doesn't really seem to bother me, but drinking a straight glass of milk or eating a bowl of ice cream isn't a good idea. Yogert & cheese are fine for me, but too much "processed" cheese aren't.

Good luck with whatever decision you make!
posted by Mrs. Smith at 6:42 AM on April 23, 2007