How is Celiac Disease affecting your life?

I have a new doctor who suspects my diagnosis of IBS was wrong, lo those many years ago. They are running blood tests for Celiac Disease.

I don’t know that much about coping with it and am trying to learn just how freaked out I should be at the prospect. I should find out within the week if I have a positive blood test (and if I do, I think the next step would be a further biopsy).

Celiac sufferers, how’s things?

I don’t have it, but my daughter does. (Well, we think she does. We didn’t get her tested and now she’s been gluten free, so we’d have to put her back onto gluten to test, and we’re not willing to make her sick to get an official diagnosis. Symptomatically, she’s sick when she eats wheat/rye/barley and not sick when she doesn’t. Good enough for me.)

First thing to know - those tests are not good. A whole lot of people who are gluten intolerant (that is, have symptoms when they eat gluten and don’t when they don’t) show up negative on the tests for Celiac Disease. False positives, on the other hand, are pretty rare. So if you test positive, well, now you know and you cut out gluten. If you test negative…well…you just don’t know. It might still be worth cutting out gluten from your diet and seeing if the symptoms subside.

Actually, being gluten free is a lot easier than an IBS diet, IMHO. (Of course, it’s possible to have both Celiac’s AND IBS, which would really suck!) There are so many good gluten free alternatives these days, it’s not really the deprivation it was in the past.

Here’s a list of ingredients which may contain gluten. It looks overwhelming today, but you’ll learn pretty quick that a bunch of them really aren’t in many things, and there’s only about a dozen things you’ve really got to watch out for.

My personal recommendations for good gluten free foods:
Udi’s bread. Most gluten free bread is just awful. Udi’s is good. Their muffins and other things are great, too.
Betty Crocker cake and brownie mixes. Very good, and quite a bit cheaper than specialty brands. Some Betty Crocker’s frostings are also gluten free, although they’re only labeled as such in tiny letters on the side, not blazoned on the front. Again, cheaper than what you’ll find in the specialty aisle.
Schar pastas. Some of the best. Whole Foods own gluten free brand of pasta is pretty good, too. We prefer the corn pasta to the rice ones, with the exception of rice noodles you can find in the Asian section.
Glutino pretzels. Yum! Taste just like pretzels, and dip into chocolate really well. :wink: Oh, and my daughter just added that Glutino’s cheese flavored crackers are her favorite gluten free crackers.
Kinnikinnick’s K-Too sandwich cookies. Almost exactly like Oreos. is a great website for articles, information and forums.

I actually hope, for your sake, that it is gluten intolerance/Celiac instead of IBS. The great thing about Celiac is that, once you’re off gluten, you really are symptom free. There are no “flare-ups” like IBS, unless you inadvertently eat gluten.

Off to make some gluten free cupcakes now. We make a big batch and freeze 'em, so she’s always got some to take to school or birthday parties. If I think of anything else that might be useful, I’ll be back. :slight_smile:

Yeah, I was wondering if after the massive upheaval of dietary change I might actually end up glad to be dealing with something a bit more straightforward than IBS. But my symptoms do flare and subside, flare and subside. That seems wrong for Celiac, though I’m no expert.

You’re a whole lot better off these days than people (in the US) were maybe 10 years ago, if that is your diagnosis. Back then, you’d confuse almost everyone if you said “gluten-free.” These days, you have those people who think that humans shouldn’t be eating wheat and that going gluten-free cures everything, but at least there are more resources out there, from books to Internet discussion boards to gluten-free products in many standard grocery stores. I learned about it because my boss and his daughter were dealing with that diagnosis.

Your worst pitfalls might be restaurants and people who don’t really want to put in the effort to do something carefully made for you, and will lie about it. I say this as a vegetarian who’s been fed meat-containing things by jerks before. Since not carefully watching gluten intake can up the risk of colon cancer for someone with celiac disease, you might be more successful at getting people to take you seriously.

My daughter’s obvious symptoms flared and subsided for about a year before we really nailed it down. By the time I tried gluten free, she’d been eating nothing but (wheat) crackers, (wheat) bread, and (wheat) noodles for a week under doctor’s orders to treat her “tummy bug”. On THAT diet, her symptoms were unrelenting!

Other, more insidious symptoms common in children are delayed growth and susceptibility to infections, and those we wrote off as a result of her prematurity. She grew a bunch and isn’t sick as much anymore now that she’s gluten free.

Adults with Celiac’s can either be unremitting or flare and subside types. Some can even eat a small amount of gluten without visible effects, although it’s unknown if damage is still happening to their intestines, so it’s recommended that they be gluten free, not low gluten, even if low gluten takes care of the obvious symptoms.

I’m not officially diagnosed either, but it isn’t that hard to eat GF (I eat more Gluten Lite than GF - I don’t worry about soy sauce, for instance). Its EXPENSIVE to use substitutes, so I tend to avoid them for the most part, preferring foods that just start without wheat. Like making lettuce wraps instead of sandwiches (although Udi’s bread is great). Skipping pancakes for breakfast and going for eggs (although I’m a huge pancake fan - Pamelas is a good mix for the splurges). I don’t need the cookies and cake on my waist (and a small bit of chocolate is GF and fills my sweet need). You’ll get used to the appropriate shortcuts pretty fast - its harder for a kid since they have so much baked goods in their lives.

I have control over pretty much everything I eat (putting aside the required trust in food labelling), so not a big deal for me. Pretty sure I’m one of the ones who wouldn’t have noticeable side effects of gluten intake anyway.

Lots of normal foods don’t have gluten, you just need to be disciplined in reading the labels. However things like breakfast cereal, you’ll probably need a specialist gluten free variety.

Bread is a bit of a pain, I use a gluten-free bread mix. Not much chop as bread, but OK as toast.

Chex has a few certified gluten free options now (not, obviously, their Wheat and Multi-Grain, but the others). Also, many of the mass market rice and corn based cereals are gluten free by ingredients - although they’re not certified against cross-contamination. And you’ve got to watch out for barley malt and barley color.

You’d think so, but I found most of them inexplicably had wheat or barley in them… perhaps to pad them out. I settled on a couple of GF varieties, after sampling a few rather bland offerings. A little more expensive but tasty enough.

I have IBS (had, really - I’m rarely symptomatic since I changed my diet), and tested negative for celiac, but I’ve done elimination diets several times and get the worst indigestion and other side-effects (it gives me the feeling of a bad blood sugar ‘crash’ with fuzzy head and exhaustion within the hour for instance) from wheat consumption. So, I don’t eat it. I don’t really eat any grains, except for white rice, because most of them bother me to a lesser extent. So I don’t usually eat ‘gluten-free’ processed grain products. They are rather expensive anyway.

In my life my digestion and health has taken many turns for the better and worse, but it’s never been good. Absolute worst was when I was an adult (and things had been degenerating more steadily for several years), and eating vegetarian while working at an Italian restaurant…

I don’t find not eating wheat a hardship - I really would like to eat cake and pasta, but I get to eat a ton of other delicious foods and I have a system now for making sure I’m not ever stranded and tempted by wheat. But it was a big change and takes planning. I can’t afford to eat out much and I don’t go to social events often so that part is relatively easy for me.

I don’t make a big deal about my eating habits or talk about gluten-free, wheat sensitivity, celiac, etc - I just say I used to have a lot of digestive problems/IBS and now I have to eat very carefully to keep it under control (and that doesn’t include bread, pizza, most fried foods, etc). People accept it without a murmur.

I cook a lot and eat eggs, butter, cream, cheese, meats, seafood, vegetables (making sure not to overdo the fiber), a little fruit (too much/certain kinds are a trigger for me), some nuts/nut butters, and potatoes, sweet potatoes and white rice as my starch sources.

I feel and look so much healthier than I did just a couple years ago, it’s really incredible. I am finally putting on and keeping on some weight, for first time since I was three years old I’m nearly at a ‘normal’ BMI. That speaks for itself I think…

I tested negative. I’m both relieved and disappointed. Relieved for obvious reasons, I think, and disappointed because it might have made things easier to handle if I knew with certainty what to avoid.

Oh well. Good luck to everyone struggling with this issue. I’m glad there are so many more options and more awareness now.

Be glad you tested negative. You can still eat real pizza.

I’ve been GF for over six years now. It’s gotten easier as more restaurants have become aware but for a couple of years, when I ate out it was either going to be enchiladas or the salad bar. After a while, I stopped craving a lot of wheat foods.

I learned that avoiding the “substitute” food was a much better way to go rather than eat heavy, grainy brownies and fake pizza. BTW, Udi’s sucks IMO. Instead I learned to enjoy rice dishes, substitute lots of onion and peppers for noodles in spaghetti and eat my eggs with potatoes. I actually eat much healthier now than I used to and it’s not usually difficult to say “no” when a coworker brings treats to work.

I just keep a couple of fruit & nut bars at my desk and one in my bag as backups in case I get stuck at an event where everything is wheat, such as my niece’s graduation party. Everyone was munching on pasta and cake. I felt quite virtuous with my fruit and nut bar dinner by comparison. :slight_smile:

It may be, JSGoddess, that you are negative for celiac disease, but still have gluten intolerance. GI is much more difficult to diagnose. You have to first test negative for celiac, then get an endoscopy while you are still on a wheat-included diet. The gastroenterologist will look for signs of gluten damage - usually changes in the color of the lining of the small intestine, scalloping of the lining, and from biopsies, damage to the villi.

I have plenty to reason to believe that I’m gluten intolerant at this point. If I give in to the cravings and eat something with wheat, I will, within the next 36 hours, experience any or all of the following:

  • migraine
  • depression with suicidal ideation
  • stomach pain
  • diarrhea
  • exhaustion
  • joint and muscle aches

I’m really stupid about it, too. I last just long enough for the memory of the last bout to fade a bit and tell myself it really wasn’t that bad. I’ll eat something with gluten - sourdough bread and chocolate chip cookies are my downfall - and I’ll get hit again, like clockwork. It can take up to a week for me to feel normal again.

Since it would take two weeks eating gluten regularly for the endoscopy to do any good, and because my insurance probably wouldn’t cover it, I haven’t gone for a definitive diagnosis. I just try to stay on the straight and narrow. I’ve also told my mom that she never gets to eat chocolate chip cookies in front of me again.

True confessions. I fall into this trap too.

I forget, get a big craving or just get in a situation where gluten is the only thing on offer (in a volunteer job I do, every meal or snack is gluten) and I get hungry. I am sure to end up with a backache, migraine, sore joints and/or loose bowels to remind me why I should stay away.

But six weeks later, I’m at another 3-day volunteer gig and there are cookies and… :eek:

My aunt suddenly came down with celiac disease after a bout of food poisoning at age around 70. Several years ago she became violently ill after having crab salad at a friends. Turns out the firend had used diet mayonnaise and that has gluten as a thickener. Be warned.

I have tried making her pasta salad (one of my specialties that she had always loved) with rice noodles. Awful. Finally, I tried making it subbing cooked rice for the pasta and it wasn’t too bad. She really misses bagels and, at Passover, matzohbrei. Aside from that, she has adjusted well.

Udi’s does make bagels. I’ve never tried them.

I use cooked brown rice and wild rice instead of breadcrumbs in meatloaf. Delicious.

People usually don’t come down with Celiac disease; they are either born with it or it slowly develops. However, people can quickly become gluten intolerant, sometimes only temporarily so. What the Japanese call “leaky gut syndrome” or what we call intestinal yeast overgrowth can cause gluten intolerance, so can chemotherapy.

One of my top debaters has Celiac, so I’ve become much more aware of what is offered at the various eateries the team dines at. I try hard to find places where her options aren’t “salad or starve.” Luckily, the team digs BBQ, so ribs and slaw are still an option.

Places that serve all-day breakfast and seafood are good choices. Seafood often comes with things like rice pilaf and an omelet with hashbrowns instead of toast works.

Man, I miss toast. A few months back, I discovered that Rudi’s makes a gluten-free cinnamon raisin bread. I ate four pieces as fast as I could toast them.

You can also try an elimination diet. It may not be wheat (but it still may be wheat even without a positive test), but it might be lactose or white sugar or tomatoes or god only knows what.

I have been tested to find out what is the cause of my anemia. My hemoglobin count is 111. I am not low on iron, B12 or have any internal bleeding. A biopsy showed flattened villi and the blood test results were that I did not have Celiacs Disease. The Doctor said the biopsy is the gold standard and is ignoring the blood test results. He told me to go gluten free. I started eating gluten free on July 25th. I will have another biopsy done in May 2013 to see if eating gluten free has unflattened the villi. I have severe osteoporisis and eating gluten free may build up my bones too.