<p>I was diagnosed at the end of June - just before our Europe vacation. It was a huge shock. I thought maybe I had an ulcer, went to a gastroenterologist for an endoscopy, but found out I had Celiac. For those who don’t know, it’s an autoimmune disease where the body sees gluten as an invader, and in response attacks the lining of the small intestine. This is where most of your absorption takes place, so Celiac can cause a lot of health problems due to malabsorption. It’s also linked to intestinal cancer, as well as other autoimmune diseases.</p>
<p>The only treatment is a strict gluten-free diet for life. Forever. I haven’t started the diet yet; I’m giving myself until August 1 to get my ducks in a row. There’s a local support group I have joined, I have an appointment with a nutritionist next week, and I’ve bought books and bookmarked lots of websites online.</p>
<p>Just wondered if anyone here has it, or has a family member with it.</p>
<p>I found out that the young woman I’m rooming with this fall has Celiac…you’ll be pleasantly surprised how knowledgeable (and supportive) the CC parents are!!</p>
<p>A little off-topic-my brother has Crohn’s, and had to have several inches of small intestine removed. He now has iron issues, because, as you said, this is where most absorption takes place. But he manages it well by taking supplements and going for Iron IV treatments once every few months. Take heart…it is manageable.</p>
<p>Hi oregonianmom, I was diagnosed about 6 years ago. Complete shock but the diagnosis was better than what I thought I had (colon cancer which runs in my family). When I found out all I had to do was stop eating gluten I was pretty happy. After 6 months all my symptoms were gone and bloodwork was normal (what caused me to be tested in the first place was no iron at all in my blood, none!!) </p>
<p>So after 6 years I have to tell you that living the gluten free diet is not easy. I have substituted bread and pasta for higher fat foods like cheese and meat and as a result have gained about 30 lbs. and have raised my cholestrol level significantly. So I am working to correct all that. </p>
<p>Please let me know if you have any questions about his disease at all. It is a terrible nuisance and at first I felt bad for myself not being able to eat certain foods, but then I realized that food is not what life is all about…</p>
<p>I had a Celiac scare a few months back—some tests showed that I had it, others didn’t, and results varied from doctor to doctor (I ended up seeing 5!). I still get some symptoms at completely random times, but the current prognosis is irritable bowel. They also thought at one point that I had gall bladder problems.</p>
<p>Back to your question, one of my best friends has Celiac’s and was diagnosed over Thanksgiving Break last fall. It took her a while to adjust but now she’s okay with the lifestyle. She still misses some foods (who wouldn’t!) and when we go out for dinner or something we have to be careful on restaurant selection. Oddly enough when we were in Chicago she was able to eat several slices of pizza with no reaction at all!! Usually she gets really sick if she eats pizza and we tried to tell her we didn’t have to go for pizza but she stuck it out for us and ended up not getting sick at all! I’ve learned more about Celiacs in the last 8 months than I ever thought possible and I learn a little more everytime we go out to eat or to a party—she can’t drink most beers!!</p>
<p>Around here there is an abundance of gluten free breads and pastas available at natural food stores. There are a number of tasty grains that are gluten free starting with rice. The hardest part is that gluten is snuck into some unexpected places - you’ll have to read labels for a while, but if you don’t use a lot of processed foods, it really isn’t that bad.</p>
<p>BTW, my husband has cut a lot of carbs out of his diet and is famous for just eating the toppings and cheese off pizza.</p>
<p>A friend of mine has it. She orders lots of gluten free products from amazon. There is free shipping if you spend $25, I think. Anyway, even though she has to buy in quantity, it is much cheaper than the health food stores. She says that she feels so much better that it is worth giving up the gluten.</p>
<p>The Outback restaurant group (Outback, Carraba’s, BoneFish Grill) have Gluten Free menus if you ask.
MIL was diagnosed a couple of years back. We were surprised by the amount of products available. She has always been a carboholic and she makes gluten-free pasta, breads and pancakes. Look for Bob’s Red Mill gluten-free products.</p>
<p>My 15 yr old was diagnosed with Celiac 4 years ago; the increase in availability of gluten-free foods has increased dramatically within that time period, but restaurants in our area have not kept up…Totally depends on where you live…If you have any questions, please PM me…many,many resources online as well as support blogs and travel sites…</p>
<p>The 1st year is the most difficult adjustment while you are figuring out what you like and brands that you prefer…</p>
<p>Addressing Cards4Life reply about your friend. If she truly has celiac disease she is playing with fire by not sticking to the gluten free diet. Just because she has no reaction to gluten does not mean it is safe… there is intestinal damage being done.</p>
<p>I had absolutely no classic symptoms i.e., the gastrointestinal type. But over the course of time, the gluten damaged my small intestine to a point where I was not absorbing any nutrients and this showed up in bloodwork, then in a biopsy.</p>
<p>Thanks for your replies. There is lots of information out there and I am gathering all that I can. It’s amazing to me that several people just on this website have it or have a child with it. I’ve read that the prevalence has increased, and that most people who have it don’t know it yet - especially since symptoms can be all over the map, from diarrhea and weight loss, to neurological symptoms like numbness & tingling in the hands and feet. Even depression.</p>
<p>My long-term boyfriend has severe Celiac’s, as does his sister. I am happy to answer questions in PMs, though obviously I am not a first-hand source.</p>
<p>Frankly, it can be very difficult, especially socially. He will no longer eat at restaurants that aren’t explicitly gluten-free accommodating, because it was like playing Russian roulette. I have seen him get gluten poisoning from eating fresh vegetables at a bbq that were sliced with a knife that some unknowing person had used to cut open a hot dog bun.</p>
<p>He started a website to keep track of gluten-free-accommodating restaurants in our area, many of which are national chains. [Boston</a> Celiac - Find Gluten Free Restaurants](<a href=“http://www.bostonceliac.com/]Boston”>http://www.bostonceliac.com/)</p>
<p>I can say from personal experience that at (Chinese restaurant chain) PF Chang’s, the flourless chocolate dome is one of the most delicious desserts that I’ve tasted, GF or not. :)</p>
<p>As others have said, Whole Foods is very good for GF grocery shopping.</p>
<p>I have a friend with celiac who copes well. She does a lot of gluten-free baking. But you do have to be careful about gluten sneaking into foods that you would not think would be a problem. For example, canned broth and bouillon, and soup bases and cubes often have yeast products. (My friend informed me that Better Than Bouillon does not, and as a plus it is significantly better than its competitors. ) There’s a lot of information out there these days.</p>
<p>oregonianmom, I am sorry to hear about your diagnosis. You may want to check out the Specific Carbohydrate Diet, which is gluten free and with which a friend of mine had great, great success when she was diagnosed with celiac and Crohn’s disease. [Main</a> template](<a href=“http://www.breakingtheviciouscycle.info/]Main”>http://www.breakingtheviciouscycle.info/)
The bible for this diet is a very simple book called “Breaking the Vicious Cycle.”</p>
<p>Thanks for posting that link jessiehl. I was aware of some of those restaurants but am surprised there are many others.</p>
<p>Also, for anyone in the Boston area that loves fried clams, there is a place in Essex, MA called Woodmans (very well known… they claim to have invented the fried clam)… all their fried seafood is gluten free using only cornmeal in their batter. The onion rings however are NOT gluten free but they are cooked separately from all the rest. Even their choweder is GF which most of the time will have flour in it.</p>
<p>A lot of product labeling is already in effect, particularly with the bigger brand manufacturers. But to be safe always read the ingredient list on anything you buy. </p>
<p>Good luck oregonianmom, after 6 months or so, it will be second nature to you. Feel free to ask any questions you may have.</p>
<p>Another thing about restaurants: Even at places that are GF-accommodating, every once in a while you get a clueless server or cook (possibly a new hire). Fortunately, they usually make it really obvious that they’ve screwed up (by including the bun on the hamburger, for example). But when they then take it back to fix it, you should always be suspicious if it comes back too quickly. The same clueless employee may have just taken the bun off and figured that it was fine, when in fact the burger is thoroughly contaminated.</p>
<p>The one thing I am really concerned about is eating out in restaurants - or even at other people’s homes. Like you said, jessiehl, it’s pretty easy to get “glutened” when someone uses a knife to cut a hot dog bun and then that same knife to slice your veggies. Or they use the same spatula to flip a burger and a bun. We all do these things without a thought. I have a nearly brand new BIG tub of natural peanut butter in the fridge. What does a person do with peanut butter? You dip the knife in, spread it on your bread, dip it in again (thereby contaminating the entire container), and spread some more on the bread. I obviously need new PB - and a whole new mindset.</p>
<p>We have an Outback restaurant just a few minutes from here, and a PF Chang’s not too far away. They both have GF menus. I’ll probably still be leery of cross-contamination though.</p>
<p>You may want to stick to the homes of people you know well who you know can be trusted to get it right. This may not be as limiting as you think. Good friends are generally willing to make arrangements with you beforehand - to tell you what ingredients they plan to use, and to listen to you about what brands are safe or not. I’ve noticed that people with their own major food restrictions, whether medical or ideological (like vegans), tend to be good at getting it right.</p>
<p>The way my boyfriend’s household solves the peanut butter problem is that he gets his own peanut butter, which he puts in a predetermined location separate from the other peanut butter (and with some of his GF stuff). Everyone in the house (he has three housemates) knows that that’s <em>his</em> peanut butter.</p>
<p>In all the times that we’ve gone to explicitly GF-accommodating restaurants together (probably once a week on average for the last year), I don’t recall him ever being poisoned. There were a couple of times where there were obvious mistakes of the sort that I mentioned earlier, and he had them sent back, and it worked out fine. Compare this to other restaurants (back when we ate at them together), where, even with his best efforts to avoid gluten, he got poisoned about a third of the time.</p>
<p>Be careful of sympathetic intolerances. As you may know, if you keep getting poisoned by products that also have a common innocuous ingredient (like eggs, milk, or soy), you can develop intolerances to the innocuous ingredient as well.</p>
<p>Judging by the information below from a celiac site, it seems extremely unlikely that simply using a knife on a piece of bread and then dipping it in peanut butter would cause a reaction in a person with celiac disease:</p>
<p>“The smallest amount of gluten which has been shown by a biopsy to cause damage to a celiac is 0.1 gram per day (Catassi et al.). This is approximately the amount of gluten contained in 1/48th of a slice of bread! The biopsies in this study showed an increase in intraepithelial lymphocyte count, one of the earliest signs of damage. The challenge was on 10 patients (children) for 28 days each. Four of the patients showed an increase in IgA antigliadin antibodies. The intestinal permeability test remained normal.”</p>
) There’s a lot of information out there these days.</p>