This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I just had my biopsy today and had the same experience. They gave me the demerol and versed and I was out until the recovery room; I remember nothing of the procedure itself. The rest of the afternoon post-procedure is somewhat hazy, but I do remember most of it.
Frankly the most uncomfortable part was the procedure room was cold and I was wearing a skimpy gown, so I was freezing until the nurse brought me a blanket (without me having to ask).
Interesting timing - I just got back from an appointment with a new GI doc. He recommended that I do the gluten challenge - I cringed and asked how long I'd need to eat gluten for (I've been gluten-free for 8 months or so now). He surprised me with "4 weeks". He said the biopsy examination is getting sensitive enough that you don't need the 3-6 months of eating gluten as in the past. Of course that probably depends on the lab, what process they're using, etc, so the doc performing your biopsy would know the "how long" best.
As for how much gluten each day, he wouldn't give me a straight answer on that. He said to just eat a "normal, healthy diet", i.e whatever the food pyramid for grains would recommend. He did caution me against going hog-wild with all the gluten-filled foods that I've missed, like pizza, cake, donuts, etc. I'm a junk food junkie so of course that was my first thought.
Sorry for the delay in the followup. I was moderately optimistic that I could find *something* there, and hoped that since the cooks are right there you could ask questions and get reasonable answers. However, my experience was not so good and I got glutened worse than I've let happen in months. (I say "let happen" because at this point I feel like I know when food is a risk and am choosing to eat it anyway).
I ate four things - rotisserie (sp?) chicken, a cheese/hash brown dish, mashed potatoes, and mint chocolate chip ice cream with chrushed M&Ms. I hoped that the chicken would be gluten-free if I avoided the skin - there was a seasoning on there that I was suspicious of. The cook for the area with the chicken didn't speak english, so I couldn't get much info from him. I really need to get bilingual dining cards.
The area with the cheese/hash browns had a very nice (though very busy) cook who said it was simply cheese, shredded potatos, and then ham or vegetables, no flour or seasonings.
The mashed potatoes seemed to have butter in them, but otherwise umolested. I only ate a spoonful.
Generally I don't have problems with ice cream or M&M's, so I figured that was safe.
So, somewhere in there I got gluten. Potatoes sometimes give me a little problem, but not like I've suffered for several days afterwards. My guess is that it was the chicken or something in the cheesy hash browns.
It's a shame, because they do have a wide variety of foods and you'd think with the cooks so accessible you could get good info or maybe a custom cooked dish, but I think they just focus on volume and don't have time. And for the money ($67 for four people, including sodas for each) it is WAY too expensive. For that money we all could have had a steak at Outback, where I'm almost certain to avoid gluten.
Has anyone eaten at Cinzetti's italian restaurant with good results? They have one north of Denver and apparently one in Kansas. I've eaten there before I was diagnosed and now have to go for a family function (not my choice where to go). I'm going either way and may just nibble on risotto or something, but would love to hear if someone managed to get a gluten-free meal there. It's buffet/open kitchen style, so I'm hoping to convince a chef to cook me something without sauce and seasoning.
Definitely give it a go and make diet adjustments as needed. I did BFL for 9 months or so and got into fantastic shape despite my regular cheating on diet. I also did not take any supplements. I think the real key is the frequent smaller meals and the exercise program. I think the diet would not be sustainable over a long time (years), but I think stick close to it to start (with gluten-free/cf adjustments) and make changes for taste after you see some results.
Of course, when I weighed myself this morning I wistfully noted that I am currently 41 pounds heavier than my best weight on BFL. Job change (lost my gym), health issues, and just plain laziness got me to where I am today, but if you stick with it can be a lifelong plan. A coworker of mine has been doing it for 4+ years and is still in great shape.
I purchased Gluten Guard last week and thought I'd share my experience so far. I also purchased a PocketPC (Dell Axmin) and the SDIO bar code scanner at the same time. Please bear in mind that I'm a computer geek and a bit of gadget nut, so I might be willing to put more effort into these things than some people.
- Nice screen, 640x480 vs the 320x240 that some PocketPC's come with
- has CF and SDIO slots that can be used simultaneously
- has 256 meg "static" ram where GG can be installed, so I haven't needed a Compact Flash card yet
- comes with Windows Mobile 5.0, includes Word Mobile or something like that
SDIO Bar Code Scanner
- this is the exact one supported by GG
- install software, plug it in, generally just works - except with GG. More on that below
I purchased GG from celiac.com, because I like supporting people who provide free resources like this web site. That does add a small complication to the support process, becuase if you email the GG people directly they say to email Scott first, and then he forwards the question on to them, and then they reply. But, the one question I've had so far did get answered, though it took a little longer than it might have if I bought from the GG people directly.
GG has a simple interface - if you have a scanner, you hit scan (with the stylus), aim it at the product, and it reads it. If you don't have a scanner, you bring up a software keypad and enter the UPC code with the stylus. Either way, once entered it searches the database for a match. If there is one it gives you green, yellow, or red; if not, it tells you. Found or not, you can enter a note.
For yellow or red items, you can ask for details on why the product gets that status. This is nice because you can make a judgement call, especially for the yellow items, on whether or not to buy the product. As they say, it's not 100% accurate. So by looking at the exact reasoning you can make an informed decision. It can also educate you about ingredients that you may not know contain gluten (yellow or caramel coloring, for example).
It's definitely not 100% accurate though. One example is disodium X, where X could be guanylate, inosinate, or Wheat Germamido. From what I can tell both from internet searches and a gluten-free soup can label, the first two are OK and the third contains gluten. GG flags anything that contains any disodium though - erring on the side of caution. I guess that's better than saying gluten is OK, but it underscores that this is really a tool to help you make decisions - not the definitive resource that we might hope for.
About the bar code problem I alluded to: I cannot get the bar code scanner to work with GG. It works great with other PocketPC apps, but when I use it with GG it always comes up with one of two products, even when the number being scanned is a valid product in the database. Windows Mobile5 and the 640x480 resolution are not listed as supported by GG though, so this could be a case where GG needs to be updated for the latest OS. I have not yet contacted GG about this, so it could be something else too. I can't complain too much about this because I knowingly bought something aside from the exact supported configuration. If you really need the bar code scanner to work, I'd buy the exact supported configuration on GG's web site.
Another downside to GG - the product database seems pretty small. I'd guess that I got less than 1 in 5 hits for items I was scanning for purchase. And I don't mean silly things like pastas, breads, or cookies. I mean processed foods and soups that may or may not contain gluten, where a product like GG would be really handy. So it really is more of a helpful tool than a replacement for complete awareness of what ingredients you can and cannot eat.
And that really brings up the question - is it worth it? Since there are so many foods that won't be in the database, you'll need to know your ingredients and call companies anyway. If you get in the habit of doing that, should you spend the $80-120 for a partial solution? Especially when the new labelling regulations help identify gluten? That's a decision that only you can make.
Overall I do like having a small computer that can take shopping. I'll probably give the Clan software a try too, after my credit cards digest this purchase. Since Windows Mobile can run Word, I think I can also get the Delphi lists in there easily. There is also some cooking/recipe software for PocketPC, and that would be nice while shopping. So a PocketPC looks to be a very helpful shopping tool, with or without GG.
I use Sonne's #7 (bentonite) and #9 (psyllium fiber) when I get glutened. Helps to deal with the big D. Before I realized I had gluten issues, I actually used it a lot and decided I need to look into what's really wrong if I'm using that stuff daily.
Now that I've read the ingredients (www.sonnes.com), I wonder if psyllium is gluten-free? I'm so paranoid these days...anyway, it works (or helps, anyway) for me.
York finally got back to me. The woman on the phone was very nice, said they have had a lot of orders and are still waiting on test kits to come from England. She said they would call when the kit came in and shipped (guessed 1-2 weeks).
I agree with Debbie, I don't necessarily mind that somethings take a little while to get in stock (we've all been spoiled by Amazon!), but good communication of the situation is important.
I ordered the Entero test on the same day as the York test, I'm guessing I'll get the results from that back before I even get the York test!
I've been trying to be gluten-free since last fall, with varying success. After Christmas I really cranked up my efforts and became more disciplined and careful about what I ate. Yet, I've still had a few very bad days.
My current daily gluten-free meals incorporate rice, meat that I've cooked, and sometimes eggs. I do miss my snack foods though, which used to be things like cookies or multigrain chips. So, I've been eating more potato and corn chips (known to be gluten-free). A few times I've cooked gluten-free cornbread too. This is all in the past three weeks.
I haven't been keeping a diary, but I've realized that my bad days over the past three weeks correlate to the days when I've had corn chips or cornbread. Days with potato chips don't seem as bad, but aren't really good either. So I think I've learned that in addition to gluten problems, I may have corn and/or nightshade problems. I'm going to do this week completely corn & nightshade free and see how it goes.
Clearly if you're eating popcorn to feel better you probably don't have corn problems, but perhaps you have another food issue (in addition to gluten) that you didn't realize before. Maybe take another look at that seasoning and the gluten-free cake mix to see if there are any other potential problem foods in there - nightshade, soy, etc.
Has anyone gotten anything out York Labs in the past few weeks? I ordered the cdScan in December and haven't gotten it yet - they charged my CC the day of the order. This is the home testing kit, all they have to do is put it in a box and send it to me.
I've called a few times over the past week and each time was told that the computers were down and they'd have to take my number and call me back. They never do. One time the woman even said, "I'm only the book-keeper and nobody else is here". I emailed a few days ago and haven't heard anything from that either.
Are they still functioning? Fighting off bankrupcy?
The celiac disease/gluten-free thing is new to me. I've had digestive issues of varying severity for a good 15 years, was diagnosed IBA about 6 years ago but never had any luck with it (doctors are pretty much useless, IMHO). This past year has been as bad as any and finally a few months ago someone suggested I try to go gluten-free and see if that helps. It does tremendously, but I've been having a hard time getting good gluten-free food, so I've started reading this forum to find things/places I can eat. It's been a great help.
I also found out about the Entero test from this forum, I've ordered the test and am looking forward to finding out what it says. I also ordered the York cdScan, since I like multiple tests to compare.
If you know of a good Boulder area celiac disease support group, I'm all ears.