celiac3270

I found that Columbia University has a Celiac Disease Center.

Definitely do that -- Columbia has a whole program w/ celiac drs........the new doc. I'm going to tomorrow is affiliated w/ that program....try it.

I've been about 5 months on the diet -- and my abdominal pains are still coming -- ugg.......I thought it'd be 1-3 months at the beginning, then I read how it can take some people a year........ick......I'm going to a new, more knowledgable doctor to discuss the possibility of SIBO..........(small intestine bacterial overgrowth)......actually, my appt. is tomorrow........I hate feeling sick.....it's been 6 years pre-diet (since I was 7 years-old) and nearly 1/2 year on diet....this stinks.......I just wanna feel normal; and by now I've forgotten what normal even feels like.

Oh, by the way, Molly is right -- one mistake does not set back all your progress.......after all, if it did, you'd only need to eat a tiny bit of gluten before a biopsy. No, it takes at least a steady month of gluten to knock you back to square one...don't worry about that.

-celiac3270

JOSEPHS GLUTEN FREE BAKERY IN BROOKLYN HAS THE BEST gluten-free baked products! oh my god they are so delicious!!!!@!!!!!!!!!!!!!!!!!!!!!!!

I've heard so much about that bakery -- and though I'm only a subway ride away, I've never been there!....never really bothered to go I know I should, but I haven't.

There is a restaurant in Manhattan called "Jean-Georges." It is at the Trump Hotel at One Central Park West. It is a very expensive restaurant but they are very accomodating to people with Celiac Disease. When I went to eat their, I told the waiter that I was allergic to dairy and gluten and he asked if I had Celiac Disease and I said yes and then he called over the maitre'de who took my order and the chef prepared all of these delicious entrees with sauces and everything was gluten free. However, for dessert the only gluten free items are fruit and sorbet.

That's terrific that you had a great experience there!

I would start eationg mucho gluten now just to make sure

I concur.........you're lucky not to have been gluten-free for a longer period of time. Lyndsey (on the board) was gluten-free for......something like 3 months before finding out she needed a biopsy. If you continue eating gluten-free, you might test negative for celiac disease, even if you really have it. Three weeks isn't long enough for your gluten levels to go down a lot, but every week gluten-free makes a difference, so start eating gluten to be safe.

your intestines will have probably healed a lot.

I doubt that they will have healed THAT much in three weeks.....they will have started to heal, but not a lot.

-celiac3270

I'd definitely buy a new collander. The holes in it are easy sources of contamination -- easy sources to pick up some gluten that gets lodged there and doesn't wash away.

Obviously, it can only help to use separate containers. It isn't too expensive to replace old plastic containers with new ones and it might be a good idea. I know a lot of people who are strict about cooking utensils and pots, but not as crazy about segregated containers........so I'm not saying it is essential, just a good idea.

-celiac3270

Failure to thrive is a definite sign of celiac disease. The fact that you have two other common symptoms: stomach pains and diarrhea, makes it seem even more likely. celiac disease is often misdiagnosed as IBS, so that history of "IBS" could actually be a history of Celiac Disease. I think you might have it, and it seems likely that your daughter has it. A wheat "allergy" that doesn't show up in blood results as an "allergy" makes me think it might be gluten intolerance. Finally, an on and off, not strict, gluten-free diet will not necessarily help your symptoms. Therefore, to see any results you should be strictly adhering to it for an extended period of time. The negative bloodresults confuse me, but try bloodwork again, and if you want, run your own sort of test at home.....strict adherance to the diet....and see if she shows improvement

How old is Gabby? If she's old enough to like homemade Choc. chip cookies, I just found the BEST ones....better than the old wheat kind of homemade cookies. If she's just starting solid foods, there's an arrowroot cookie made by Mi-Del....it's not my favorite; nowhere near the same league as my chocolate chip cookies , but something that's rather bland, etc....the kind of simple cookies, you might start a child on, I guess......I eat them when I'm not feeling well. How about chips? Frito-Lay, as I'm sure you know, has an extensive gluten-free list. The foods I listed may not be the healthiest , but as you're desparate to get her to eat anything, it might be good to try foods that she'd find really tasty.....

"Less than 2% of the following" does mean less than 2% of each item, not the total amount. Also, modified food starch could contain wheat, so make sure you've called the company.

-celiac3270

Thank you for telling me how you tested for these things...it was interesting to read. I will discuss all this at my appt.

Those are excellent suggestions. I know what you mean about being able to push out the gas. When I am at work, after lunch, I sneak into the boardroom, lay down on the floor, first on my right side for a few minutes, then my left side for a few minutes, then on my stomach for a few minutes and then on by back for a few minutes. I can literally feel the bubbles moving through my system. And of course, it is a good thing I am alone in there!!! I feel that helps immensely. If I didn't do that, I wouldn't be able to sit at my desk for the afternoon due to the pain.

I don't have experience with really bad gas like that, but would it help to cut your lunch short by a few minutes so that you can go for a walk......walking is supposed to sorta dislodge the gas.

About a week ago a celiac friend let me try some ABSOLUTELY terrific choc. chip cookies -- better than anything you buy in a box and actually better than the old gluten-containing cookies you might make at home. I'm not a crazed cookie person, but I keep eating these constantly. I usually heat them up in the microwave so that the chips melt in and the whole thing is hot and soft. They actually come from a mix: Arrowhead Mills Wheat Free Chocolate Chip Cookie Mix (it also says on the box that it's made with non-gluten ingredients). They only need to bake for 8-10 min., really fast to prepare, and delicious. A little advice for anybody who'll try this: when you place the cookie sheet (lightly greased) make sure that you make very small clumps of the "dough" that are taller than they are wide. The cookies will spread out a lot when they bake so if you make them a normal size and height, they'll end up all spreading together and being rather thin (still good, but not as pretty). Somebody who misses cookies, please try this.....these are so much better than any other gluten-free cookie I've had (and I thought Pamela's cookies were good.... ).

-celiac3270

You could also bring some of your own food in..........I've done that before -- and if they complain, you can explain in elaborate terms what would happen to you if you ate normal stuff and tell them about the intestinal wreckage and the fact that you're technically disabled because of the disease .

What to bring....chips, I guess, although, I just thought of something. They might have them there, anyway. If you go inside from the seat area into the hallway they often have counters where you can purchase food....usually more food options: nachos, fries, hotdogs, beer, soda.....who knows...they might have gluten-free chips there like Lays. If not, you could bring your own.

No reaction -- no sickness -- no abdominal pains -- formed stools -- nothing. I doubt that it's the casein/lactose/dairy.......wouldn't it have hit me by now? It doesn't take days, does it? Anyway, I think it's SIBO still. But could I have some soy allergy? Cause it seems like a lot of gluten-free products contain soy and maybe I didn't have much before and got sick cause of gluten, now I get sick cause of soy....I don't know.............SIBO or soy is what I'm thinking at this point.

mmm...someone brought up cheesecake as a least favorite: that's probably my favorite dessert -- it's just I haven't had it since diagnosis.

Jill also triggered my memory on coconut....yuck.....I agree.....

I said this under my bacterial overgrowth topic (post-diagnosis section), but I'm gonna show that article to my new celiac dr....I'm making a list of symptoms, explanations, and that article. Thanks again.

-celiac3270

Sue (burdee), I know that you've suggested that I might have casein or lactose intolerance. Therefore, today I did a little experiment. The last time I ate a Hershey's Bar (a few months ago), I got sick after -- it might have been dairy after just going gluten-free. I know Hershey's are gluten-free, so that's not the issue. Anyway, I thought that if I have another bar and get sick, it might be casein or lactose intolerance. If I didn't, bacterial overgrowth would be my guess. I ate it at 3:40 (two of them, actually). The first ingredient is sugar, the next is milk, so there's a lot in it. I will post later...probably tomorrow, with the results of my experiment. I might bring up soy......never really thought of it, but who knows.

On other things, I am so psyched that I'll be going to that new doctor soon. Anyway, I'm planning on getting really organized with this so I'll be able to sort of fill him in on what happened through the first five months. I'm gonna have a page or so to describe my symptoms and summarize symptoms/diet for the past five months. I'll include my dairy test , etc. I'm also going to print the article that Karen posted here. There's one on Celiac.com, but this is a little more detailed. So, I'll have my little packet of info. Of course, I'll also talk about it, but I'm really excited to maybe be solving the problem. I can't wait to feel normal.....I feel so much more optimistic going to a doctor who knows about celiac disease...yay!

Just wanted to update. As for the book, I'm gonna see what happens with the new doctor. If I find that nothing seems to work, I might read that. I'm so excited! I've always hated doctor's appts.....so this is a first

-celiac3270

You're doing damage whether you feel it or not......trace amounts affect everyone, it's just some will show visible symptoms (getting sick) and others won't.....you still have to be concerned with cross-contamination

1) 3 favorite desserts: hmmm.....brownies, choc. pudding.......most things chocolately, it appears. Oh, before limiting dairy, I used to periodically eat an entire tub of icing (the cream cheese kind of Duncan Heinz...sp?).....mmmm

2) Hmm...I don't really have something I dislike, but I guess I don't really understand the big deal about cake. I'm not a big fan of ice cream, but vanilla ice cream is good on hot brownies

3) I live with 3 people (a brother and parents)

4) Regularly eat with.....breakfast is often alone, lunch usually with 1-2 other people (during the summer, but when school is in session it's with 10 other kids at a table and 80 others in a lunchroom), and dinner with 2 or 3.

5) Home cooked because I don't trust restaurants, but also because I've never been a fan of restaurants.....I like my mom's cooking

6) I live in NYC and I don't know the exact conversions.......anyway, it would all depend on the quality of the product. One point to make, though: you can charge a lot more for gluten-free foods and it'll be "reasonable" to the consumer, simply because nearly all gluten-free foods not made by mainstream brands (such as Lays) are expensive. So you can raise your price -- maybe even double it from what you'd charge for the regular, gluten-containing food.

Hope this is helpful

-celiac3270

I also haven't reacted when I've eaten gluten by accident but I don't doubt I have it. It nearly killed me. Literally.

Richard, you've said before that celiac disease nearly killed you. How so? Were you malnourished to the extent that it almost killed you? Thanks.

Personally, I find the CSA nearly useless. They were even opposed to the recently passed allergy ingredient bill.

Wow.....that stinks....why the hell wouldn't they want this allergy bill? I don't get it.........

Perfect......that's similar to the article on celiac.com, but a little more detailed, which is good. Anyway, I think I have SIBO since I still have symptoms and I know that I'm SO cautious about foods, contamination, everything! I bet I have this, like I've said before. Thanks for the article

-celiac3270

Hi Karen,

My mother said the same thing to me the other day...I don't know whether to pick out the crumbs or invest in a new toaster... 

New toaster......it's not too expensive, but it'll make a big difference.

I know you mentioned that you drink alot of kool aid, and wanted to cut your sugar intake. Crystal light if gluten free, and sugar free. And it comes in a variety of flavors, that might be a good alternative. Also, check out those Toronto gluten-free stores from the Toronto section for gluten-free soy sauce.

Crystal Light is great....I called Kraft awhile ago and it's fine. I don't know if it's sugar free, but it's gluten-free and really good. I drink it all the time. I like the strawberry kiwi the most, but their lemonade and pink lemonade are good also. You might want to check the sugar, but it's gluten-free and I really like it.

I still think that you are just one of those symptom-less celiacs......I doubt that it's wrong and biopsies are as accurate as tests get....if you're convinced, you can have a different doctor run the tests or get a different lab for bloodwork....I don't think you were misdiagnosed, but if you do, you retest for it.

-celiac3270

Gas-X Chewable Tablets!!!!!!!

I eat those things like candy because of the severe intestinal gas and bloating that I have......

I have just confirmed with their 1-888 number that both the Chewable Tablets and the Softgels have gluten containing starch in them!!!!!

I have been giving myself a steady dose all along!!

I still am starting from scratch, and cutting EVERYTHING out but at least now I know there was a definitive source contanimating me...... I am still getting my own toasters for both work and home, and getting exclusive frying pans for my gluten-free pancakes. My husband cooks breakfast on the weekends and what he was doing was cooking my gluten-free pancakes first and then cooking the kids ones after. But it is a teflon frying pan. So now I am going to get my own exclusive gluten-free pan. Same goes for utensils, can opener, etc.

I am starting to feel sooooo relieved that I truly believe now that it is not refractory celiac, but contamination instead.....

Karen

Yay! That is absolutely terrific! You mentioned not being careful about contamination, finding out a soy sauce you were using wasn't gluten-free, and now this! I am 100% sure now that this wasn't refractory sprue, but rather, a misdiagnosis by your GI due to a steady gluten intake all along....you found it!

I was actually going to write you back later today and suggest that you start from scratch -- start with meat, potatoes, fruits, and veggies, and call everyone, rebuild your diet. I'm glad that you've already decided to do this. Buying a toaster is the first step to de-contaminating your kitchen. Remember never to put a gluten-free food straight on the counter, even if the counter should be gluten-free. There's a great risk of contamination with that. Also, don't put a gluten-free food directly onto the revolving surface thing in the microwave.....another source of contamination.

A few more tips for an entirely gluten-free diet: be careful of makeup (eyeliner and lipstick in particular), toothpastes (you said you checked), medicine, vitamins, play dough (though I doubt you have a lot of that around ), some glues, licking stamps, and licking envelopes. Of course, get a new gluten-free pot, frying pan (as you mentioned), and some basic cooking utensils: whisk, spatula, wooden spoon, etc.

I had a big list of things to watch out w/ cross-contamination. I'm not posting from home, so I can't access the word document, but you might want to search for it if you want some tips --- I didn't even know about all the things in it.....some of the precautions were crazy, but you'd probably get something out of it.

Good luck....I am convinced it's not RS.......you just weren't 100% gluten-free...

-celiac3270

Wow....from early twenties to 41 years old....20 years of symptoms....and I'm fed up with 7 years of symptoms (6-13 years).

The only hope I am holding out for is that I have recently discovered (through researching) that there are two things that I have continued taking that I just recently found out were gluten-free. One was Clamato Juice, (I loved my Bloody Caesar on the weekends, after a long week at work, it's a Canadian thing, eh? The other is teriyaki and soy sauces that I didn't know had gluten in them. And since rice is the thing I eat the most, I have probably had a pretty steady dose of it.

That could definitely be it....often, misdiagnosed RS is from when there is hidden gluten that's mistaken to be refractory sprue -- cut out all the hidden stuff and you might find that you have no problems, after all. One more rice question: do you cook it using water or chicken broth? Chicken broth could be another source of gluten, and you said that you have rice often.

Since you're taking a supplement which is "the equivalent of 100 yogurts" and having symptoms, I would question whether you have casein intolerance. Good luck 'sleuthing'. 

BURDEE

It could be......I mentioned the possibility of hidden gluten, SIBO, or other allergies or intolerances. Many here have lactose intolerance...it could be casein intolerance...you'd have to ask the celiac dr. about that.

am very grateful for your post, more than you know. I came home from the dr today, and I was so scared and alone I just cried. All I could think about is not being around for my four children (I have a 10 yr daughter, 5 yr daughter and 3 yr old twin boys). The thought of me not being around to watch them grow up just terrifies me.

I am seriously thinking of taking a 6 month leave of absence from work to concentrate totally on my health and dedicate myself 100% to getting better. I am sure the stress filled life that I have (work full time, 4 children, my mother and grandmother rely on me for all their errands), is not helping my situation any.

When I talked to a nutritionist, Anne Lee (who works with famous celiac Dr. Green), she said that one of the key things is not to worry -- stress is not good for dealing with and recovering from celiac disease....I'm sure a stress-filled life isn't helping any. What do you mean by not being around for your children? Surely Celiac symptoms wouldn't cause death, right?

Hugs to you, celiac3270, you are a very kind and considerate person.

Thank you.... It feels good to know you helped someone or made them feel better. That and the prospect of learning something new are the reasons why I post so often here. Good luck with the celiac dr. I think there's a great chance that it's not RS. It can be misdiagnosed so easily, and this was by a GI, not a celiac specialist. If they can misdiagnose a Celiac with IBS (like with sue); completely incorrect, surely they can make a common error here.

-celiac3270

Hi Karen,

First off, don't believe everything your GI says....a true celiac specialist might be able to help, but my GI knew less than I did about celiac disease after awhile. Second, you don't know for sure that it's refractory celiac disease. Refractory celiac disease is defined as when your symptoms will not respond to the gluten-free diet. However, there can be some other cause you're not aware of so you may not have refractory celiac disease. For example, if you had lactose intolerance or SIBO.....I think that's what it's getting at. There's an article on Celiac.com about it.......this "permanant diarrhea" would mean that diarrhea, your main symptom, will not go away with the gluten-free diet. Steroids, I have read, can be used, though. Here's the article, in case you haven't already read it:

Refractory Celiac Disease