celiac3270

I saw a post on tax information at Delphi Forums under the general discussion. Unfortunately, I couldn't make a link to it here, because when I copied the url into my browser, it just takes me to a general section, but not to the post I wanted to copy to you. Anyway, the celiac board is at Open Original Shared Link and the topic is under general discussion.

-celiac3270

However, they brought a couple with them who is wanting to start a gluten free bakery. They had brought some products to sample and set them out before the meeting for people to try.

As the meeting went on, the lady of this baking couple goes "so how careful do we need to be if we bake regular items in our store". We explained to her that cross contamination was a huge issue etc etc. She then goes " well then I guess you probably shouldn't eat the products we brought" after many of the people ate them!!  I guess she wasn't so careful with her baking, and pretty much didn't do any research before baking these for the group and even putting a label on them that says "GLUTEN FREE". She basically poisoned any person who had tried her products at that meeting! I was flabbergasted at their lack of concern and lack of research before attempting to feed people a products. Especially when they are running a busisness. Crazyness!!

Wow--that's absolutely ridiculous. Really sorry to hear that the meeting didn't turn out that well.

I have nothing more to add, but wanted to say that I strongly agree with just about everything that has been said

Hmm....I didn't think they were gluten-free...the Hershey's kisses are gluten-free, the normal Hershey's chocolate bar is gluten-free...I might be wrong and I haven't checked officially, but I thought that they contained gluten....

You can always check with your GI if it's lasted awhile, though I think that week-long symptoms are to be expected if you've been gluten-free and suddenly been contaminated. Your body reacts even more strongly after you've been gluten-free for awhile, as if it's warning you that it doesn't want the gluten

Anyone can have celiac disease-- it affects 1 in 150, most of whom are undiagnosed. You can have celiac without having ANY symptoms and the symptom list is so varied, which is why I think everyone would be better off if everyone got checked since it's so common.

I'm a very nervous person. I have been most of my life. I'm wondering if there is an anxiety/ celiac disease connection.

My symptoms include: anxiety

nervousness

afraid of public places

weight loss(35 lbs. since July '04) just from nervousness and diarrhea

middle and lower back pain(so painful that I have to lie on hard floor just to get some relief)

stomach cramps and diarrhea

pimply, fluid filled bumpy rash on hands and bottoms of feet

discolored and thick toenails

low energy level

I feel plagued just trying to do simple tasks such as standing to do dishes( so it's nearly impossible to get a job outside the home)

I was diagnosed with IBS over 3 yrs. ago and had a colonoscopy but it was still decided that I had IBS. I take an anti- anxiety drug that seems to help some with the nervousness but I still get the other symptoms.

Addressing your symptoms: anxiety is very common as is low weight or weight closs. Diarrhea is probably the most common symptom and I have the stomach cramps symptom that you have. I'm not an expert on this, but Dermatitis Herpetiformis is a skin condition (resulting in rashes) that can accompany celiac. Perhaps the bumpy, pimply rash you have is that. Low energy level sounds very common in celiac. Finally, IBS is, in the eyes of many, just a label doctors put on gastric problems when they can't figure out what it is. Many people here were first diagnosed with IBS. Your symptoms seem to tie in SOOOOO strongly with celiac disease that I would be genuinely shocked if you didn't have it.

Definitely get some bloodwork performed and then if you want further verification, an endoscopy. Keep us posted and welcome to the board

A few quick facts:

- The majority of celiacs have no symptoms. This is one of the main reasons 1 in 150 have it, but most people don't know it and never find out. It takes awhile for doctors to diagnose celiac in people with symptoms, which is why there seem to be so fewer celiacs without symptoms on this board. Now, probably the majority of DIAGNOSED celiacs have some symptoms. Asymptomatic celiacs are very common, however. Therefore, your son could very well have celiac.

- Putting him on the diet should not affect him negatively at all. After all, if you don't have a peanut allergy and you cut nuts out of your diet anyway, you don't suddenly develop problems with peanuts. That's the wonderful thing about this diet: you can just try it and see if it helps any and if it doesn't and you've run conclusive tests that determine he doesn't have celiac, you just return to the old diet.

- Low height or weight is a sign of celiac. Celiac results in the destruction of the villi that line the small intestine when wheat, rye, barley, or any other forms of these products are consumed. The villi are very, very tiny finger-shaped things that increase the surface area of the intestine because they protrude out of the walls of the intestine. The villi absorb nutrients. Thus, when the villi are destroyed, the intestine is only absorbing nutrients through the walls themselves, which can result in malabsorption. That's why some celiacs are thin and many don't grow very much. I'm a 14 year-old male and when I started the diet almost a year ago, I was 5'1 tall and straddling the 70 pound mark. No matter how much I would eat, I wouldn't gain much weight. I also had the symptoms of stomach pains and vomiting, which meant that everytime I got a bout, which was about every 1-3 weeks, I would drop 3-5 pounds. I would slowly get back up to around 72 pounds and then get sick again. The highest I ever reached on gluten was 75 pounds. A year later I still have some of the symptoms I had before, but my villi have grown back completely, thus I'm now 5'3" or 5'4" and about 85 pounds--a jump of 17-20 pounds from my lowest points in February of 2004. I have a ways to go, but I've grown a lot more on the diet--while on gluten, I gained literally 1-2 pounds every year...now I've gained about 20 in 11 months.

- Bloodwork is very reliable for testing--the endoscopy does not always come out positive, so you shouldn't dismiss celiac if you get a negative biopsy. This can be the result of which areas the doctor took samples from. Certain areas might be destroyed, others might not yet be affected, if he has developed his celiac relatively recently. If you get positive blood/biopsy, I think it's your duty to your son to try the diet. He may have no symptoms now, but some people go years without symptoms and suddenly develop them. Not only are there the short-term discomforts of stomach aches, gas, diarrhea....not only are there issues with growth.....celiac that has gone many, many years without treatment can lead to ulcers, cancer, osteoporosis, malnutrition, eating disorders, etc. You must at least give the diet a try. Wait, though, until after the biopsy for the diet change as you don't want to mess up the results.

Good luck and welcome

-celiac3270

Are all posts pinned by a moderator, or just posts from Newbies? Some boards I've been on only "hold" your post if you are not logged in when you make the post. I've never seen one that holds all posts to be "pinned" by a moderator.

Also, one of the rules I read was that we are not allowed to promote our own business, etc... is putting my business website and a description of my business as part of my interests on my Personal Profile against the rules? I'm suspecting not since it's still there...

Thanks!

Me too...

Also, if you get stomach pains or gas pains...dunno if you have that symptom-- anyway, if you do, try a heating pad--very helpful.

Hmm....I'd talk to your doctor about this. The good thing is that it's only been a month about three weeks--not long enough for too much healing. The bad thing is that you only have ten days to cram. I think you'd be okay as long as you eat a lot of gluten--like a bagel in the morning, sandwich at lunch, pasta dinner...you get my point.

Ensure is gluten-free....

Yep...of course, make sure it looks like a credible site. The shipping is high, so you're best off with a nearby healthfood store, but with some sites they have a flat shipping rate so you can just order in bulk and the shipping doesn't seem as extreme.

Yes--it disappeared because it wasn't pinned. That means that a moderator hadn't seen it yet, verified that it was a valid post, and thus, moved it to the front of the forum. I have just pinned it, so it's now at the front of the foods, products, shopping, and medications section.

Rice, though it seems innocent, can be problematic. First, you need to make sure that it doesn't have anything weird added to it, such as spices, etc. Most likely, though, it was made with chicken broth instead of water, which means that it very likely wasn't gluten-free. I'll bet that's your problem--very common.

Feel better!

Cool idea...there isn't any program here with that, obviously, but I guess you could just ask someone who seems knowledgeable via e-mail if they'd be willing to help with questions or whatever--I guess this board is sort of like that, just with many different people, some of them in the same beginning stages of the diet.

That's definitely true. I got a chart from Jessica's Yahoo Support Group that says which nutrients you're lacking if you have certain cravings...really helpful...I think I posted it up here awhile ago, but I don't remember where--

Yes...you also start to forget what the old version tasted like after awhile, which makes you all the more satisfied with the gluten-free version. I've been almost a year on this diet and lately I've been literally rechecking that the bagel I'm eating is gluten-free...and of course it is--it has it on the package--I'm just saying that it gets better. Especially since you find better and better replacements.

Bread is very difficult to replace. I think I read an article that somewhere in Northern Europe somebody made a break-through in celiac bread , but so far there isn't anything exactly like the old bread. The main problem, I think, is density.

For store-bought breads, I think the Ener-G and Kinnickinick breads are the best. I think I usually use Ener-G, but Kinnickinick is good, also. Unfortunately, breads are rather expensive. I think the main fault for both is that they aren't light enough--too dense.

I've heard that it's very difficult to make a good homemade bread that doesn't flop or anything. There are many posts under the baking, cooking tips, and recipes section, though, which would probably help you find a recipe and tips on how to make a successful loaf.

Good luck!

-celiac3270

Some publicity for celiac...and this site!

Celiac: Health matters at Political Gateway

Florida- (Political Gateway 1-19-2005)- Political Gateway.com, a website catering to political candidates, mavens, and news hounds has added a health news feed dedicated to Celiac Disease. Sufferers of Celiac disease find they cannot eat wheat and many other grains or they get a host of other diseases. Although unknown to most people, the disease can be found in 1 out of 170 people in the US.

Bob Hoffman, editor of Political Gateway, is a Celiac himself. He now offers free news/information feeds to Celiac and other health websites. Most notable is the long running Open Original Shared Linkrun by Scott Adams.

I live in NY and know that Columbia Prebyterian has a good reputation. It is known also for having some sort of celiac program. Of course, I don't know about the individual doctor, but the hospital is good

You can definitely get gluten-like symptoms even if you ate no gluten, particularly if you haven't been on the diet for too long. If gluten snuck in several days ago, that would make you more prone to getting such symptoms, as well.

How do you get pinned with your new topic? I added a new topic but it isn't pinned. Can you help me celiac3270? Barbara

Sure--sorry, I didn't see this reply until I was browsing through old messages in this forum.

You can't pin a topic yourself. Instead, one of the moderators on the board has to do it. The moderator will read the topic and if it's in the wrong place, move it. Once it's in the right spot on the board (right section), the moderator will pin your topic, thus verifying it's in the right place and it's a good post (for example, not a post from someone advertising for cheap drugs or a duplicate post). Pinning it, of course, brings it to the front of the forum.

So your topic won't be pinned until a moderator sees it and takes the appropriate action. Of course, if you became a moderator yourself, your topics could be pinned right after posting .

-celiac3270

It takes awhile...I didn't like food for the first few months. First, I hadn't found many good gluten-free foods to begin with. Second, I had a sort of aversion to food (not anorexia or anything--just that i wasn't hungry) because I knew that when I ate and my stomach didn't digest, I'd eventually get stomach pains, vomiting, etc.

I'd been this way for a long time. I still feel rather I-don't-care-ish about what food I eat. Maybe it's due to symptoms that come when I eat a lot...I think a lot of it is that with all the temporary restrictions I'm enforcing: no acid (tomato sauce, ketchup, oranges, grapefruit, etc.), not a lot of fat (since the doc. said it's hard to diget), which is tough since I want to eat fat and i should gain weight anyway....etc.

My situation probably isn't the same as yours because I want certain things. I have constant and nearly uncontrollable cravings for sweets, in particular chocolate and also, but less intensely, for softdrinks. I think it's easy to get dejected, though, when there's so much you want to eat, but can't (even if only temporarily). I think after awhile it's to the point where you don't care really what you eat at all. I went many months eating kinda on autopilot....I also noticed that I wasn't very hungry ever--appetite increasing lately. Don't know if this is any help--I just saw something in common between your story and me a couple months ago.

Sounds interesting. I use Ener-G bread crumbs, which are pretty good, but I'll try this, too

I, too, relucantly agree. I mean, I'd love to be able to eat a lot of the stuff I can't, but at least I know that I'll be much healthier as a result.

--and this label reading makes you much more aware of the junk that you would be putting in your body.