520.Necessary to be so strict Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes

Necessary to be so strict: from on 2003-06-17

I have been reading through the forum and seeing things about having separate toasters and slicing boards and things for gluten-free family members. Will a couple of crumbs really cause a problem?

My husband and I went on the "Blood Type Diet" last year which for us involved removing wheat from our diet. We discovered that his irritable bowel syndrome cleared up, as did a rash on his face we had thought was rosacea. After a couple of months we abandoned the diet, as the restrictions were too difficult for us, but we just heard something on the radio about celiac disease and think that is probably what he really has. My concern is that I want him to do what he needs to to be healthy, but I'm pretty sure he isn't going to give up all gluten products forever. Will cutting back do him good? Is it really a big deal to "cheat" once on a while or only do the diet partway? That's what I think he's going to do, which is why this talk of "cross-contamination" and crumbs in a toaster concerns me so much. I think he'd rather have some intestinal problems and bad skin than give up noodles and pizza for the rest of his life. Can someone give me some advice

Re: Necessary to be so strict: from Peter on 2003-06-17

Some people can be very sensitive - they have to be very strict.
Others are not so sensitive and although they are aware of the symptoms, chose not to be so strict.
There is evidence that cutting back is better than not cutting back at all, but there is still a risk that hidden side effects will suddenly become apparent - such as the increased risk of some cancers, damage to the nervous system.

We all make our own decisions. I will have a steak when everyone else opts for pizza.

Peter

Re: Necessary to be so strict: from Emily on 2003-06-25

CD it is like being pregnant, you either are or you are not, you cannot be a little bit pregnant & you cannot have CD a little bit either.
For people who have CD the only treatment is a gluten free diet.
If you want to find out if your husband has CD he will have to be on a normal (ie gluten-containing) diet - so his body reacts to the gluten- then have blood tests and possible biopsy.
Yes, if you have CD you have to be very strict.
I did not realise (soon after I was diagnosed) that I should not put my gluten free bread in the family toaster. When I did this a few ordinary breadcrumbs got on my toast & I was ill, in pain & had violent diarrhoea as my body tried to get rid of the gluten ASAP- very unpleasant indeed.
I would not advise cheating on a gluten free diet if you have CD, even if you don't react you may have internal damage.
IBS is one of the illnesses associated with undiagnosed CD.
Here is some information about IBS & CD:
http://coeliac.info/suppboard/viewtopic.php?t=470

Re: Necessary to be so strict: from on 2003-07-21

I had alot of prblems with diarrhea for many years.If we went out for dinner I was so worried about getting into the car and heading home. I could not go ut to lunch or dinner and go shopping afterwards in fear of have one of those belly aches that caused coldsweats and gurgling, then a bout of diarrhea. Sometimes I would come out of the bathroom so beatup and tired as if I worked for hours non stop. The pain was terrible, I said it was like having a baby. I decided one day to stop taking all the pills the general practioner perscribed for me. They never worked anyway. I talked to my eldest daughter, who works at a healthfood store. She also is a vegeterian. She told me to go to a holistic doctor. He gave me several natural supplements and advice on cutting out things in my diet. And one of the things was gluten. It really is nice to be able to eat without the fear of having a belly ache. Just the other day however I ordered clamchowder. I beleive they may have thickened it with flour and not cornstarch. I had a terrible bout. But I decided I need to ask how they prepare the food. I have only been trying this diet for two months. I'll learn how to order and as questions when out. I am really having alot of fun doing research on a gluten free deit. I find alot of imformation on the internet and I bought several books. There is alot out there to get the information. I advise anyone who has this problem to work at changing their diet. It makes a big differance. Thank you! Natalie Angstadt

Re: Necessary to be so strict: from on 2003-11-11

Jen

I have been diagnosed with Celiac for the past (going on) 10 years. I am one of the lucky ones that I'm not very sensative. I can put my bread in a toaster and not have a side affect. That doesn't mean I'm not doing damage to my body though. I'm probably still causes irritation to the villi. However, I choose to live this way. I do take chances on things and sometimes have the attitude, if I get sick, okay. For instance. I really really wanted broasted chicken. Which does contain some flour in the breading.....I took the chance and ate some - not a lot. One piece I ate the breading and one piece I took the breading off. I was fine. No real symptoms. Next time, I was greety and have 3 pieces of chicken with breading and all.. I got really bloated. Very very FULL Feeling. So, that time, I felt a little sick.

Everyone has to make their own choices with this. Some are very adament about being strict others aren't. I haven't gone to the extreme where I sit down and eat a 'normal' wheat pizza, or a piece of bread, but I do cheat here and there. I still try to maintain somewhat gluten. You learn as you go what you can tolerate and what you can't.

Hope that helps. I do agree that it's better to find out if your husband does have celiac - there are a lot of choices out there now that a lot of the 'givingup' foods have good substitutes that you can't tell it's not wheat

Re: Necessary to be so strict: from on 2004-11-14

Maybe I am just a lucky one ... only time will tell.. when I was diagnosed a coeliac some 10 years ago I was obsessive in label reading, and life was dull, yeo I got better but man my diet was sooooo difficult especially when wherever I went I felt like oh no what if ....then I met a consultant gastroenterologist who had been a coeliac all his life, he explained to me that most coeliacs can tolerate small amounts of gluten and it is a minority who are so sensitive that they can tolerate none at all.

I drink the odd beer and yep I can suffer occasionally , coors light and becks seem to have the least effect , found out the hard way with hobgoblin and bishops finger.... mind you once in a blue moon is a small price to pay for not suffering from too dull a diet or life

Re: Necessary to be so strict: from on 2004-12-08

I recently attended a Celiac Symposium at Columbia-Presbyterian Hospital in NYC. And yes, it is necessary to be strict, but most people will not be bothered by an occaional crumb of gluten. I am asymptomatic, but I'm careful because I don't want to develop intestinal cancer, osteoporosis, etc. I'd suggest your husband speak to his gastroenterologist and perhaps a nutritionist. I will add, that I've been on the diet for a year now, and pasta and pizza no longer excite me as much. I order fish or chicken (no breading or sauce) when I go to an Italian restaurant. It's limiting, but I feel proud of my commitment

Re: Necessary to be so strict: from Cris on 2007-01-21

Ive had what I and medics believe to be Coeliac for over 10 years. But since a child I always suffered from diarohhea and craved sausages for some weird reason. I lived off them. Wouldnt eat anything as a child unless it contained sausage.



About 7 years ago my doctor faxed my place of work and told me to go too A+E as soon as possible. I had every test imaginable. I was told it would most certainly prove with a camera in my bowel that I had coeliac.



I was told too eat Gluten and Wheat for 24 hours before the test. The nurse doing the test told me it was as they suspected.



When I went back for the results I was told that the results were clear. I have a Wheat Allergy and that was the end of that.



Never saw anybody else. I now dont eat Wheat but am going for allergy tests for Eczema in 3 weeks time. Should I eat Wheat and Gluten in the meantime or will keeping to the wheat and Gluten free diet show up more with the patch tests ???????

Re: Necessary to be so strict: from Peter on 2007-01-21

If you were on a gluten free diet, then eating gluten or wheat for 24 hours is not sufficient time for the diagnosis of the coeliac condition to be made by endoscopy, according to the literature.

If you need a gluten-free diet, then it should be totally gluten-free. No sausages, no wheat or barley, no rye etc, or any product that might contain them. Not just no obvious wheat in the diet.

That being the case, then you should have no gluten in the diet to cause eczema. If your diet is totally gluten-free for several months and you still suffer from eczma, it would suggest that gluten is not the cause of this eczma.

Necessary to be so strict: from dave on 2008-01-20

I am 30 years old and have been diagnosed since i was 2. I have never worried about cross contamination. Heck when I was in college I ate pizza sometimes. Likely it has done some damage but very little symptoms showed (sometimes a little diarea but never instant). The later you find out you're celiac the more sensitive you are, I'm convinced any gluten in your diet will do damage though even if symptoms don't show it. I havn't cheated in years I don't want problems when I'm older