Update on Shells
#41295 - 01/27/04 02:59 PM
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Shellsbells
Reged: 12/16/03
Posts: 218
Loc: NW England, UK
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Well, the good news is the doctor is sure I'm not celiac. He was really good, spent loads of time going through my history and test results, examined me and was very helpful.
The bad news is he says I'm almost certainly intolerant to wheat and dairy (well dairy is out of bounds anyway) but the wheat is a big blow. Since I've been eating it over the past few weeks, I've felt awful - even had sore itchy eyes and a serious pimple breakout, the last time I had pimples was years ago when I was eating wheat on a daily basis. 
This means I not only have to follow the IBS diet, but no wheat (and oats, at least initially). So this is gonna be fairly restrictive for me, harder to cope with and much harder to get my soluble fibre intake up. Anyone else have to avoid wheat too?? What do you recommend???
Also, my doctor told me to keep up with the soluble fibre supplement (I have acacia and he prescribed Normacol, which sounds very much like acacia - it's a vegetable gum which doesn't ferment and increase bloating etc, like acacia).
He also prescribed Colofac (Mebeverine) which I can take each day if I like or just when I'm worried about an attack (like when I have a 3 hour meeting, trapped in a room with 20 people!!!!) I tested it straight away before my meeting thisafternoon and it worked like a DREAM....I'm delighted! It works by relaxing the bowel wall so that the bowel can't go into spasm and therefore avoids any gas, pain, D...
He's also referring me to a dietician at the hospital, so I can manage my limited diet and don't become too deficient in anything.
Finally, he told me to exercise EVERY DAY, reduce stress AND reminded me that stress isn't the cause, but a trigger. Personally, I'm still reeling with shock that he suggested I'm 'INTOLERANT' to wheat & dairy. I thought every GP in this country would roll their eyes in despair at such a word, but no... He said he does get a lot of patients claiming intolerance to foods when they're a bit overweight and so on, which is utter rubbish, but some people genuinely do have intolerance to certain foods, particularly dairy...
Anyway, I'll shut up now. Armed with my new medication and cutting out the wheat I should soon be feeling much better than I have for quite a while 
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Shells, I'm so glad you know a lot more about what's going on... but I'm sorry to hear about your wheat intolerance! I'm sure that's going to be a very tough adjustment... I know it would be for me! Hang in there, and I hope your wheat-free diet helps out!
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"Anyone can exercise, but this kind of lethargy takes real discipline." -Garfield
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Yaay Shells!
#41314 - 01/27/04 03:47 PM
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Bevvy
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
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Wow, I sure like your doctor! He really got you some ANSWERS, Girlfriend! Does "wheat intolerance" mean you can't have white flour? Is that a stupid question? You used to eat whole wheat, right? So now you eat French bread or sourdough, yes? I sure like the sound of that Colofac stuff. Normacol? Hmmm. Interesting. I'll be anxious to hear how this works for you. And I'm anxious to hear about the dietician, what he/she tells you. When's your appointment?
Gee, I think you had a GREAT appointment with your doc! (Can I make an appointment with him?) I'm encouraged for you. That's terrific news, Shells. I think you're right -- you SHOULD be feeling much better in no time. Yaay!
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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There are several of us here that eat no wheat products. I am also intolerant, some are celiac (which is an allergy to gluten). We are luckier than celiacs as gluten doesn't seem to be a problem (it's hidden in SO many foods), just the wheat grain. There are so many recipes on the web, you'll need to get a basic book such as The Gluten Free Gourmet by Bette Hagman. She has the flour substitution ratio recipe that you will live by. You'll need to revamp your cupboards as now you'll have no fewer than 5-10 different flours in the pantry. If you get in a bind, just ask, someone here will be along to help you out of any fixes and offer advice. 
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What I've read about this says that it contains Frangula bark, a laxative. Since I'm not in the UK I can't get my hands on an actual package of this stuff to check it out - it's all been internet research. But you might just double check this to be sure.
I just recently had to revise the First Year IBS for a UK edition, which meant a lot of research in the UK soluble fiber supplements, and there didn't seem to be a single option available that either wasn't psyllium or did not contain a drug in addition to the fiber.
If Normacol is just pure soluble fiber, could you please let me know? Thanks!
And what a great doc!!
PS - don't worry about the wheat intolerance. If you're not intolerant to gluten, this leaves oats and barley and buckwheat and basically all other grains but wheat. Plus, you've got rice, rice noodles, cornmeal, and the special bread/baking mixes that are meant for gluten-intolerant folks. Check some of Kandee's posts on the recipe board!
- Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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That's not an unusual assumption, my friend thought she wasn't eating wheat while she was eating white bread. White bread is wheat, french bread is made from wheat, most cookies/cakes/etc......are made from wheat flour, including fortune cookies.
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Shells,
I was wondering where you were!!! You're one of my favorite posters.
Ok, listen up; it's NOT the end of the world. Wheat intolerance is very common. Take it from one who has been allergic to wheat since I was about your age, going on over 26 years now. And I mean not just intolerant but down right allergic. I ended up in ER a couple of time getting shots to pull me out of it and stop the esophageal spasms. I'm wondering about your "pimples". You sure they weren't hives? It is common in food allergies. I had them all over, even in my hair and between my toes. Everything itches, and yes, even your eyes. You feel terrible, no energy and like you have the flu.
NOT eating wheat is not going to make you nutritionally deficient one bit, unless you let it. Other than some soluble fiber and something to put your jam on, what is it really contributing? Rice and potatoes and other safe grains can do the same thing. The options out there today are endless, not like when I only had rice cakes to eat, the only thing on the market available at the time. You just have to look around, and be aware of what constitutes the possibility of wheat being in a particular product. The dietitian can help you out there. It may be such things as "modified food starch" that really means wheat. Then there are other things, like soy sauce that use wheat, however La Choy (if you can get it there) doesn't. If in doubt always buy products that say gluten free, not just wheat free.
Join the Celiac.com boards, and there are others. They embrace not only Celiac patients but wheat intolerant folks as well. They also have great food lists….what you can have, and what you can't, and recipes as well. Get some books that address eating wheat free with recipes. There are bunches of them out there. You are smart and I know you will get even smarter, real fast!!!
(And BTW, for the American folks reading this, there is a great Celiac article in the Feb. 17th issue of Woman's Day magazine, page 58, that addresses one of the main complaints of Celiac patients being bloating. Sound familiar to all of us? It also says that now the stats are 1 in every 133 people who are Celiac, that's means it affects over 2 million Americans of all ages. Like IBS, it affects more women than men. If the rates keep climbing like they are now in a few years Celiac disease will outnumber diabetes and Crohn's disease.)
Interesting that your doc wants you off oats. I assume barley and rye as well? You know what that means don't you? He likely wants you off all the gluten based grains and then will see how you do adding them in one by one. I never had a problem with the other grains, until recently. The more I eat gluten free the better I feel which means I may be Celiac. (And her we go with the heritage factor…being ˝ Irish, the rest English, French and a little German.)
Sounds like you have a good doc you can work with, who is concerned about your soluble fiber intake, and your IBS as well. You are very lucky!!! That's more than a lot of people have.
Don't, please, look at this as a set back. Look at it as an adventure, a challenge. You will be surprised at how much better you will feel in a few weeks if you strictly adhere to the rules.
In the meantime, if you want to e-mail me, feel free. I have more suggestions, recipes, etc. if you want them.
Good luck, Kandee
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That's helpful
Just wondering, do you eat oats, rye, barley? Can't say I've ever eaten much rye or barley anyway, but I'm a bit wary of the oats. Tried them a few times - can't tell if I react slightly or if it's my worry about eating them?!
Shells
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Grains
#41326 - 01/27/04 04:23 PM
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Kandee
Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California
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If you are just wheat intollerant, you CAN have rye, barley, and oats. Kamut and spelt flour is usually tolerated by wheat intollerant folks, even though they are old world wheat grains, but they lack the 2 enzymes that is the allergy culprit in new world wheat. Kamut and spelt is the MOST like the wheat you are used to, and as far as I'm concerned you can't tell the difference. There are a bunch of other grain flours; amaranth, quinoa, etc. to use but I think they taste terrible when you bake with them. Buckwheat is ok, even for celiacs and makes a delightful pancake, however it has a taste you need to acquire.
And about oats. Oats are funny. All wheat intollerant folks can have them with no problem. With Celiacs, some can, some can't....strange. The problem they feel is with cross contamination...........which is a whole other issue.
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Ooh, thanks for the advice.
I checked the info with the Normacol - it says:
'Normacol granules contain 62% sterculia. Sterculia is a vegetable gum from the karaya tree...... Normacol also contains sugar (sucrose), talc, titanium dioxide, sodium bicarbonate, parrafin wax and vanillin. The sugar provides 7 to 14 calories per dose. The sodium content is 1.25 to 2.5 millimoles per dose. Normacol is gluten free.'
I think this means it's just soluble fibre??? does it sound safe?
There is another product called Normacol Plus, which contains 62% sterculia AND 8% frangula.
I've added a link below:
http://www.prodigy.nhs.uk/ClinicalGuidance/ReleasedGuidance/DrugList.asp?scenarioID=946
Hope this is helpful to you.
Thanks again, Heather
Shells
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Re: YW
#41331 - 01/27/04 04:43 PM
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Karin
Reged: 02/11/03
Posts: 483
Loc: Southern California
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Rice flour is my staple flour now. Then you add potato starch, brown rice flour, cornstarch, arrowroot flour, sorghum, tapioca starch, buckwheat........etc....but actually I don't use rye or barley at all. Most recipes don't call for those flours. I can't remember the last time I used oats or oat flour either. Most recipes you'll use will be gluten free and oats can contain gluten so not too many recipes will have that ingredient.
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Re: Grains
#41333 - 01/27/04 04:45 PM
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Karin
Reged: 02/11/03
Posts: 483
Loc: Southern California
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Kandee: I've been too chicken to try Kamut (I have a bag in my cupboard) as Spelt. I felt like spelt bothered me, so I added it to the regular flour I keep on hand for wheat cooking.
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Hey, this sounds good! The plain variety looks just fine - fabulous! Finally a UK option! Let me know how it works and if you like it.
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Thanks, Kandee, you've made me feel much better. I've sort of subconsciously cut back on the wheat over the past few years anyway and any over indulgence always makes me suffer, so it's not such a great hardship. Sadly, I have a love-hate relationship with the stuff - it makes me sick, but I adore it with a passion and could willingly forsake all other foods in favour of it. I don't know why, it's not the tastiest or most exciting of foods (hmmm, suspect this craving/addiction is a tell-tale sign of a problem with wheat!)
Yeah, often my symptoms are more like an allergic reaction, although they build slowly over time and the more wheat I eat the worse it gets. I don't seem to react to it immediately. The pimples could be hives, they start off sore and itchy, but then develop little white heads just like acne pimples. I get really sore itchy eyes, styes, catarrh, tiredness, headaches, generally itchy skin and so on.
Like you, I'm a bit Irish, bit Scottish, mostly English and a bit French. I like to think of myself as a bit German too, as my dad lived there for 12 years (before he met my mum), could speak German and used to tell me about his 'adventures' when I was little, I also studied German and visited a couple of times!
I wonder, given my ancestry on this little island if i've inherited the fishing/potato-farming genes rather than any grain agricultural ones! Perhaps my ancestors were celiac but I've inherited a dilute version of that gene - hence intolerance, or maybe I have the potential to develop celiac eventually if I overdo the wheat for long enough? I don't suppose it matters, I'm just better of without it.
I'm lucky I don't have a severe allergy though, like yours, that's NO fun! I have enough allergies thank you, don't want any more.
Thanks for the support, you're all wonderful.
Shells
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lol, Bev... Sadly, my doctor is so popular I have to book him weeks in advance myself!! Not sure how it works over there, but my GP practice is fairly large with about 6 doctors and you can see any of them, although you're supposed to get priority with your own doctor, it never works that way in reality. But it's often worth the wait to see someone decent when you hear what others have to face.
As for the wheat, yeah, that means the white stuff too 
I have an affinity with wheat flour that makes me drool over bread, biscuits, cakes, pasta ......like nothing else. Just the mention of fresh warm bread or a cake and I can see, smell, taste and feel the texture in my mind! Perhaps that's the weird chemical reaction it creates in me!
lol 
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Re: Grains
#41344 - 01/27/04 05:34 PM
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Kandee
Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California
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If in doubt about kamut or spelt either one, I suggest you go get the commercial breads made with both, seperately of course, then test them to see your reaction.
I can't remember the brand, maybe it's Food for Life, that makes an all kamut bread, and an all spelt bread. If you're near a Trader Joes they have them.
I've just gone back to the commercial, gluten free rice bread since my bread baking abilities leaves a lot to be desired.
For all the other things I, like you use a mix of different flours. I've just discovered sorgum flour and love it even though it's a bit grainy.
Are you trying to eat gluten free or just wheat free?
I'm curious.
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Re: Grains
#41348 - 01/27/04 05:46 PM
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Karin
Reged: 02/11/03
Posts: 483
Loc: Southern California
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Wheat free at the moment.
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Shells: here is what your pantry will look like after you change to a no-wheat diet.........lol. Kandee, what does yours look like? I bought out all the plastics from my local store to do that and I still don't have enough.....lol. Those are just different flours, nothing more. Wheat free Pantry
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