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bmzob

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bmzob Apprentice
bmzob
Posted

Hi everyone. My name is Britni, I'm 21, and i've posted on here a few times but I've never given my story...so here it is. I was diagnosed with audiopathic autoimmune chronic hepatitis (sp)...so my white blood cells thought my liver shouldn't be there and so they attacked it. They have no idea of how I got this. I was on prednisone for 10 years to control my immune system...by the end of it I was only on 5mg every other day which is barley anything. So they took me off of that and, my hepatitis has been in remission now for the past 4 1/2 years. I now go in for yearly check-ups to make sure everythings under control.

Because of my immune disorder I also got ulceritive colitius with juvenile pollibs (sp) at the age of 10. I am on asacol for that and will be forever. It is under control with very mild flare ups. With both of these things I never had to change my diet and most people do.

Two years ago I had an attack that the dr's said was reflux...but I'd never had anything like that before...my chest was really tight, my face went white, I couldn't breathe at all, I saw stars. After that I went in for a check-up on my other issues...endoscopy and colonoscopy. The results came back that everything was fine and doing great. So I went in for my yearly checkup this past july and my dr asked me if we'd ever discussed celiacs. I was like no...i've never even heard of that. Well apparantly the villi in my duodenum were blunted, and they saw this two years ago from the last biopsies...however nothing was ever said to me!! So I got the blood test, went in for another biopsy and it was confirmed in august that I do have celiacs. My dr said that immune disorders, colitus, and celiacs normally come together and most people with one or two get the others eventually...thanks so much for informing me of this now.

Anyways so I read all about celiacs online, about what i could and could not have. I went and saw the nutritionist who was absolutely no help what so ever, she didn't tell me anything more than what I already knew from the internet. After this appointment was when I had my panick attack of uncontrolable crying because no one could give me a direct answer of what exactly to look for on the label.

So I've now been gluten free for two weeks...and it's going alright. I found a good cookie recipe, but I'm still looking for good bread.

I do not get any of the external symptoms of celiacs like majority of people do, it just destroys my insides without my knowledge of it, so I don't know when I eat gluten by mistake. My question to all of you...there is controversy over the distillation processes and whether or not there is gluten still present...Since I don't get any symptoms externally how would I know if distilled vinegars & alcohols affect me or not? Should I just stay away from them completely or what? Also, we're supposed to stay away from wheat, barely, rye, oats b/c of contamination, and all of their derivatives...what about buckwheat?

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Guest nini
Guest nini
Posted

thanks for sharing your story.

I'm really tired so I don't know if I can answer all your questions but first, buckwheat is from the rhubarb family and NOT WHEAT and therefore is safe. As long as the buckwheat product doesn't have added wheat gluten then you are ok.

as far as the controversy about distillation processes go, I'm not entirely clear on that myself, so maybe some more technical member can help you with that. Personally I trust the vinegars in products like Heinz ketchup, and certain pickle brands. I don't drink alcohol so I can't help you there. I know there is a list on the main site of this board at Celiac.com that lists safe alcohols.

as far as breads go, my daughter really likes Kinnikinicks Italian White Tapioca Rice Bread, we keep it in the fridge and microwave slices to warm them up as needed. I prefer Pamela's Amazing Wheat Free/gluten-free bread mix. I use my bread machine although you can use a mixer with dough hooks and your oven if you don't have a bread machine. I love this bread. I go through a bag of it a week!

Hope I at least answered some of your questions. Have you checked out my newbie survival kit yet? If you click on the link in my signature for my web page, the newbie survival kit is available for download (free) at the bottom of the page

gfp Enthusiast
gfp
Posted

First things first ....

WELCOME HOME

no really because you don't realise it yet but your story is far from uncommon so make yourself at home and start reading our books as it were.

My dr said that immune disorders, colitus, and celiacs normally come together and most people with one or two get the others eventually...thanks so much for informing me of this now.

and your story is far from uncommon (unfortunately)

Anyways so I read all about celiacs online, about what i could and could not have. I went and saw the nutritionist who was absolutely no help what so ever, she didn't tell me anything more than what I already knew from the internet.

again welcome to the club!

I do not get any of the external symptoms of celiacs like majority of people do, it just destroys my insides without my knowledge of it, so I don't know when I eat gluten by mistake.

Many people are also non-symptomatic. However you may find you have other symptoms you don't rtealise you have. (seriously) and that you realise this once they go away....in other words you have scope to be better and better still!

Long answer is discussed elsewhere .. short answer... some of us symptomatic types do react to grain alcohol.

Since you can't tell I give you my personal motto "When in doubt, leave it out"

nini answered about buckwheat BUT there are lots of other non gluten "grains" you can discover like quinoa

Have a look around, make yourself at home and then ask some specifics and you will get lots of helpful people doing everything they can for you.

And did I say? WELCOME!

Canadian Karen Community Regular
Canadian Karen
Posted

Boy oh boy, you have no idea how many of us can relate. It's like a broken record around here, 1) doctors being terribly misinformed (i.e. why the heck didn't they mention the villious atrophy to you before?????) 2) nutritionists/dieticians being totally useless.

I think once you read some posts around here, so much of what is shared here will be totally familiar to you!

There are a bunch of really knowledgeable, compassionate people on this board. You can post any question you want, it is important to remember: No question is considered stupid on this forum. This diet can be so overwhelming and complicated at the beginning, but honestly, it will get alot easier and become second nature to you.

Oh, I forgot to say welcome!

Karen

I do not get any of the external symptoms of celiacs like majority of people do, it just destroys my insides without my knowledge of it, so I don't know when I eat gluten by mistake.

Oh, forgot to mention, this may very well change. Once you have been off gluten for a period of time, you might very well notice that you are much more sensitive to it and you will certainly feel when you have been "glutened". You just have to get the poison out of your system first.......

Karen

GFBetsy Rookie
GFBetsy
Posted

If you are concerned about vinegars, try using rice vinegar - just rice and water. I like it because it has a milder flavor than most other vinegars.

Welcome!

Matilda Enthusiast
Matilda
Posted

.

AndreaB Contributor
AndreaB
Posted

Welcome Britni....you went gluten free exactly 3 months after my family did. :D

I'm one of those people that didn't have symptoms before going gluten lite but they started creeping up on me with stomach upset, intestinal distress until it cleared my system. I second what everyone else said.

Mainly just wanted to say "hi". :)

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Nantzie Collaborator
Nantzie
Posted
First things first ....

WELCOME HOME

This almost made me cry. It's such a good way to put it. So many of us felt like we were weird, and this board gives us a sense of belonging and a sense of home. Hugs to you Steve.... Sniff...

Bmz, you found the right place here. This board is a GOLDMINE. Tons of archives, great advice, and people who get what you're going through. When I found this place, I felt like I had found the other people from my spaceship. :lol:

I agree with what someone else said, that you may be surprised that you do have symptoms once you get going on the gluten-free diet.

I had some of the classic symptoms before I figured out that I had a problem with gluten. Now, when I get glutened, most of the time I get headaches, irritability, anxiety/depression and tearfulness. It's the oddest thing because MOST of that are things that I thought were just part of my personality or part of me just being me. It's only on the rare occasion that I get GI symptoms or fibromyalgia-type pain symptoms anymore.

So you may find that your body lets you know in more subtle ways that you've gotten gluten in your system.

Nancy

elye Community Regular
elye
Posted

Welcome, Britni!

I was also a silent celiac--no noticeable symptoms before diagnosis with the exception of low iron--but since being gluten-free for almost a year, my lower intestine has obviously been healing because, like many here, I DO get symptoms of being glutened now. Bloating, cramps...on the bright side, at least now I know when I've eaten hidden gluten and can avoid the source. It really does get easier, honest! This forum is superb!

tiffjake Enthusiast
tiffjake
Posted

Hoppin on the Welcome wagon to say HI Britni!!!!!

Ditto to Nini about Buckwheat. And to gfp about quinoa. There is also millet.

My favorite gluten-free bread is from Whole Foods. It is their Gluten Free Bakehouse Sandwich Bread. I love the texture. It is like thick deli bread, not spongie like some others I have tried (yuck EnerG).

Nini has a newbie packet (did she mention that??) ask her for it!

I don't take chances with the alcohol anymore. I got sick once when I shouldn't have, so now I get confused....but I do drink white wine every now and then.

And I don't worry too much about vinegars. I thought I had a reaction (I am NOT asymptomatic) once to a vinegar, but not again since then, so it could have been ANYTHING else in that meal/day.

Again, welcome!

CarlaB Enthusiast
CarlaB
Posted

Welcome!

Everyone has done a fine job answering all your questions.

I can give the alcohol question a try. Distillation is supposed to remove the gluten. Many here drink distilled alcohol with no problem. Some have trouble with grain alcohols. You just really need to test yourself and see how you react.

Potato vodka, rum, and tequila are all non-grain alcohol. Wine is too. I know there are some gluten-free ciders out there and some gluten-free beer as well.

Mayflowers Contributor
Mayflowers
Posted

Hi Welcome. I'm intolerant to gluten, dairy, soy, eggs, chicken, beef, beans, citrus, tomatoes, peppers, all tropical fruit except pineapple, coconuts, probably all nuts, and air. I haven't done the A.L.C.A.T. test yet but I'm afraid they'll just tell me to stop eating everything and forget about it... :lol:

So you think you have problems? :D My gluten intolerance didn't manifest as noticeable symptoms until I turned 50. I started getting indigestion, and acid reflux all of a sudden and I noticed it was after eating wheat most of the time. Before that my symptoms were arthritis of my hips. I had no idea it was being caused by gluten. In my 20's I did have a bout with IBS but I had it under control with wheat bran...duh. I thought I developed a wheat allergy and had blood work which came back negative. I found this forum and read about Enterolab, and was tested positive...more than I wanted to be. I also tested positive for soy, eggs, and dairy. The only time I felt pretty good was when I was vegetarian. I ate more rice and beans than wheat.

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