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Recently Diagnosed, Any Help Appreciated

mci289

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mci289 Newbie
mci289
Posted

hello all,

my name is matt, 30 years old from brisbane, australia

i was diagnosed three weeks ago, so i have a lot to learn.

after being diagnosed and reading about this disease, my life, especially the last five years are starting to make sense.

five years ago i was in a motorcycle accident and was in a coma for two weeks, followed by rehab that lasted 4 months, very lucky. it was after this that my body wasn't the same as before, i.e. regular, aches, fatigue, abdominal cramps, etc.

last christmas, a few hours after every meal i was getting severe cramps, that lead to a quick walk. after about ten days, with my male pride erroded away by the refusal of my wife to be in the same room as me, i went to a doctor to find out how long i had to live. like all males i am a little girl when i get sick.

looking back, these 'episodes' have occoured a few times in the past, not very often though. being an australian male, i am quite fond of beer, but i have always known a few types of beer that don't stay in me long enough too finish the bottle. no other food or drink has this effect on me, other beers were fine.

my wife and i have started a gluten free diet, well tried to anyway. i haven't had beer or bread in three weeks, and i think i deserve a letter from the queen. i have noticed a huge difference in my general well-being, more energy, regularity on a daily basis that i didnt think was possible, loss of weight, and no more bloated belly, e.t.c.

i have been living with this for a few years now, and i dont get violently sick as most when exposed to gluten. i have eaten gluten in the past three weeks, mainly in the form of sauces, and the occasional chocolate. this seems to have had no effect on me, still regular and feeling great. is this o.k.? i will never eat bread or drink beer again, items which i class as high risk. the articles i have read all deal with cases that involve people getting sick almost straight away.

does this sound like it is a typical case? a few friends of friends have celiac, and they either vomit or take a quick walk almost immediately after any contact.

hope i have covered all bases of information here about me, if i have omitted anything important, please let me know.

looking forward to all replies,

matty

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Ursa Major Collaborator
Ursa Major
Posted

Hi Matty, and welcome to these boards. I am glad you finally figured out what made you sick.

But you absolutely CANNOT eat sauces containing gluten, or anything else with it, even if you don't get obvious symptoms. Sauces can be thickened with corn starch or light buckwheat flour (which I like best) and nobody knows the difference, they taste and look the same.

Those small amounts of gluten will cause damage and will eventually cause you to be sick again. Or you will find yourself with bowel cancer when you are fifty or so, as a result of those little amounts eating away at your intestines without any obvious symptoms.

You need to commit to be 100% gluten-free, no cheating allowed, ever! That is extremely important. You might also trigger other autoimmune diseases if you don't comply. The risk of regularly exposing yourself to small amounts of gluten is enormous, and you will surely regret it when you are older.

You see, it is inevitable that you will get glutened inadvertently at times. You can't avoid it, unless you only eat food you prepare yourself and eat at home all the time. You really don't want to do it on purpose as well.

There are actually some really good gluten-free beers out there I hear (others will have to give you specifics, as I hate alcohol and can't tolerate any alcohol at all). So, you shouldn't have to give up beer altogether.

There is chocolate that doesn't contain gluten in the form of barley malt. Stick to gluten-free chocolate! I like Ritter Sport. Dark chocolate is better for you than milk chocolate.

And yes, you are a typical case, if there is such a thing. Everybody with celiac disease reacts slightly different from others with the same disease. Some people have an immediate reaction, some have a delayed one, and others don't have an obvious reaction at all. But make no mistake, they all suffer the same kind of damage to their intestines.

Sometimes I react and run to the bathroom within ten minutes of exposure to gluten, other times the D doesn't strike until two days later! I have no clue why, but it is a fact.

Make sure you buy a new toaster if you eat gluten-free bread, as you can't clean the old one well enough to be safe (yes, even a crumb will cause damage, even if you don't have an obvious reaction). The same goes for a plastic colander you have drained wheat pasta with. You absolutely cannot get the gluten out of the old one, and it won't be safe to drain gluten-free pasta with it.

Gluten is being used to make industrial strength glue. It is one of the stickiest substances on earth. You can't get it out of cracks, no matter how hard you try!

Good to have you with us, you aren't the only Australian here. We are a pretty international bunch!

mci289 Newbie
mci289
Posted
  • Author

thank you for your reply ursa

you have answered a few of my major questions, thank you

i found it hard to initially find a doctor who would listen to my concerns about gluten, and since diagnosis i have been to two nutritionists, both were a waste of money, one i walked out on.

i never thought about my toaster or other pots and pans, so the post here was well and truly worth it

as for no gluten at all, you are right. my wife and i have committed to no gluten, in the last three weeks there have been times when i have forgotten to check ingredients. this led me to believe maybe it was o.k. in moderation

your reply has definately laid down the law to me, and again i thank you for that

i have looked into gluten free beer and the price will stop me from drinking beer again. the price is AU$90 a carton compared to AU$40 that i used to pay

i am in canada in september for a holiday, so i will look out for the chocolate you recommend, as i have never heard of it before

thank you for your good advice, and i may need more soon, so i am glad i know where to come to get it from

matty

Ursa Major Collaborator
Ursa Major
Posted

Ritter Sport is German chocolate that you can get here as well. I am sure you can find other chocolate in Australia that doesn't contain gluten, though.

It takes time to really get the hang of the diet, and shopping takes soooooo much time at first! But reading labels is a must and will keep you from getting sick.

Some have found that they could make their own gluten-free beer with kits! I don't have a clue where to get them, but surely somebody will know. Maybe start another post about that?

Where in Canada are you going in September? I am north of Toronto, in Ontario. The leaves will be spectacular a little farther north of us in September.

At the beginning is when everybody makes the most mistakes, and gets those 'oops!' moments when biting into that cookie somebody offers, or other no-nos, because we are so used to doing those things. It is hard to break old habits. You'll soon remember to read all the labels.

But just yesterday, after 2 1/2 years on the gluten-free diet I ate something without checking the ingredients first (assuming it was gluten-free) and glutened myself! I was so mad that I let my guard down. It happens to the best of us.

nikky Contributor
nikky
Posted
i have been living with this for a few years now, and i dont get violently sick as most when exposed to gluten. i have eaten gluten in the past three weeks, mainly in the form of sauces, and the occasional chocolate. this seems to have had no effect on me, still regular and feeling great. is this o.k.? i will never eat bread or drink beer again, items which i class as high risk. the articles i have read all deal with cases that involve people getting sick almost straight away.

does this sound like it is a typical case? a few friends of friends have celiac, and they either vomit or take a quick walk almost immediately after any contact.

hope i have covered all bases of information here about me, if i have omitted anything important, please let me know.

looking forward to all replies,

matty

hey matty welcome to the forum, Im glad you figgered out what was wrong

Ursa is right you absoulutely MUST NOT continue to eat gluten, even though you dont feel the reaction it is still doing damage. (Many coeliacs are asymptomatic or have mild or vague symptoms.)

whilest we all make mistakes and have thoses "oops"*headbang* moments, cheating is not an option.

I know the diet is hardcore and expensive but you will get used to it and in no time it will be second nature, there are good alternatives out there we just have to look (very hard)..

we are all here for you whenever you need us, good luck and let us know how you get on.... dont go mad at yourself for making mistakes.. everyone does at first.. what matters is if you learn from them.

MELINE Enthusiast
MELINE
Posted

Hi matt, I am Meline

Check out labels that do not have these guilty components (not only foods but you should check for example shampoo, toothpaste, moutwash, your wife's lipstick so that when you are kissing you are not getting any gluten etc)

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Not so frightening as it seems.....

mci289 Newbie
mci289
Posted
  • Author

thank you all for your support and words of advice

having made the decision to go gluten free we realise there is no turning back now. we both feel a lot better for it, and in just three weeks i have lost 6 kilograms( i think about 13 pounds).

the shopping is a bit of a nightmare, as the labels are confusing us a bit, but we are learning a lot as we go.

luckily i dont smoke, but i do have a new regard for smokers who quit, i am craving a hot chicken roll right now!

ursa, we are doing the cruise down from anchorage to vancouver, then in vancouver for 5 nights, banff for 4, and then niagara falls for a few. looking forward to the scenery, i have only heard wonderful things. hopefully it is a nice relaxing time in canada, as my wife has added a week in new york and 5 nights in las vegas to end the trip. that could be a bit hectic.

thank you all again,

matty

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Wonka Apprentice
Wonka
Posted

September is usually a really nice month here in Vancouver. Still warm but not hot, cooler evenings and very green (we do get frequent bouts of rain as this is a temporate rainforest). You should enjoy yourself.

Check out Zin Restaurant and Lounge when you are here (1277 Robson Street - downtown). The chef has a wife with Celiac Disease so the restaurant has a celiac friendly menu.

There are also lots of places to purchase gluten free product here (Choices and Capers are good stores for finding stuff).

I agree with the advice from the others. I didn't know that I was celiac but knew that I reacted to wheat, rye and barley (I know I'm a bit slow on the uptake) so I thought I was eating gluten free by avoiding the obvious. I didn't read labels well enough and after 3 years started getting much more severe symptoms (I was asymtomatic for most of those 3 years). When I was diagnosed with celiac I then discovered, by being a totally anal label reader, how much hidden gluten I had been ingesting. I am now really really sensitive to even minute amounts of gluten. My grandmother died of colon cancer and had the same bowel symptoms as myself. Knowing her outcome really keeps me on the straight and narrow.

AllieB Newbie
AllieB
Posted

Hi Matt,

I am recently "diagnosed" but I have known that I have trouble with gluten for the last two years. My triggered off of two pregnancies I had back to back and it sounds like yours triggered off from your accident.

I, like you, can tolerate a certain amount of gluten without any "noticeable" side effects. Or at least I thought I could. I went gluten-free two years ago, but without a diagnosis of celiac. My GI said I didn't have it, the blood work was negative. I tried it anyways as a last ditch resort to regain my health. Within two days I felt fantastic. I kept to the diet, mostly because I can't funtion well on gluten. But I snitched here and there, getting things like chicken nuggets with my kids, and an occasional piece of pizza here and there, because it didn't make me sick.

Then this year, I had two miscarriages, late ones, ones that shouldn't have happened. I pushed for a better diagnosis and they found intestinal damage due to celiac disease. I have been gluten free for 2 years and they still found damage because I had been snitching.

After I went 100% gluten-free again, I realized that I was much more senstive that I realized. So think about it before you snitch. I did, and I got burned.

Allie

mci289 Newbie
mci289
Posted
  • Author

thank you all for your help and words of support

i have eaten gluten since diagnosis, however i am starting to get the 'different feeling' in my stomach afterwards, mostly bloating. i have made the decision that i dont like this feeling, and my wife doesnt like the looks of it, lol.

no more gluten for me.

wonka, thank you for the restaurant tip, i have looked it up, we are staying not too far away, so we will definately eat there.

matty

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