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More (Silly?) Questions From A Newbie!


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3 replies to this topic

#1 jo_marnes

 
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Posted 27 February 2011 - 05:13 AM

Hi everyone,

So my bloodwork says celiac, awaiting endoscopy in next few weeks, so still eating gluten but trying to get my head around all things celiac in an attempt to be in some way prepared for going gluten free. My history is that celiac was detected after a food allergy screen due to 3 occasions of stomach pain. Other than that, no symptoms to speak of. Since blood tests, periods have stopped (malabsorption or low weight - not sure), I'm aware of bloating, always thought my memory and brain fog were just the way I am.... maybe now not so sure. Anyway, a few questions I need help with please;

1) Is amount of gluten eaten proportionate to the body's reaction? I.e. If I ate something with a trace of gluten, would my body react the same as eating a bowl of pasta? Please note I do not intend to do this... I'm just assuming it will happen by mistake!

2) How much MORE at risk am I of getting some kind of related cancer than a regular person?

3) Aside from bloating, which does not happen all the time, I do not really have many symptoms. How will I know if I've accidentally eaten gluten? Once going gluten-free, do you become more sensitive to it? Or will I just never know?

And in a case of really bad timing, I'm due to go back to my homeland of the UK for Easter with this new diagnosis. 4 weeks of living with friends and family who, as yet, don't know about this and I will have to not only try and explain what it is, why I've 'only just got it' and yet also educate at the same time. DREADING this. Feel like I may as well go back with 'freak' tattooed on my forehead. I don't know enough about it to answer their questions, I won't be able to eat what they make, I won't be able to dine in restaurants where we will be taken. I won't know where to get certain products and I certainly won't have my own toaster/ utensils/ pans to use at everyones houses. What do I do (apart from cry??!)

Thanks,

Jo xx
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#2 ravenwoodglass

 
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Posted 27 February 2011 - 08:39 AM

1) Is amount of gluten eaten proportionate to the body's reaction? I.e. If I ate something with a trace of gluten, would my body react the same as eating a bowl of pasta? Please note I do not intend to do this... I'm just assuming it will happen by mistake!

For a lot of us a trace will make us just as sick. Reactions do differ for some folks though. I can't say how your body will react but it is better to be super strict at first to allow the antibodies to resolve
2) How much MORE at risk am I of getting some kind of related cancer than a regular person?

Once you have been on the diet and healed your chances of getting a celiac related cancer will be no greater than the non-celiac population.

3) Aside from bloating, which does not happen all the time, I do not really have many symptoms. How will I know if I've accidentally eaten gluten? Once going gluten-free, do you become more sensitive to it? Or will I just never know?

It is fairly common for us to have a more noticeable reaction once we have been gluten free. There are some who are not as sensitive but many times once you have been gluten free you will be able to notice a definate pattern to being glutened. Reactions can be delayed for a day or two as the antibodies can take some time to build up. Sometimes things that we might not think are related to gluten like headaches, rashes, difficulty with thinking (brain fog) fatigue may be come obviously related to gluten exposure.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 kareng

 
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Posted 27 February 2011 - 08:48 AM

there are people on here from the UK. Maybe you could post a topic asking for where & what to get. If you don't mind, tell them what city so you can get more specific info.

You can get " toaster bags" that you put bread in. You could get gluten-free bread & toast it that way. I assume they use aluminum foil? You can use it to cook with. Line a pan, cover a potato, etc.

See if this link will work. They are called Toast It. Google that for the bags. I was able to find some at a specialty kitchen store & saved shipping.
http://www.gluten free.com/index.cfm?dsp=public.products.detail&keyID=74592&gdftrk=gdfV22677_a_7c1014_a_7c3797_a_7c74592

That didn't work. I googles " toaster bags for gluten free"
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#4 India

 
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Posted 27 February 2011 - 09:08 AM

Hi Jo,

I'd recommend reading around on this board as much as possible - it's the best source of information I've found.

I live in London so do message me if I can help at all with UK advice. Labelling for gluten is pretty good over here, especially supermarket own brands. A few places - Wetherspoons, La Tasca etc - label menus with gluten-free options.

I also carry around my own food kit - chopping board, knife, snacks etc - and make my own picnics if I don't know that I can rely on finding safe foods.

Good luck!
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Self diagnosed but confirmed by biopsy
Gluten free Jan 2010
MSG free Jan 2010
Corn free Apr 2010
Soy free Jun 2010
Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems




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