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Officially Starting A gluten-free Lifestyle- Completely Lost


xcraigx

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xcraigx Rookie

Hi again guys

So I've been to my GP as well as a Gastro guy here in South Florida, and they've both advised me to go on a gluten-free diet for 3 months based on blood results alone. I asked about the biopsy and the gastro said that he would do it but suggested trying the diet first.

So for about a week I've been attempting to eat gluten free and I think Ive done a decent job but it seems so complicated and involved for a beginner. I haven't really had any improvement in symptoms but i didn't expect much after one week.

It's made harder by the fact that I'm on the move a lot and have to eat out more often than most. I've done my best to ask restaraunt staff the pertinent questions to make sure I eat gluten-free.

I've seen people talking about the Gluten Free Bible, what is that? Is there any other extensive literature I could get my hands on? Any advice and guidance is appreciated!

Thanks for all your help,

Craig aka celiac wandering around like a blind man in a seeing world.


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Guest stef 4 dogs
Hi again guys

So I've been to my GP as well as a Gastro guy here in South Florida, and they've both advised me to go on a gluten-free diet for 3 months based on blood results alone. I asked about the biopsy and the gastro said that he would do it but suggested trying the diet first.

So for about a week I've been attempting to eat gluten free and I think Ive done a decent job but it seems so complicated and involved for a beginner. I haven't really had any improvement in symptoms but i didn't expect much after one week.

It's made harder by the fact that I'm on the move a lot and have to eat out more often than most. I've done my best to ask restaraunt staff the pertinent questions to make sure I eat gluten-free.

I've seen people talking about the Gluten Free Bible, what is that? Is there any other extensive literature I could get my hands on? Any advice and guidance is appreciated!

Thanks for all your help,

Craig aka celiac wandering around like a blind man in a seeing world.

Hey Craig,

there is great literature out there! Ask celiac3270 on this forum about helping you get the Delphia List. I've also gotten the Smart Foods list. I think you might be suprised at what you can eat! You may have to invest in a traveling cooler if your on the road alot to make sure you have something available to eat it you can't find anything

stef 4 dogs I'd help you with the delphia list, but I'm alittle computer backwards!

Guest nini

I have a huge file of lists and info and such if you would like me to e-mail it to you. I'm on a cable modem and it's a pretty big file though...

Guest stef 4 dogs
I have a huge file of lists and info and such if you would like me to e-mail it to you. I'm on a cable modem and it's a pretty big file though...

What kind of list do you have and how is it broken down? I really like the Delphia List because of how its catagorized.

stef 4 dogs

jenvan Collaborator

Craig-do you already have the safe and forbidden ingredient lists? They are a great help when shopping and trying to figure out labels. Go here: https://www.celiac.com/st_main.html?p_catid=12

VegasCeliacBuckeye Collaborator

If you want to read a good book abou the diet and its impact,

Read "Dangerous Grains"

You can get it on amazon .com for like $15

Guest nini
What kind of list do you have and how is it broken down? I really like the Delphia List because of how its catagorized.

stef 4 dogs

my file includes the Delphi list, 50 things to eat right now, restaurant menus, basic information about Celiac


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xcraigx Rookie

Thank you so much for the advice everyone! Sorry it took me ages to say thanks, been running crazy lately. I'm slowly but surely getting the hang of it although I've had a lot of upset stomachs lately, moreso than usual. Is this normal when first starting out? Also, how long until I should realistically expect to feel better? Cheerz, have a good one! :D

happygirl Collaborator

I don't own any books except one cookbook which I really don't use....pretty much everything I get is online!

An endoscopy/biopsy is usually only done if one is eating gluten....so if you go on the gluten free diet and have a biopsy, it will likely come back negative (unless you haven't finished healing). Some doctors consider the biopsy the "gold standard," so if you want to biopsy diagnosis, you need to continue eating gluten. (I'm not advocating it-I was told to start the gluten-free diet before my biopsy-and it came back negative. Just passing along info).

I did a lot of reading on Celiac.com-lots of great articles. Also, the two "main" Celiac national organizations are CSA and GIG (gluten.net). I have gotten info from them. The best advice is to not eat anything unless you know 100% what is in it (Ex: not just cream cheese, but what type and brand of cream cheese) and how it was prepared (Ex: was it a brand new cream cheese? Or has someone dipped their gluteny knife in it after making a bagel, thus contaminating it with bread crumbs).

It varies on how long it will take. But don't expect to magically feel better overnight! My symptoms did begin to subside in the first week, but took me a few months to feel remotely "normal." Your body has to get rid of the gluten, then begin to heal itself and replinsh lost vitamins, minerals, nutrients, etc. I would get sick after eating "safe" foods just because my body was still healing and couldn't process things normally yet. Then you throw in the accidental gluten ingestions, and that sets you back. Also, some people cannot tolerate lactose until they have healed. Others have no problems with it. I have problems with lactose ONLY when I have been glutened.

Welcome to the gluten free lifestyle :D Good luck and feel free to ask any questions.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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