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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Greetings From Scotland
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14 posts in this topic

Hi all

Just thought I'd introduce myself as a new user to this forum and say hello from Bonnie Scotland (although not so bonnie at the moment - it's raining !)

Anyway - I have been diagnosed as Coeliac 3 years in Sept :angry: and I suppose I should be an expert by now but ;) ............... can anyone else help me on gaining some more willpower to maintain a gluten-free diet? I am better and do try to cut out gluten-free foods but if something takes my fancy I will eat it regardless! I find it so hard to stick to gluten-free food as I love all the things that I can't eat and it's the whole wanting something you can't have!

Does anyone have any advice on how they managed to overcome a severe lack of willpower? I am really suffering now with all the horrible symptoms and I do need to get a grip as I do know the complications that come with celiac disease.

Any tips?

Thanks in advance :D

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Hi & Welcome!

I never had any issues with willpower due to one fact: When finding out I had celiac disease, I was told to treat gluten like rat poison. Would you PURPOSELY put rat poison in your body??!! NO, of course not!! So, why would you put gluten in your body when you know it can kill you?? That thought alone has kept me on the straight and narrow!! :D I do not, will not, have never intentionally put gluten in my mouth since that day. No one can "help" you have willpower. That has to come from within and your desire to do what is best for your body. This board is a cornucopia of advice ~ everything you need to live a gluten-free life is here!! Whine, complain, get help, etc. -> we are here for you!!!!

Good luck!! :)

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For me isn't wasn't so hard either--The idea of intestinal cancers with a very slim chance of recovery were enough to make me steer clear. It makes me fearful of accidental or intestinal glutening ! I'm sure some others will have ideas though... I have also found a host of gluten-free foods I love and find it frustrating mostly only when I venture out to restaurants...

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There's nothing for it but to practice the willpower. Of course, I would encourage you to get rid of non-gluten-free items in your household if at all possible to reduce your tempation. You know the risks, so I would also encourage you to figure out why you mentally allow yourself to poison yourself. (We all do self-destructive things, the question is why... Often a different answer for each of us.)

I'm certain you have the willpower inside you, and whether it's a matter of exercising it, knocking down any barriers to it, or just locating it, I'm sure you can get there. I know it can be hard, and there are any number of tricks (like avoiding temptation, finding alternatives, diverting your attention onto other activities, etc.) you can use to get you there, but I'm certain you can do it.

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Google up "refractory celiac disease" or "refractory sprue" and read up on it. It certainly was the deciding factor for me to take this disease much more seriously than I was at the beginning......

Oh, by the way, welcome to the board! There's a great bunch of people here for support!

Take care,

Karen

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Whenever I am tempted to eat something (although I think I am starting to forget what wheat tasted like!) I think to myself something along the lines of "Is it more important for me to eat this cake/cookie/bread/pasta/possible gluten food, or is it more important for me to have a happy, healthy life." It puts it in perspective for me real fast! I also have very severe symptoms very quickly, so for me its not the willpower issue, but more of not wanting to feel sick and crappy for days.

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For me, it was being sick 9 days in a row about 4 summers ago. At that moment, I realized I must take the celiac seriously and commit myself to it. I had suffered problems for several years but it took finally getting sick of being sick to make me strong. I also try to tell myself, "it's just food; don't let it control you." :o

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Hmmm...well, for me my reaction to it is so violent and so rapid that I've no desire to eat anything that could cause that reaction. I have put things in the house that I like/want to eat, though...I've stocked up on M&Ms candies, gluten-free icecream, chips and dip, I made gluten-free brownies and intend to make tons of cookies in the next few weeks. That way if I see something that I'd like, I can just pull out my own stuff and eat it instead. Substituting instead of just not eating what you'd like to eat normally. Or try to find what it is you see that you'd like to eat at a store online that sells gluten-free stuff...just keep it around. Don't know if this helps...I'm recently diagnosed, you've known about it for 3 years! I could be singing a different story when my 3 year anniversary comes around!

Good luck!

~zipy

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Hi all

Thanks everyone for their advice and support. :) I am so pleased I have found this forum as I don't know anyone else with celiac disease and feel a bit alone at times when it comes to the diet which is probably why I don't stick to it. :rolleyes: I appreciate your time and posts. I do struggle keeping a gluten-free kitchen though as my partner is not gluten-free and I would find it quite unfair to make him stick to a gluten-free diet. However, enough of the excuses I hear you say and look after yourself, which is what I am going to definately do after hearing about your various experiences. Anyway I will take time to read through the forum as I am sure many of you have posted regarding partner support, recipies, etc. etc.

Speak to you all soon :D

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Hi Evonneda,

I am SCOTTISH too although I am living in South Africa at the moment! Got all excited to see another Scottish person with my problems.

I also don't know a single person with celiac disease.

It must be really difficult for you over there as the eating habits in Scotland are incredibly unhealthy. I struggled to eat healthily at all when I was there last.

But you really have to persevere as you cannot possibly feel as well as you should until you give up gluten completely.

Good luck - you are making me homesick!!

Yvonne

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Whenever I am tempted by anything, I just repeat a mantra over and over in my head "this is poison for my body, I will not eat it, this is poison for my body I will not eat it" After all, none of us willingly put poison into our mouths, you just have to get the same mindset when it comes to gluten containing foods. That and having a good support network (this board :D ) will get you through!

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Thanks Yvonne - two E/Yvonnes' and both from Scotland with Coeliac Disease !

We are very unhealthy us Scots and it is difficult but I am sure we all find it difficult at times no matter where we are. I feel so much positive about my illness having discovered this forum so thanks again to all. :D

Evonne

Hi Evonneda,

I am SCOTTISH too although I am living in South Africa at the moment!  Got all excited to see another Scottish person with my problems.

I also don't know a single person with celiac disease.

It must be really difficult for you over there as the eating habits in Scotland are incredibly unhealthy.  I struggled to eat healthily at all when I was there last.

But you really have to persevere as you cannot possibly feel as well as you should until you give up gluten completely.

Good luck - you are making me homesick!!

Yvonne

<{POST_SNAPBACK}>

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Hello from a Sassenach!

For me grappling with this same situation after almost 3 years is a matter of experience.

I have an intellectualmemory,a motor memory, sensory memory & so on and they are gradually being educated to get in stepwith each other.

"I will survive"

"Every day, and in every way, I am getting better, and better, and better"

My home computer broke down & they all thought I was caught upin the explosions & sent upa great wall of good wishes & prayers and I have been helped in this very area, of learning how to practice my diet right, during this period and also I have an OT coming soon to help me with the practicalities of that.

Also make sure you don't miss the "International" section of the forum for issues that are UK specific like shopping, restaurants etc etc!

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I do struggle keeping a gluten-free kitchen though as my partner is not gluten-free and I would find it quite unfair to make him stick to a gluten-free diet. 

<{POST_SNAPBACK}>

There's a compromise in the middle, where the food that you share (breakfasts/lunchs/dinners you have together) are gluten-free - no need to cook separate meals and be tempted by foods you can't have WHILE you're eating at home (which, above all others, should be a safe place). Foods you'd eat separately, snacks and times when you might eat meals not at the same time, can be a mix. In our house, my husband has his wheaty bread, crackers, and cereal, but it's a smaller portion of what's in the house, and kept in it's own place, so I don't have to search through a bunch of things I'd like to eat, but can't, to find things I can eat, but might not want to as much. Of course, it helps to keep the food to a more simple set of whole foods that are naturally gluten-free - lots of fresh/frozen veggies/produce and meats (and dairy if you can have it). (As always, this is just a way that I find easy, there are so many approaches to dealing with the diet, we all have to find what works best for us. In your case, it seems that what you're doing isn't working, so it's a matter of finding which *other* way works for you. Good luck!! :-) )

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
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      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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    • Confused
      I have not. I'll talk to my doctor about it
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