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I Can't Wrap My Head Around This...

Pandoranitemare

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Pandoranitemare Apprentice
Pandoranitemare
Posted

Essentially my issue is this...

I did the gluten challenge, and had my blood test, now I am having to wait till after the bank holiday weekend to make an appointment the doctor has asked me to make to discuss the results. I am expecting the worst, as I was told I would not be called in if they were normal....So I sort of feel like I am on a 'gluten count down'. I don't want to stop just yet in case they want to do any further tests (which would require me to still be eating the stuff), but I feel my gluten eating days may well be numbered....

Whilst I was doing the gluten challenge I hated it, and only ate what I had to. I generally am quite a healthy eater, yet yesterday I was compelled to get a Chinese takeaway, I knew it would make me feel horrid, and its something I would only eat once in a while, but I felt like I had to get one in maybe before it was off limits forever!

The same compulsion made me buy a bag of those soft, fresh cookies from the in store bakery at the supermarket at the weekend.

I suddenly feel like I need to have 'just one more' of the things I do like, that maybe I only eat occasionally... because there is some deadline looming which means I will never have those things again.

What I can't get my head around is the fact of one potentially one day very soon a lot of foods I have been eating are likely to suddenly be off limits. It's the same food, and all that will have changed is knowing what the cause is, as opposed to guessing and actually having a name for the reason. It is somehow driving me to make myself feel terrible in trying to have the things I enjoy one more time all in a short space of time....and of course I am aware that I am also likely to be causing more damage with a gluten overload, as it is way more gluten than I would normally even have, as my diet is normally not even that high in gluten!

I am being an idiot...and I know it, but I am finding it hard to be rational....

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Mateto Enthusiast
Mateto
Posted

I know very well how you feel! Like you, I am awaiting diagnosis. Like you, I have been eating foods PACKED with gluten, because the thought of them being "off-limits" is frightening.

For me it's the chocolate. Well, it was. I binged last week on chocolate, because I know I might not be able to have it any more. That was last week. THIS week it's going to be baked goods, I can guarantee you that. I'm already started on a chocolate cake we had for dessert Easter Sunday, and my Mom let me keep for leftovers :P It's quite big, quite delicious, very moist, and quite very well sickening <_<

Actually, craving baked goods and sweets is a small symptom that you might have coeliacs, but if you find out you DO (and I for that matter) have coeliacs, just think of those foods as poison. Because for us, they are! We can literally die. Now no, not right away, but it's not worth the pain we can go through.

Don't think yourself an idiot, that doesn't help. I started to think like that last week, but got over it when I joined this forum, and read how to deal with this.

pricklypear1971 Community Regular
pricklypear1971
Posted

I can only say I've been there and I understand.

If its any consolation (in a sick, twisted way) if you do have an issue with gluten, and it does invoke symptoms like D or C or nausea - you will probably NOT have a hard time staying away - once you make the correlation. Because when it becomes clear, it typically becomes VERY clear. And you will avoid it like the plague.

As an example: Junior Mints were my safe go-to treat starting gluten-free. I ate a ton of Junior Mints. Now, after getting semi-sick on them once, very sick a second time, and pretty sick on another mint product - I am steering very clear of mint flavored food. My reaction isn't from gluten, I don't know WHAT its from, really, but the association has been made abundantly clear to me. And while I hated the thought of losing reliable gluten-free junk food (hah!), the consequences became too unpleasant to ignore.

You'll get there. I promise. I look in a bakery window and resist the urge to run away. Not because I want to eat the stuff, but because I just don't want to be near it.

It's a process, a grieving process, I think.

Marilyn R Community Regular
Marilyn R
Posted

I don't know if UK doctors make you go for an endoscopy to confirm the blood test or not. If so, you theoretically have a reason to justify continuing to enjoy your favorites until you have the procedure.

Your post made me wonder what I'd want if I knew it would be my last meal. I thought Lobster or Stone Crab with Drawn Butter, Filet Mignon, twice baked potatoes, or stuffed peppers or mushrooms, a nice light salad with good cheese, and some kind of really good chocolate for desert. Like dark chocolate ice cream or a flourless chocolate cake or the chocolate cream pie I make in a meringue shell. I'd have fresh red ripe berries along with the chocolate.

That made me laugh because my "last meal" would be lucious, but gluten-free. For me, the cravings took under two weeks to resolve. But it took longer to get over food envy. :(:(

beebs Enthusiast
beebs
Posted

I didn't really get the chance to do the whole 'just one more' thing, I wish I did, I was really looking forward to a gluten challenge so I could eat all of my very favourite gluten laden foods for 3 months. But it does get easier, eventually you'll find cookies that are just as nice, and the chocolate thing? Most chocolate is gluten free, even the nice ones, just not the ones with cookies and stuff in them. I've found cheese corn chips which are gorgeous and salt and vinegar chips and all kinds of things. Sometimes its like - I just don't even notice anymore. Its a PITA when you are sick or tired and just want to do takeaway - but usually Indian and Thai are gluten-free - so that is ok.

love2travel Mentor
love2travel
Posted

Believe me, I get it. I made myself a list of 70 some things to have for the last time and did not stop eating gluten until the list was done. It was tough because I was not feeling ill from gluten at all! And a year later, strictly gluten free, I feel no different. The odd time I wonder what it would be like to try some gluten but I would never, ever do it. I'm scared of the damage it would do to me internally even if I did not feel ill. In the beginning it was difficult to stay motivated, though I did. I quit cold turkey right after my last bite of croissant. (I was diagnosed by bloodwork and biopsy as I was in denial and just could not believe I had it. Testing was done as one sister was gluten intolerant so I thought I may as well get tested, feeling there would be no chance of me having it. Wrong!)

Now I realize that I can make most of the 70 some things wonderfully anyway. Well, except croissants and doughnuts and I have not yet made gluten-free phyllo. And really delicious chewy bread.

If you do have celiac, just know it truly does get easier. Trust me on this. Trust all of us on this! :) We're here to help you along.

Mateto Enthusiast
Mateto
Posted

I didn't really get the chance to do the whole 'just one more' thing, I wish I did, I was really looking forward to a gluten challenge so I could eat all of my very favourite gluten laden foods for 3 months. But it does get easier, eventually you'll find cookies that are just as nice, and the chocolate thing? Most chocolate is gluten free, even the nice ones, just not the ones with cookies and stuff in them. I've found cheese corn chips which are gorgeous and salt and vinegar chips and all kinds of things. Sometimes its like - I just don't even notice anymore. Its a PITA when you are sick or tired and just want to do takeaway - but usually Indian and Thai are gluten-free - so that is ok.

Most chocolate IS gluten-free, however, in my own stupidity, I've cross contaminated my supply PLUS what I was given for Easter. Also, I don't want to buy more because it would be a waste of what I have...do Cadbury come from a gluten-free factory? I must ask them!

Anyhow, you are SO lucky you NEVER had the chance to do the "Just one more" thing. It's annoying, and actually becomes addictive. You gain a lot of water weight, not fat-weight, but water weight from the glycogen storage or whatever it is.

Cheese corn chips sound DELICIOUS, what brand are they, or are they homemade?

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Pandoranitemare Apprentice
Pandoranitemare
Posted
  • Author

Thank you all so much, your replies have made me feel so much better :)

I made the appointment to get my blood test results ..but as my GP is on holiday I can't get the results until the 24th of April! I will be trying for a cancellation appointment the week before, so fingers crossed though.

In the meantime, what you have all said has made a lot of sense, and helped to put things into perspective for me. Whilst I will continue to eat gluten (just in case of any further tests...I don't want to jump the gun and go gluten free and have to do another gluten challenge) I have been feeling the effects of my over indulgence, and I know I need to scale thing back a bit.

I still have a few gluten treats I would like to have before 'D Day" but maybe it is good that I have some time to think about the whole process and most likely accept that it is the gluten which is making me sick and that I need to take this time to say goodbye to it...

It means a lot to know that others have been through similar, and come out the other side, healthier, stronger and better for being gluten free :)

Thank you!

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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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