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Fell Off The Wagon And Don't Want Back On...


Cath724

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dilettantesteph Collaborator

I can totally relate. This diet is such a pain. If my symptoms weren't so severe, I would be back on gluten myself. I even think about it still, and I could hardly leave the house because of the uncontrollable D. How many people smoke? The consequences of smoking are more serious than celiac. How many people don't exercise and are overweight? How many people drink way too much alcohol, drive crazy, do drugs? You are no different than all of them. My doctor said that not many celiacs stick to the diet. I have no choice, and maybe it is better that way.


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Chrissyb Enthusiast

There is a gentleman that comes on here that has to eat through a feeding tube. So when I am struggling with this diet and want to whine I just think of him. Aleast I can still taste my food so who am I to complain, I should be thankful that I caught it in time that no real serious damage was done.

Yes there are times I would love to have a little powder sugar dounut or maybe go out to eat and just order whatever I want, but I can't and I feel better for it. I have learned how to make my own gluten free dairy free sauces which my whole family loves. My baking is improving, our dinners have been more tastey, not the same old boring meals as before.

My health is slowing improving, I have lost 50lbs and the longer I am gluten free ( 1 year now) I am sure it will get easier. I know we all need to vent and whine once in a while, but remember there are always others who are worse off then you are so be thankfull for what you do have.

  • 2 weeks later...
Yellow Rose Explorer

I live in a tiny town and I have found a couple of options. If I eat at the steak place I have the salad bar and bring my own dressing in my purse. They don't care at all. Steak and baked potatoes are great as long as I tell them to leave the Texas Toast off the plate. At the local mexican food place I can have nachos, and at the BBQ place I can have the meat and beans but not the potato salad, and at Dairy Queen I can have French Vanilla Moo Lates and hot fudge sundays with strawberries but don't add the nuts as there is some kind of coating on it. If you call your local restraunts and talk with the MGR tell them about gluten and ask if there is anything you can eat you will usually find they are eager to help and will look on the ingrediant list and read it back to you. That's how I found out all the things I could have. Ok now I want a sunday. HA!

I also found it very hard to give up gluten I don't think there is anyone who doesn't. One thing that helped me was someones discription of the poision shelf that her family keeps the gluten food on. I had not thought of it as poision but that is exactly what it is to us. If someone put poision in your food and you knew about it would you try it thinking it might not be very much in there and I will probably be ok. NO you wouldn't. Try changing the way you look at gluten and hopefully it won't be so tempting. It was the turning point for me. I have found just smelling it is now good enough for me but those girl scout cookies in front of everyplace is getting to me. Good thing they are not around for very long. :rolleyes:

I have lots of receipes for homemade sauces and dressings what are you fond of?

Yellow Rose

Fiddle-Faddle Community Regular
I think it would be incredibly hard to stick to the GFD if you are asymptomatic.

No, really, it's not!

I did two one-time gluten challenges after going gluten-free, and didn't react at all to either one.

That was 2 1/2 years ago. I have not been the least tempted to have gluten. I know too many people with lupus, fibro, RA, IBS, etc, and have seen where they end up. And there are enough good recipes out there (most on this site!) so that I don't feel deprived. I can make anything I want gluten-free whenever I want--and without those awful cravings that I used to get with gluten.

I LIKE being able to get out of bed and feel good. Why on earth would I throw that away?

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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
      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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