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dannynyc22

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dannynyc22 Newbie
dannynyc22
Posted

whats up everyone,

My name is Danny from Fort Lauderdale, Fl. just got DX with celiac approx. 2 months ago. After my DX, i started shopping at a place called Whole Foods, which is nothing but organic foods and some gluten free items. As far as i know, i've been strict with my diet but it seems like i still have minor symptoms. i know i should be asking my doctor but sometimes is better asking someone with the same issue. Any advice would be greatly appreciated.

By the way, is there anyone that knows of any celiac groups/ meetings in south florida that i could attend to???

Sincerely,

Danny

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angel42 Enthusiast
angel42
Posted

Hi!

Welcome to the forum! I love whole foods. I am there almost every day. I would be careful about some of their prepared food. I have gotten sick on more than one occasion from the prepared foods. One time they swore up and down that their eggplant did not have bread crumbs and after three people went to find out and they had already packaged my food they came back and told me that they had mixed up the signs and the eggplant did have breadcrumbs. They gave me a different eggplant dish which they swore up and down was fine and I still got sick. Most of their stuff is fine but don't count on the staff for help.

Lisa Mentor
Lisa
Posted

Danny, welcome.

You need to remember that it took some time to do some damage to your intestines and like-wise, it will take some time to heal. You may continue to have symptoms because the gluten free diet is not an immediate fix.

Make sure that you check you toiletries, shampoos, lotions, lip balm or ANYTHING that can get into your mouth. Gluten can hide everywhere.

I would recommend that you be diary light, if not off all dairy in the beginning. If you have villi damage dairy can cause the same symptoms as gluten, without the intestinal damage.

I have found that the best source of gluten free and related issues answers are here on this site. This is where the experts are. Always feel free to ask away.

dannynyc22 Newbie
dannynyc22
Posted
  • Author

Ok cool. It is nice to know all this. My doctor only told me stay off bread and pasta, but i come to find out theres alot more to that.

I appreciate all the information given to me and will make sure to keep that in mind.

Thanks a million

Danny

PS: If feels very nice to know that im not alone, and that theres people willing to give out a hand.

Guest lorlyn
Guest lorlyn
Posted

Hey Danny just wanted to hi and welcome :rolleyes: our doc told us to read on this site because he could not tell us how to live a gluten free diet. If you have any questions this is the place for answers. I have learned so much here. Whole Foods is a good place to get special gluten-free food that you cant find at other stores. Just make sure to read labels always because companies can change at any time. Good luck and let us know if you need any help.

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      By Jmartes71 · Posted

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    • trents
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      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
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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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