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M-SMOOTH Explorer

Recently diagnosed last week does the pain ever get better??


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cyclinglady Grand Master

Oh, yes!  It just takes time.  I know, hard to hear, but it took a lot of time for your symptoms to develop.  Most members feel noticeably better in a few weeks.  Just rest as much as possible.  Spend time learning the Gluten free diet.  There is a steep learning curve to the diet.  Want to shorten it?  Eat as much Whole Foods as possible.  Think stews and soups.  Things that are easy to digest. Eliminate dairy until you start to feel better and then re-introduce it.  Many celiacs become lactose intolerant because the enzymes that help digest lactose are released from villi tips.  Not villi, no enzymes (or at least a reduction based on patchy damage).  Do not eat out for a while!  

Hang in there!  

Fbmb Rising Star

You'll get better, but be patient with yourself. I was diagnosed in November and was lucky to not have very many symptoms yet, as I caught it early. But, that said, it still took about 6 months to feel like my gluten free diet was even doing any good. I'm still tired a lot, but I have two kids and run a non-profit. I have bad anxiety and hoped that would decrease after my diagnosis but it's gotten worse - which tells me that gluten wasn't the culprit. 

Don't eat out. At all. Try to eat as healthy as you can. Eggs, unprocessed meats, nuts, fruits and veggies are your friends for now. I agree with cyclinglady about dairy. I still go easy on that. I can do yogurt and cheese, but I'm still taking it easy on milk. Lean on the people on here for support because they're pros. There's a huge learning curve with the diet, but you'll get the hang of it. Do lots of research and be patient. It just takes time.

Ennis-TX Grand Master

Above is some great suggestions, read the 101 if you have not already and toss all your gluten items, clean out everything and make a safe living environment. I would as mentioned start off on a whole foods only diet, fresh vegetables, and meats cooked in water into stews in a crock pot are really easy to digest and can mixed up in various ways. Using crockpot liners will makes this easy clean up as well. I suggest new utensils, get rid of any scratched glass, teflon, or metal wares you have that could harbor gluten. Most plastic plates, bowls, etc will have to go. I suggest freezer paper for prep surfaces for clean work surface and easy clean up. Clean out your drawers, cubbards, fridge freezer, making sure to clean handles also. I might suggest drawer organizers to keep any think new you get from getting old crumbs, residue from the drawer on them. Go through your spices, and sauces toss anything not gluten-free. Your condiments in jars need to go, crumbs/residue from forks, knifes, spoons put them has contaminated them.

Also remove dairy as mentioned it causes alot of issues for us and go easy on spices for a while just salt and pepper for a bit. There are many other things we can help with around here if you need brand to trust etc. Feel free to ask about anything your having issues with.

M-SMOOTH Explorer

Thanks that's good to hear it gets better getting myself familiar with the diet as well ??

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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
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
    • Florence Lillian
      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
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