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Doctor/dietician Appt Tomorrow...

Lilypad517

By Lilypad517
in Coping with Celiac Disease

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Lilypad517 Rookie
Lilypad517
Posted

Hello all. I am pretty new here. I was diagnosed with biopsy confirmed celiac a couple weeks ago, and my follow up appointment as well as a meeting with a dietician is tomorrow. I am very nervous, but hopeful for more information about my individual needs. I have been gluten free for 3 months, and feel better. However, I was still getting glutened frequently despite careful research and diligence to a gluten free DIET. I say it like that because my md suggested i check my daily medicines and voila! Gluten. Every day. For the past year I have been on them. I got them changed last week and feel amazing. My only complaint is severe indigestion after I eat. Like my stomach doesn't move the food out as quickly as it shoud, leading to fullness, burping like an old man. It doesn't feel like a gluten attack, those knock me out and put me in the bed for days! I hope it is just my body hasn't healed yet.

Any advice for my appointments? This has been the most excited about it I have been since diagnosis because I will FINALLY get some answers! Thank you all, browsing this board has been helpful in so many ways!

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Booghead Contributor
Booghead
Posted

No advice here, but good luck! B)

bonnie blue Explorer
bonnie blue
Posted

Hello and welcome, after reading this, your symptoms, the indigestion, fullness, and burping, talk to your doctor about gastroparesis (sp sorry) or slow stomach. They do have a very simple test for this, and basically you eat smaller meals 6 times a day, and they put you on a PPI for the indigestion. Again please just an observation, but be an advocate for your health. I hope all goes well for you, let us know how it all comes out. :)

Lilypad517 Rookie
Lilypad517
Posted
  • Author

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

bonnie blue Explorer
bonnie blue
Posted

I had thought that. Is it a sign I am still getting gluten? Or an effect of damage? I feel great aside from that!

Again just a suggestion, my sister-in-law has this and she is basically maintaining a good lifestyle with the dietary changes. And if your not having your regular gluten side effects I wouldnt think that you are getting gluten in your diet. Talk to your doctor about this, and your dietician they should be able to help you out. Good luck and again let me know how it turns out.

mushroom Proficient
mushroom
Posted

It could just be a combination of taking time to heal, and slow motility. It could also be that our pancreas is not producing enough digestive enzymes, and an enzyme supplement might help with this.

Make sure that your doctor is aware that he needs to check your nutrient levels if he has not done so already - things like Vit.D, B12, folate, iron/ferritin, potassium, magnesium. Also your thyroid function. These can all be affected by the malabsorption of celiac disease.

Good luck with your appointments. :)

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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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