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Gluten Challenge: Tips?!

healinginprogress

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healinginprogress Enthusiast
healinginprogress
Posted

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)

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domesticactivist Collaborator
domesticactivist
Posted

I haven't done it, but I have a couple thoughts for you.

1. How long are they having you do the challenge before the biopsy? A few days is not enough for an accurate result.

2. Please record all your symptoms and what you ate in detail. That way if you can't stick with the challenge at least you'll have something to show your doctor.

Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

Keep a record of symptoms as the other poster stated. In addition if things get bad call the doctor's office and ask to speak with either the doctor or a nurse. They may need to call you back but most will. Then give them all the gory details if you are being woken up at night by the pain and D make sure they know that. Some doctors will advise you to stop the challenge if symptoms are severe.

Googles Community Regular
Googles
Posted

When I get glutened I get nausea for multiple days afterwards (once for 3 months). My doctor prescribed an anti-nausea med to help me be able to eat, as without it I couldn't keep food down. It helped a lot. You might want to look into that for the nausea. I was going to say make sure it is gluten free, but if you are on a challenge, that might not matter.

Monklady123 Collaborator
Monklady123
Posted

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!! :)

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

Googles Community Regular
Googles
Posted

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I don't know if this is why the OP is doing it, but, sometimes people need it for accommodations, like for school or work. Without an official diagnosis from a doctor they don't have to provide those. Also sometimes it is easier for people to stick to the diet when they have an official diagnosis as it is so challenging. It is easier for some people than trying to wonder if it could be something else possibly. Also sometimes family is more accepting with an official diagnosis, and don't question that it is "in the person's head".

love2travel Mentor
love2travel
Posted

I have no suggestions, but I'm wondering why anyone feels they need a "definitive diagnosis"? seriously... if you feel good when you're off gluten and terrible when you're on it...well then why does it matter to you if you have a diagnosis? I'm using "you" in the general sense, not specifically to the OP. I don't understand why anyone would put themselves through this "challenge".

I put myself through the challenge because gluten did not make me sick at all. Nil. So, I truly did not believe I had celiac until the biopsies came back positive. So, I needed it to prove that I have the disease otherwise I likely would not have done anything about it. I frankly LOVED the challenge, getting to eat all the yummy gluten I wanted to for three whole months. I made a gigantic list of my favourites and crossed them off as I had them one last time. If I felt terrible on gluten it would likely be a very different story.

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healinginprogress Enthusiast
healinginprogress
Posted
  • Author

Thank you for the responses! Now, I am not a quitter, so I feel a little like I "wimped out", but the intensity of my migraine the 3rd morning definitely changed my mind about the "challenge". I will call the doctor on Monday and see what he says. He did, after all, give me the option. And if I was asymptomatic then I could see staying on the challenge for sure. But I puked so many times yesterday that my throat is sore and that's just not healthy. The pain and the fatigue are not worth it, either. After they do the colonoscopy/endoscopy they are scheduling me for surgery, so I'm going to need to be as healthy as possible going into that. I think this is all the proof I need that I am indeed Celiac!

Why did I want the definitive diagnosis? I'm the type of person who needs to KNOW things. I thrive on information, numbers, facts...not so much theories and probabilities. I like certainty. I know life isn't about certainty, it's just what makes me comfortable. I feel weird saying I have Celiac Disease when I don't have the data to back it up, aside from a very positive blood test and very telling symptoms. I just graduated from university, so I guess I'm used to having to prove things.

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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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