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Maybe-Celiac

Celikate

By Celikate
in Coping with Celiac Disease

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Celikate Newbie
Celikate
Posted

Hello all! Im kate, im 20 years old living in the UK. I've been really ill for just over a month now and the doctors have gone from, appendicitis to kidney stones to gall stones to inflammation of the stomach to a colon infection and now Celiac disease thanks to a recent suspicious blood test. Ive been to 5 blood tests two hospital trips, an xray and a scan of my belly. I'm tired. So very tired that I am hoping it is Celiac disease just so I can return to normal! Thanks to the NHS though I probably wont get my biopsy until after Christmas now and im scared ill be sick all the way through it and its upsetting! Now ive read so many documents that say to keep eating wheat to help the tests? But ive had no wheat for two days and im already feeling better. I know if i start eating like i used to im going to be ill again. Can anyone help me and give me some answers? No one else i know have gone through anything like this so im lost, luckily i have an egg allery too so im used to looking at ingredients, however it makes finding a nice type of bread to eat XD.

Thanks

Kate x

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Chad Sines Rising Star
Chad Sines
Posted

Removing gluten is a great way to see if you got it right. You might want to avoid soy and milk as well as many of us get crushed by those before we heal. If that makes you feel better, you are on the right track.

beebs Enthusiast
beebs
Posted

If you don't keep eating gluten your tests will probably come back negative even if you are Celiac. Honestly- it is up to you. Do you need a diagnosis? Or would you rather just go gluten free if it makes you feel better? Personally I want a diagnosis - but I will most likely never get one - because I went gluten free with the thought of getting tested later and doing a gluten challenge. But after being gluten free my symptoms are so much more severe when I eat gluten now that I can't do the challenge. I had no idea that would happen!!

Celikate Newbie
Celikate
Posted
  • Author

If i remove milk now will i get better quicker and still be able to drink it? My favourite drink is milk so that would hurt to do! XD

Ive done the blood tests now and id carried on eating wheat, im waiting for an appointment for a biopsy and she said "It will be weeks rather than months" to see a specialist. I would like a diagnosis but that means continuing with a gluten diet right? Even though my doctor said to start cutting back on it?

Katrala Contributor
Katrala
Posted

Now ive read so many documents that say to keep eating wheat to help the tests? But ive had no wheat for two days and im already feeling better. I know if i start eating like i used to im going to be ill again.

While wheat contains gluten, it isn't the only source.

You also need to avoid barley, rye, and oats (unless gluten-free and even then it's not really recommended at first.)

I read somewhere on this forum someone referencing the recovery from celiac being more like "slowly turning off a tap" than an immediate wake-up-the-next-day fully cured.

captaincrab55 Collaborator
captaincrab55
Posted

If i remove milk now will i get better quicker and still be able to drink it? My favourite drink is milk so that would hurt to do! XD

Ive done the blood tests now and id carried on eating wheat, im waiting for an appointment for a biopsy and she said "It will be weeks rather than months" to see a specialist. I would like a diagnosis but that means continuing with a gluten diet right? Even though my doctor said to start cutting back on it?

Only time will tell on the milk...

Katrala Contributor
Katrala
Posted

If i remove milk now will i get better quicker and still be able to drink it? My favourite drink is milk so that would hurt to do! XD

Dairy isn't necessarily a problem. It is for some people as they heal, but not for others.

While I've never had a problem with dairy, the advice I typically see given is to remove one variable at a time (and, later, to add back in things such as a dairy, soy, etc. one at a time.)

The healing process for celiac is a slow one. If you've only had problems for a month, your recovery will likely be far longer than your illness.

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sandsurfgirl Collaborator
sandsurfgirl
Posted

Being in the UK this puts you in a bind doesn't it? It's my understanding that you can't get government benefits for gluten free foods if you don't have that endoscopy right? Every time I see a UK celiac I feel so sad for them because you have to go through so much to get diagnosed and the system takes so long for you to get to see a specialist.

Positive blood test can be used to diagnose you if a doctor is willing to do that. There are no false positives on that blood test. There are lots of docs here that diagnose by blood test, my own doc and my pediatrician both do. But I don't know if you have much choice in doctors.

So now you have to decide if you can keep eating gluten in order to get a positive endoscopy. The villi start healing as soon as you go gluten free so if you cut back on gluten or go gluten free your endoscopy will likely be negative. If it was here in the US I'd say go gluten free and forget the endoscopy. Read the article posted in this forum on the inaccuracies in that thing. But since you are UK, you might have to go through the system and keep eating gluten to get the medical benefits if my understanding is correct.

Just be aware that there is a possibility your endoscopy will be negative but you MUST go gluten free regardless.

I couldn't stay on gluten for an endoscopy. I was way too sick, so we went with blood tests and called it celiac.

Celikate Newbie
Celikate
Posted
  • Author

Being in the UK this puts you in a bind doesn't it? It's my understanding that you can't get government benefits for gluten free foods if you don't have that endoscopy right? Every time I see a UK celiac I feel so sad for them because you have to go through so much to get diagnosed and the system takes so long for you to get to see a specialist.

Just be aware that there is a possibility your endoscopy will be negative but you MUST go gluten free regardless.

I couldn't stay on gluten for an endoscopy. I was way too sick, so we went with blood tests and called it celiac.

We can get gluten free foods on the NHS as I live in Wales. Thankfully prescriptions and things are free here but they're not in england! We are weird folK!! But you're right, I cant get that prescription untill ive done the biopsy. As it stands I have had the blood test and she said it "Was suspicious of Celiac disease" From what ive read on here that usually means I have it? When she told me this she also said that I needed to cut back on wheat and watched what i was eating from now until the time of the biopsy. Mixed messages! I know i wont feel immediately better but having cut back of wheat for two days now i had the best nights sleep for a long time last night. I think ill continue what im doing.

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