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RaeRae

By RaeRae
in Coping with Celiac Disease

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RaeRae Newbie
RaeRae
Posted

I have just been diagnoised with Celia disease( through blood work) after living with the misdiagnois of IBS for the past 15 years. So I am waiting to get into a Gastrointrologist for my scope,but my Dr states that I should continue eating Gluten as my regular diet until I have the final test done, which is easy for him to advise as he is not the one that is getting sick..any suggestions?

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heatherjane Contributor
heatherjane
Posted

Unfortunately, he is correct. You do have to continue eating gluten for your tests to be accurate, otherwise your body begins the healing process and makes celiac more difficult to spot. I'm guessing you don't have a scope scheduled yet? Was your doctor able to refer you to someone? I got in with my first GI appointment pretty quickly because my PCP office called them and set it up.

RaeRae Newbie
RaeRae
Posted
  • Author

Unfortunately, he is correct. You do have to continue eating gluten for your tests to be accurate, otherwise your body begins the healing process and makes celiac more difficult to spot. I'm guessing you don't have a scope scheduled yet? Was your doctor able to refer you to someone? I got in with my first GI appointment pretty quickly because my PCP office called them and set it up.

I just found out on December 23, so im guessing with the holidays in between there will be some time before I hear anything...I am trying to still eat as before but i am incorporating some gluten free products into my diet as well. Do you know if one is awake for the procedure of the scope in Canada, I have read in the USA they put you to sleep?

Roda Rising Star
Roda
Posted

They usually put you under heavy sedation through your IV. I've had two EGDs(upper scope) and a colonoscopy and my son had an EGD and they used propofol IV. We didn't remember a thing.

heatherjane Contributor
heatherjane
Posted

I went under for mine as well. (I'm in the US)

MitziG Enthusiast
MitziG
Posted

You will most likely be under. If they haven't scheduled you yet, it is time to start making yourself a pain in the rear. Call them, every day. Insist that you need in soon because eating gluten is making you ill. I remember the two weeks waiting for my biopsy took forever, I couldnt WAIT to stop eating gluten! Hope you get yours done soon!

beebs Enthusiast
beebs
Posted

Yeah- but keep eating it! Because if you don't you'll end up with a false negative. And trust me - you don't want that!

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hspichke Apprentice
hspichke
Posted

I have just been diagnoised with Celia disease( through blood work) after living with the misdiagnois of IBS for the past 15 years. So I am waiting to get into a Gastrointrologist for my scope,but my Dr states that I should continue eating Gluten as my regular diet until I have the final test done, which is easy for him to advise as he is not the one that is getting sick..any suggestions?

I am in the same boat. Mine is scheduled for Jan 13th, but my Dr said I could go gluten free a wk before.

englishrose Newbie
englishrose
Posted

Wow, you get seen quickly in the US! I had to wait two months from blood test diagnosis to biopsy, and it would have been four if I hadn't made a fuss. And this was after I waited six weeks for my blood test results because they lost them the first time :rolleyes:

RaeRae, I know how horrible it is to have to keep eating gluten. It feels like you're poisoning yourself, and you basically are. But just keep reminding yourself that this is all just temporary, your biopsy will be done before you know it and you'll be able to start healing. Keep in mind that a lot of doctors recommend a minimum intake of gluten to ensure a positive biopsy - I was told this was quite high, like four pieces of bread a day. Again, it sucks big time, but it's only a few weeks of suffering compared to the rest of your life feeling better.

Hang in there. Best of luck with the biopsy, do let us know how it goes. Don't forget to ask for sedation (or hell, general anaesthetic), I made that mistake and sincerely regret it.

mushroom Proficient
mushroom
Posted

Wow, you get seen quickly in the US! I had to wait two months from blood test diagnosis to biopsy, and it would have been four if I hadn't made a fuss. And this was after I waited six weeks for my blood test results because they lost them the first time :rolleyes:

Yes, I am currently dealing with the British-type system of medicine in New Zealand; I swear to God that they hope you die before you actually have to come in for an appointment. It's cheaper that way :P On the other hand the squeaky wheel does get greased and I squawked pretty loudly, and my GP squawked too!! but still they are going to rerun all the tests I had done in the U.S. - what is it with these doctors who don't trust anything they haven't run themselves? :rolleyes: What a waste of resources :blink:

englishrose Newbie
englishrose
Posted

Yes, I am currently dealing with the British-type system of medicine in New Zealand; I swear to God that they hope you die before you actually have to come in for an appointment. It's cheaper that way :P On the other hand the squeaky wheel does get greased and I squawked pretty loudly, and my GP squawked too!! but still they are going to rerun all the tests I had done in the U.S. - what is it with these doctors who don't trust anything they haven't run themselves? :rolleyes: What a waste of resources :blink:

I know, tell me about it, I had my blood tests run three times before I got my biopsy! (Only got two sets of results though). I was moving at the time as well - I go to uni in London and live down in Dorset in the holidays, so they were originally gonna make me wait from the beginning of June until the beginning of October to get a referral! Then the actual biopsy would have been maybe November? I had to register temporarily with a different GP and literally cry and beg to get the biopsy done in August. Honestly, bloody NHS, but that's the price you pay for free healthcare. Wouldn't swap it for the world. Man, I really hope everything gets sorted out for you asap, and that you don't exsanguinate before you get your diagnosis ;D

dnshaussler Newbie
dnshaussler
Posted

I too have recently been diagnosed with Celiacs disease, as much as I can tell you I thought it was like a death sentence, I have recently realized that I never really knew until now what it felt like to feel good. I am 40 years old and have fought cancer in my reproductive organs 3 times. After a hysterectomy and years of struggling with crazy issues and illnesses and new diagnosis, that a year later no longer seemed to aligh to how I was feeling of what tests would say..I was finally hospitalized for colo-vaginal fistula as a result of Crohns, (which my father has) and been trying to figure out what the cause of my up and down blood pressure was, the 50 lb weight gain in the last year as well as elevated liver enzymes. It was a recent biopsy that diagnosed me, and within 48 I changed my diet to Gluten-free. It has only been a few weeks of eating gluten-free, but I have realized that this change in lifestyle and eating has given me a new lease on life. I have really never felt this good.

So I hear where you are coming from and can only tell you to hang in there and do whatever you have to get through the time prior to your test. If you have Celiacs and make the changes you need to, you will not regret it. Keep calling your doctor to schedule your test, go there if you have to, but don't get discouraged, keep pushing. :-)

Reba32 Rookie
Reba32
Posted

depending which province you're in RaeRae, you may be in for a *very* long wait!

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