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ukdan

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ukdan Rookie
ukdan
Posted

So after what feels like two long months my endo/colonoscopy is tomorrow and to be honest I can't wait!

This challenge alone has been enough to convince me that gluten obviously doesn't agree with me and I fully intend to remove every trace of it whatever the results.

I'm not really seeking advice, more just sharing my experience for anyone in the same boat and wondering whether to test or not. For me it has been rough but also for my peace of mind I also wanted to make sure there is nothing more sinister going on.

Is it wrong to be hoping it to be coeliac?! I know its not fun sometimes but I'm quite prepared for going gluten free again with the advice I've picked up on here and looking forward to getting my life and health back on track!

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youwillrise Rookie
youwillrise
Posted

I kinda feel the same way. I'm hoping it's celiac because I can make lifestyle changes and be in control...and eventhough ill always have celiac (IF I do have it, I mean), it makes a difference knowing that I can do something to reduce the crazy symptoms and actually feel good. of course, i'd rather not have any disease, but if I'm gonna have one...I wish it to be one that I can fix and if I can't "fix" it...id like to be in control of it.

Best wishes with your endoscopy...hope all goes well! I'm still in the blood testing phase. I've been thinking of the possibility of an endoscopy...it scares me. Haha. I'm such a wuss. I'm not sure ill have the GUTS to do it...

Yeah, I know...cheeeesy.

Ninja Contributor
Ninja
Posted

I'm right there with you

ukdan Rookie
ukdan
Posted
  • Author

I definitely understand what you mean youwillrise about control which is probably why I'm hoping for celiac/gluten sensitivity rather than anything else!

I had my blood test earlier in the week, my doc has been very understanding and arranged all the tests around the same time to limit the inconvenience so in theory I'll get all my answers in one go. Will let you know what happens!

tennisman Contributor
tennisman
Posted

I think it's wrong to hope you have Coeliac disease because it really is a horrible disease but I can understand why you want it so you can find out what's wrong and get better :) Good luck !

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I understand wanting the Dx. It lets you put a name to your health issues..and gives you a treatment plan. Much better to know and control it, rather than go through years of ill health, lots of useless tests, and the opinions that you are a hypochondriac.

The scope isn't a bad test to have. You don't feel a thing.

Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

Good luck with the scope. I hope you get some answers but do keep in mind that false negatives are fairly common so do try the diet strictly after your scope is done. You don't need to wait for the results.

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ukdan Rookie
ukdan
Posted
  • Author

The scopes went fine and the gluten free diet (take 2) has started! The doc said it all looked clear but took biopsies to look at 'just in case' *rolls eyes*.

Will see if they say the same when they actually look at the biopsies properly, although apparently that may not be for another month- the wonders of the NHS!

youwillrise Rookie
youwillrise
Posted

Glad to hear! Here's to you and your health. ; )

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    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
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    • SamAlvi
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      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
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