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wayne1983

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wayne1983 Newbie
wayne1983
Posted

Hi there im new. Ive recently had a celiac test has im having bad diareah at the moment, weight loss, fatigue, feeling sick etc.

However my result came back negative which i was surprised. So i want to know can i go back to my doc and request a biopsy or colonscopy to check has i want to get better.

Since yesterday i have eaten some gluten free food as a trial (yeah i know im not supposed to)!, but i feel really down in the dumps and have never felt so low in my life. Im just ending up crying a lot as im scared and want to get better and active again, but the inconclusive results have left me in limbo!

So any advice from people with this awfll thing let me know, i feel so down, thanks people

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood work came back negative as well, but the endoscope gave me a positive biopsy for Celiac. The blood tests aren't always accurate. Press for the endoscope and be sure to request at least 4 samples be taken(more is better).

It's also possible that you are gluten intollerant. You will get many of the same symptoms, but not villi damage.

Once the tsting is done, go on a strict gluten free diet for a couple of months and see how you feel.

There could also be other food intollerances at play here too. Dairy and soy are at the top of the list, but there are others.

Unfortunately, we have to do our own detective work with these issues. The Dr.s just aren't trained to recognize Celiac disease, as it is treated as a rare disease in most medical schools.

Keeping a log of what you eat is very helpful, and make a note if you get a reaction to a food.

Good luck to you..and please know most of us have felt the frustration you are feeling now. It gets better!

wayne1983 Newbie
wayne1983
Posted
  • Author

Thanks bubbas mom, ive emailed about private health and the costs as im willing to pay for it as i dont want to wait. Im really off my food lately and cant eat too much.

I am keeping a diary so that ive got a record. Many thanks for your kind words bubba.

eatmeat4good Enthusiast
eatmeat4good
Posted

Sorry you are feeling so bad. I know it sucks. If you want the testing you have to keep eating gluten to have the tests be accurate. But...if you think this is your answer, you can just go gluten free. Your moods can be seriously effected by gluten. Part of why you may be feeling so awful. Welcome to the board and ask all the questions you want. Everyone is very helpful and we know what it is like to feel like you have the flu all the time. It gets better, but you do have to be very strict about it. Good luck.

wayne1983 Newbie
wayne1983
Posted
  • Author

Sorry you are feeling so bad. I know it sucks. If you want the testing you have to keep eating gluten to have the tests be accurate. But...if you think this is your answer, you can just go gluten free. Your moods can be seriously effected by gluten. Part of why you may be feeling so awful. Welcome to the board and ask all the questions you want. Everyone is very helpful and we know what it is like to feel like you have the flu all the time. It gets better, but you do have to be very strict about it. Good luck.

Hi, ive sent some emails for quotes for private endoscopy and before it i will make sure i eat plenty of gluten (even though i dread been worst!). I just want it all sorted, and want a diagnosis, and im hoping going private may speed the process up, many thanks.

stellinpa Newbie
stellinpa
Posted

Hi there im new. Ive recently had a celiac test has im having bad diareah at the moment, weight loss, fatigue, feeling sick etc.

However my result came back negative which i was surprised. So i want to know can i go back to my doc and request a biopsy or colonscopy to check has i want to get better.

Since yesterday i have eaten some gluten free food as a trial (yeah i know im not supposed to)!, but i feel really down in the dumps and have never felt so low in my life. Im just ending up crying a lot as im scared and want to get better and active again, but the inconclusive results have left me in limbo!

So any advice from people with this awfll thing let me know, i feel so down, thanks people

I'm sorry you are feeling so bad. It is very frustrating to feel sick and have no answers as to why.

Going on the diet seems very difficult but you will find it really isn't as bad as it sounds. There are lots of Gluten Free substitutes for your favorite foods. There are more recipes available than you could make in your lifetime. It may sound weird but I have enjoyed finding alternatives. I have found that gluten-free recipes and products taste really good, not like diet versions food which can taste lousy.

I hope you can get some of those answers soon. :D

wayne1983 Newbie
wayne1983
Posted
  • Author

Thank you, at the moment though i think ive got to stick with gluten untill my test. However i intend in going private so hopefull very quickly, thank you. :)

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St4r Newbie
St4r
Posted

It's not so strange to find negative blood test in an adult person...only a colonscopy often reveals this disease...

My advice is to eat normally the food containing gluten because in this way there isn't the risk to distort the biopsy's result...

kareng Grand Master
kareng
Posted

It's not so strange to find negative blood test in an adult person...only a colonscopy often reveals this disease...

My advice is to eat normally the food containing gluten because in this way there isn't the risk to distort the biopsy's result...

That is incorrect. A colonoscopy does not diagnose Celiac. You need an endoscopy with multiple biopsies to have any chance of finding Celiac damage. A doc might do a colonoscopy at the same time to check for other problems.

wayne1983 Newbie
wayne1983
Posted
  • Author

As ive said on other thread, im going to docs tomorow for a referal, and im insisting on one!. Only trouble is if i cant get private (due to costs), how long will i be waiting on nhs, can i ask to try and get in sooner, as i am not great currently?. Many thanks you kind people, all the best.

kareng Grand Master
kareng
Posted

As ive said on other thread, im going to docs tomorow for a referal, and im insisting on one!. Only trouble is if i cant get private (due to costs), how long will i be waiting on nhs, can i ask to try and get in sooner, as i am not great currently?. Many thanks you kind people, all the best.

I'm in the US so I don't know how your system works. I would think you could certainly ask to get in on a more emergant basis. Perhaps there is a way to be put on a list incase someone cancels? Or call every day to see about a cancellation. Sometimes over here, going to the emergency room, especially a teaching hospital, will get you seen sooner.

wayne1983 Newbie
wayne1983
Posted
  • Author

I'm in the US so I don't know how your system works. I would think you could certainly ask to get in on a more emergant basis. Perhaps there is a way to be put on a list incase someone cancels? Or call every day to see about a cancellation. Sometimes over here, going to the emergency room, especially a teaching hospital, will get you seen sooner.

Im not sure but i will ask. Its not fair really is it putting people waiting when they are clearly sick.

I know resources are spread thin, but people come first surely?.

I wouldnt ever go to a doctor to waste there time, im 100% ill currently.

Can i ask though ive been feeling off my food last few days and not eaten much, now will this give me a false reading again on biopsy?

Im trying to eaten something as ive got to, but im more or less forcing it down, thanks. :)

St4r Newbie
St4r
Posted

Oh yes, sorry, it was a big mistake! I intended to say an endoscopy not a colonscopy...

kareng Grand Master
kareng
Posted

Oh yes, sorry, it was a big mistake! I intended to say an endoscopy not a colonscopy...

I like to make sure that is correct. There are a lot of doctors that don't seem to know that fact.

wayne1983 Newbie
wayne1983
Posted
  • Author

Ive just been to toilet and there was blood, im sat here and im crying, im so scared now.

I hope im going to be ok, im devasted.

St4r Newbie
St4r
Posted

Fortunately we had a positive experience with the doctors and we keep up a good meeting with the gastroenterologist and with the pediatrist ( because it' s my daughter to be coeliac )...but I know some people with a lot of problems caused by a delayed diagnosis because many doctors don't face the symptoms in the correct way...

kareng Grand Master
kareng
Posted

Ive just been to toilet and there was blood, im sat here and im crying, im so scared now.

I'm assuming it's probably bright red on top of the poop? That's usually not as disturbing as the black kind in the poop. As long as you aren't sitting on the toliet with blood rushing out, you are OK. Did you strain? You can get a little tear or cut when that happens. You could also have a hemmoroid. Wipe off gently, with some water. Then dry gently with some toliet paper. A shower or bidet is even better.

I'm eating breakfast and discussing poop! That's one of the things my family finds annoying. :blink:

wayne1983 Newbie
wayne1983
Posted
  • Author

I'm assuming it's probably bright red on top of the poop? That's usually not as disturbing as the black kind in the poop. As long as you aren't sitting on the toliet with blood rushing out, you are OK. Did you strain? You can get a little tear or cut when that happens. You could also have a hemmoroid. Wipe off gently, with some water. Then dry gently with some toliet paper. A shower or bidet is even better.

I'm eating breakfast and discussing poop! That's one of the things my family finds annoying. :blink:

There was a lot of blood. And the poop is all water. Im so scared now, and fearing the worst. Thanks karen though.

kareng Grand Master
kareng
Posted

Lets be calm. Have some water. Relax. Blood has a way of looking like a lot & spreading out in the water. If it continues another time or 2, you might want to go to the Emergency room. Take a picture with your phone to show the doctors.

I'm treating you like you were one of my boys. Of course, I would have a look at the toliet products if they were at home.

What have you eaten in the last 12-24 hours? Anyone around you been sick with a stomach virus?

wayne1983 Newbie
wayne1983
Posted
  • Author

Lets be calm. Have some water. Relax. Blood has a way of looking like a lot & spreading out in the water. If it continues another time or 2, you might want to go to the Emergency room. Take a picture with your phone to show the doctors.

Thanks karen, im begining to wonder if its colitus?. There going to have to do something quick, im really shook up now. :(

wayne1983 Newbie
wayne1983
Posted
  • Author

I ate some rice last night not much though. Ive been well off my food lately

kareng Grand Master
kareng
Posted

I ate some rice last night not much though. Ive been well off my food lately

So...you need a plan of action.

I say call for a doctors appointment. Tell them blood gushing, unable to eat for days, .... Or you could head to Emergency. If you become dehydrated, definitely go to the hospital.

Do you have a friend, spouse, parent that could come over? Preferably someone who hasn't seen you for about a week? Have them look at you and see how bad they think you look. Sometimes we need someone else to help us see and think clearly.

You will be Ok. Whatever the diagnosis. You will do what you need to do.

St4r Newbie
St4r
Posted

Ive just been to toilet and there was blood, im sat here and im crying, im so scared now.

I hope im going to be ok, im devasted.

I had this same problem and after the colonscopy the doctor found some haemorrhoids ,he also said me that the coeliac disease can cause this symptom and an endoscopy was necessary if he hadn't found anything. But in cases like this more clinical tests are always necessary to exclude all possibility of doubt about other diseases such as simple inflammatory problems ( for example irritable bowel syndrome ).

Don't be so afraid but tell this to your doctor...

wayne1983 Newbie
wayne1983
Posted
  • Author

So...you need a plan of action.

I say call for a doctors appointment. Tell them blood gushing, unable to eat for days, .... Or you could head to Emergency. If you become dehydrated, definitely go to the hospital.

Do you have a friend, spouse, parent that could come over? Preferably someone who hasn't seen you for about a week? Have them look at you and see how bad they think you look. Sometimes we need someone else to help us see and think clearly.

You will be Ok. Whatever the diagnosis. You will do what you need to do.

Yeah ive got someone to hand. Im going back to docs tomorow as i say, and even though im not really good, im going to 'lay it on' and demand to get seen quicker for a prognosis. Thanks to you and everypne with support.

It was so heartbreaking to experience it though and i want to get to the bottom of my trouble quickly.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I know seeing blood is scary(been there), :o but it can be caused by a number of things. No need to panic. Maybe it will bump you up on the waiting list for your tests?

Be sure to stay hydrated, and if you don't feel like eating, don't. Maybe something like applesauce would sit in your system ok though?

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