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My Haematologist Says I Should Not Change My Diet.

PaulM

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PaulM Rookie
PaulM
Posted

It's been 2 weeks and a bit since I was diagnosed by the haematologist as having Celiac Disease. I'm scheduled for an appointment in the Gastronomy Dept. next week and was told not to change what I'm eating until I see them.

 

Does anyone know why I was told not to change what I eat till then?

 

Investigating what I shouldn't eat, I found I didn't eat a lot of the banned products anyway. Only ones I do like are biscuits. not been a big bread, cake, alcohol consumer since my throat cancer. The radiation burned out my thyroid and saliva glands. As well as the cancer. 

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GF Lover Rising Star
GF Lover
Posted

Hi Paul.

 

Because gluten damages the villi of a celiac.  They will look for this damage when they take biopsies.  This is another confirmation of celiac disease.  You must be eating gluten for damage to continue, otherwise, when you stop eating gluten you start healing.  If you have been diagnosed with a blood test, it is up to you to have the additional test done.  

 

It's always great to meet a fellow cancer survivor.  Good Health does make all the difference.  

 

All the best.

 

Colleen 

PaulM Rookie
PaulM
Posted
  • Author

That sounds like I need an operation. 

 

I've had enough of hospitals. 

GF Lover Rising Star
GF Lover
Posted

The procedure is Endoscopy.  You would be awake.  The procedure is relatively quick with no hospital stay.  If you are already diagnosed with a blood test then you should have the choice.  Sometimes they want to see to evaluate damage.

 

Colleen 

answerseeker Enthusiast
answerseeker
Posted

It's not an operation. We have all had it done. You are under sedative and they put a scope down your throat to look at the small intestine and remove tissue to look at under a microscope.

The whole procedure is less than 20 min and you don't feel a thing. I was nervous for mine too. I don't do well with any sedatives but I was fine.

kareng Grand Master
kareng
Posted

Actually, due to the fact that you are over 50, they might go ahead and combine the endoscopy (looking at the top half) with a colonoscopy (the lower section) at the same time.  They put you under a light anesthesia for that.  You know you should have a colonoscopy.  When my hub had his first one at 50, they found several big pre-cancerous polyps and removed them.  They were the kind that if they had been left for a few more years, turn to cancer.

 

I know the star of some of my favorite Boxer dog photos wants you around for a long time.

cyclinglady Grand Master
cyclinglady
Posted

My endo and colonscopy were done at the same time and I was unconscious (lucky me).  I just went in for a routine colonoscopy (I asked for one since I'm over 50) and they found celiac!  

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PaulM Rookie
PaulM
Posted
  • Author

OK doesn't sound so bad, the endoscopy is uncomfortable but I can do it in a visit. The colonscopy I need to be put under due to a twist in the tube and the pain, means not eating for a few days.

 

I can go private to have that done. Or see if I can twist the camera around the bend. LOL

 

I thought as they had found it in the blood tests, I have some symptoms, I wouldn't need any more. Glad I found this forum. 

deb-rn Contributor
deb-rn
Posted

I won't have further testing, no matter the results of my blood tests.  I know how I felt when I went off gluten for a few days, and I won't go back... even if I have false negative tests.  My Dr said there would be no reason for the biopsy if symptoms decreased with diet change!  I don't need "convincing" or someone to take a biopsy every yr to see if I'm better!  The diet change is still up to YOU  and if YOU don't need further convincing, then it may not be worth it!

Good Luck!

Debbie

 

PaulM Rookie
PaulM
Posted
  • Author

I won't have further testing, no matter the results of my blood tests.  I know how I felt when I went off gluten for a few days, and I won't go back... even if I have false negative tests.  My Dr said there would be no reason for the biopsy if symptoms decreased with diet change!  I don't need "convincing" or someone to take a biopsy every yr to see if I'm better!  The diet change is still up to YOU  and if YOU don't need further convincing, then it may not be worth it!

Good Luck!

Debbie

 

 

Hi Debbie

I agree with you, all a biopsy will do is find what the blood tests have found. I'm weaning myself off gluten and will wait to see what the results are. They can do a biopsy the next time they examine my colon. 

psawyer Proficient
psawyer
Posted

Hi Debbie

I agree with you, all a biopsy will do is find what the blood tests have found. I'm weaning myself off gluten and will wait to see what the results are. They can do a biopsy the next time they examine my colon. 

But they won't learn anything about celiac disease by examining your colon. The damage caused by celiac disease is in the small intestine, not the colon.

GFinDC Veteran
GFinDC
Posted

But they won't learn anything about celiac disease by examining your colon. The damage caused by celiac disease is in the small intestine, not the colon.

 

Right, they'd need to do an endoscopy.  But if the endoscopy is months after going gluten-free, there's a good chance it won't show anything definitive.  Many people can stick to the gluten-free diet easily enough because their symptoms improved after going gluten-free, and they understand the risks to their health of eating gluten.  Another "but" though, people also sometimes have digestive problems for months after going gluten-free.  So an instant return to health does not always happen.  You need to be able to stick with the diet even if things aren't going so great health wise.

 

Another gotcha, people who go gluten-free and return to eating gluten for a "gluten challenge" to get later testing, sometimes report worse symptoms than before being gluten-free.  Sometimes their symptoms don't go away quickly after resuming gluten-free.  So, it's important (IMHO) to decide for sure that you can stick to the gluten-free diet based on the blood tests alone.  Some people can't, or rather don't.  Personally I believe the positive blood tests and response to the gluten-free diet is plenty sufficient to know that gluten is causing a problem.  Response can be any change in symptoms, including getting worse symptoms.  People who don't have problems with eating gluten shouldn't have any big changes from stopping eating it.  Gluten is not a required food for our bodies to be healthy.

 

Some countries do offer some benefits to "gold standard" (endoscopy) diagnosed celiacs, like food subsidies.  Medical studies on celiac generally require biopsy proven celiac also.  None of that may be important to you, just mentioning it for reference.

PaulM Rookie
PaulM
Posted
  • Author

I'm due for another visit to the hospital on Thursday to see the Gastronomy specialist. They might ask me to have an endoscopy and here in CZ it will be pretty fast appointment.

 

The only real change I made was cutting out biscuits, my wife made a couple of cakes with corn flour, as I didn't eat wheat flour cakes it's no real difference. Listing what I did eat with gluten products in, is a short exercise.

 

I think this problem has built up over the years and slower since I had problems swallowing. 

 

Thanks for your advice. 

kareng Grand Master
kareng
Posted

I'm due for another visit to the hospital on Thursday to see the Gastronomy specialist. They might ask me to have an endoscopy and here in CZ it will be pretty fast appointment. The only real change I made was cutting out biscuits, my wife made a couple of cakes with corn flour, as I didn't eat wheat flour cakes it's no real difference. Listing what I did eat with gluten products in, is a short exercise. I think this problem has built up over the years and slower since I had problems swallowing.  Thanks for your advice.

I'm at the International Celiac symposium in Chicago. I sampled the BEST gluten-free bread ever. It's only available in Europe. It's made in Sweden. I don't know if you can get it...but it's YUM! everyone kept asking if its really gluten-free! Www.fria.se

PaulM Rookie
PaulM
Posted
  • Author

Just back from the hospital and the scheduled visit to the Gastronomy Dept.

 

They were ready to do an endoscope. Problem was the mouth piece doesn't fit between my teeth. After the radiation on my mouth and throat, my jaw no longer drops as wise as it should and having all my own teeth, there's no room. so after a lot of messing around I didn't have one. They booked me to a different hospital in 10 days, with the right tool that can go via my nose, I have similar examinations to see my throat, this one wil be longer and get a sample. If it works.

 

Do know why they want me to have one. The biopsy now and then in 6 month will tell them how well I have progressed after going on a Gluten Free diet. They want a sample from me at it's height and one in six months time. 

 

My blood counts is 300 when it should be 8 for the elements that confirm Celiac Disease. They are 99.9% sure I have Celiac Disease and have no logical reason why a test 10 days after I start the diet will make a big difference. Especially as they are not sure the next test will work.

 

So not eating anything obvious, clearing the freezer and cupboards of what I have and going Gluten free. 

 

6 months = 182 days. 10 days = 5.4% of 6 months. So if I go 100% gluten free they will know what 94.6% of the condition is rather than 100%. And who really cares, it's what it's like in 6 months that really matters. 

 

It's free, if I had to pay. I wouldn't be getting the biopsy. 99.9 sure after a blood test is good enough. 

GF Lover Rising Star
GF Lover
Posted

That all sounds good Paul.  The re-testing will let you know if your getting any hidden gluten.  The stuff can be really sneaky.  And if you aren't having hugh reactions every time you get some gluten then you would never know.

 

Whenever a doc starts spewing numbers at me I (silently) scream in my head I AM NOT A NUMBER!  :)

 

Colleen 

GFinDC Veteran
GFinDC
Posted

That all sounds good Paul.  The re-testing will let you know if your getting any hidden gluten.  The stuff can be really sneaky.  And if you aren't having hugh reactions every time you get some gluten then you would never know.

 

Whenever a doc starts spewing numbers at me I (silently) scream in my head I AM NOT A NUMBER!   :)

 

Colleen 

 

 

1, 4,10, 32, 109, 7, 12...  Can't resist the chance to hear a silent scream from Colleen!  :D

 

 

 

@Paul,

 

Sounds like a plan Paul.  I didn't know they could do the endoscopy through the nose.  If they can't take biopsy samples it won't be as accurate.  But if damage is sever enough to see visually, and is not there in 5 months that is good.  It's nice to see progress after all.   Sometimes damage is only visible under a microscope though, and that's why they use the biopsy samples.  They rate them according to the Marsh scale.

GF Lover Rising Star
GF Lover
Posted

1, 4,10, 32, 109, 7, 12...  Can't resist the chance to hear a silent scream from Colleen!  :D

 

Dang...that scream actually came out!!!  Did you hear it Paul?  :P

eers03 Explorer
eers03
Posted

You should continue eating gluten until you do your endoscopy.  Colonoscopy is not going to reveal anything pertaining to Celiac diagnosis.  I had both performed in the same visit.  The colonoscopy was checking for polyps, the endoscopy was checking for markers of celiac disease.

PaulM Rookie
PaulM
Posted
  • Author

That scream scared the daylights out of me and woke the dog. LOL

 

This is the funny part. The place I'm going to now has a thinner tube, so this will be able to go up my nose. Like this Open Original Shared Link had it done a few times and it's easy, just a bit strange.

 

It's in the gynaecological ward. Yes go figure. LOL

GFinDC Veteran
GFinDC
Posted

Dang...that scream actually came out!!!  Did you hear it Paul?  :P

 

Dang, where are my earplugs!?  Arrghh!!!   :D

 

Dang...that scream actually came out!!!  Did you hear it Paul?  :P

 

 

That scream scared the daylights out of me and woke the dog. LOL

 

This is the funny part. The place I'm going to now has a thinner tube, so this will be able to go up my nose. Like this Open Original Shared Link had it done a few times and it's easy, just a bit strange.

 

It's in the gynaecological ward. Yes go figure. LOL

Thanks for the lovely video of the lady with a tube down her snoot Paul!  :)  Great way to start the day!  :D  Really, thanks, that was helpful.

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