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Can't Do The Biopsy

Bonnie

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Bonnie Explorer
Bonnie
Posted

Well I finally went to see a specialist yesterday. He sort of listened to me and my long list of symptoms and history.

Then he said "so what's the problem?" Does going gluten free make you feel better. I said yes, so he said why do I need anymore proof than that? Hmmmm ....

Anyway he booked me in for a biopsy and blood tests for 2nd November so I can have my proof that I thought I needed. BUT I have been gluten-free for 6 months (except for a challenge I did 10 days ago - got as sick as a dog) so I need to eat plenty of gluten up till the biopsy.

Tried to eat a wheat biscuit last night and couldn't bring myself to do it. I cannot eat gluten on purpose - I can't make myself ill again. I honestly thought I was going to die last week from eating bread. Can't afford to stay off work either!

What will the test prove? Regardless of whether I am gluten intolerant or actually have celiac disease - the end result is the same - stay away from gluten. So I'm going to cancel and just get on with living gluten-free!

I have read on this forum that some people believe if you are gluten intolerant and continue to eat gluten, it may develop into celiac disease? I asked the doctor this and he said that is absolute rubbish. He also said I am obviously gluten intolerant but he seriously doubts that I have celiac disease as I would have lost a lot of weight and have diarrhea. He also said that yes it does sound like my mother has celiac disease but as she hasn't been officially diagnosed, I shouldn't rely on that.

He really confused me - was very contradictory.

I am just going to take all your advice and listen to my body!

Thanks so much everyone for all the advice you have given me over the last 6 months. You guys are better than the so-called doctors! :lol:

Yvonne

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Guest nini
Guest nini
Posted

That Doctor def. needs to read Dangerous Grains because it very succinctly explains why the classic presentation of celiac ie: weight loss and intestinal damage is only present in the most extreme cases... and that gluten intolerance is way more common than previously thought and that it def. leads to celiac and many other health ailments. See if you can't find a copy of that book and copy the relevant info as well as the related clinical studies they reference in the book. It's by Dr. James Braly and Ron Hogan

Bonnie Explorer
Bonnie
Posted
  • Author

Thanks Nini! I have heard of this book many times. I'll definitely try and get a copy - I want to read it!

Carriefaith Enthusiast
Carriefaith
Posted
Then he said "so what's the problem?" Does going gluten free make you feel better. I said yes, so he said why do I need anymore proof than that? Hmmmm ....

:huh: How annoying...

If an official diagnosis is important to you and you cannot bring yourself to eat gluten for testing... (I understand... I could NOT go back to eating gluten now, or I would probably be in the hospital) maybe ask for a gene test to test for the celiac gene. If you have the gene and you are having nasty symptoms from eating gluten, then you probably have celiac disease.

Bonnie Explorer
Bonnie
Posted
  • Author
:huh: How annoying...

If an official diagnosis is important to you and you cannot bring yourself to eat gluten for testing... (I understand... I could NOT go back to eating gluten now, or I would probably be in the hospital) maybe ask for a gene test to test for the celiac gene. If you have the gene and you are having nasty symptoms from eating gluten, then you probably have celiac disease.

<{POST_SNAPBACK}>

Carrie, two weeks ago I would have said the biopsy was absolutely essential for me - I needed proof but after doing my own 'gluten challenge' I don't need the proof. I actually cannot believe how sick I was. It is totally baffling to me how bread could affect me like that after eating it my whole life.

This specialist I saw was recommended to me by the Coeliac Society of South Africa. If this is the best this country has to offer I'll just do it on my own! My gut instinct tells me I have celiac disease - my mother is living (barely) proof of what can happen if its untreated.

I will however have the blood tests for anemia, calcium etc. No point in doing the TTG though if I'm gluten-free.

Carrie, what is the test for the gene? Is it a blood test? If so I will request it.

Thanks for your help!

Yvonne

Carriefaith Enthusiast
Carriefaith
Posted

I know that the gene test can be done; however, I don't know if all labs will do this test. I think they could test my mouth swab or blood test. I know that Enterolab will do the test. Here are some links:

Open Original Shared Link

Open Original Shared Link

Claire Collaborator
Claire
Posted

There is so much discussion on this issue - to test or not to test. I am baffled.

Celiac is a genetic disorder. If you have it then at least some of your family members will have it also. It is important to establish genetic disorders so that family members have the option to investigate their own status and that of children in the family.

My neurologist made this point to me very strongly though I hardly needed the nudge.

I will be having genetic testing done in a week or so - to establish exactly what my problem is - whether celiac or another genetic disorder. That will be my contribution to my family - what they do with the knowledge is up to them but at least I will have given the necessary information for present and future use. Claire

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tarnalberry Community Regular
tarnalberry
Posted

The dietary challenge IS a test, so you already have done additional testing. It is a VALID test, so the question is if it's *enough* testing for you. I didn't go with a biopsy, and even had inconclusive blood results, but decided the dietary results were enough for me.

Rachel--24 Collaborator
Rachel--24
Posted
He also said I am obviously gluten intolerant but he seriously doubts that I have celiac disease as I would have lost a lot of weight and have diarrhea.

<{POST_SNAPBACK}>

Your doctor is wrong. From what I've read more celiacs have constipation than have diarreah. I don't know whether I have celiac disease or Gluten Intolerance. I think I cant have celiac disease w/out the gene but my GI says not-so. I'll probably never know "officially" what I have but I *do* know that I lost a ton of weight from malabsorption w/out ever having diarreah. There is no rule that you have to have diarreah or that you even have to lose weight. You can gain weight and have celiac disease.

Merika Contributor
Merika
Posted
He also said I am obviously gluten intolerant but he seriously doubts that I have celiac disease as I would have lost a lot of weight and have diarrhea. 

<{POST_SNAPBACK}>

Er, no. Myself, I lost a lot of weight (15 lbs) in a month, but then it stabilized and I remained that weight for 12 more years *while eating gluten*. I never had diarrhea (other than from the flu, lol). It took them 12 YEARS to diagnose me after presenting a top-notch teaching hospital with Major Celiac Symptoms - just not the ones they were looking for <_< And actually, I got diagnosed in a massive screening study out here in California - didn't ever have a doctor "diagnose" me - the tests were just randomly run.

I think you have found your own answer about whether you should test or not :)

As for your relatives, recommend they get tested. And the bonus for you is that if any of them come back positive, you can be pretty sure you have celiac and not just gluten-intolerance, lol :D

Merika

bethanyschoeff Newbie
bethanyschoeff
Posted

You said you had a blood test....Did you get a blood allergy test (very $). They test your stool, saliva, and blood. They can see how you digest things. They can discover celiac from this too. I never biopsy...only this test...and I know know now that I have Celiac. Along with many other allergies. I used to get heart burn...that was form my milk allergy. I have not had heart burn for 2 years now. When you eat bread with celiac you get a mucus forming on the lining of your intestines. It is a protective defence. You celia are on your intestines normally but with glutin intolerance they get killed so the mucus tries to protect your intestinal lining. You can get nutrients into your body properly. This can happen with other allergies as well. This kind of test is relatively new (8yrs I believe). Get this and you may not need any more proof than that.

- Bethany

pixiegirl Enthusiast
pixiegirl
Posted

I guess everyone has to decide for themselves if they need a "real" diagnoses or not. I'm mostly self diagnosed. My Dr. tested me for Celiac last year (blood test) and having never heard of Celiac I went online and had such an "ah ha" moment reading about it. I had the blood test and the following day went gluten-free. The blood test came back negative, but by the time I got the results I had been gluten-free for a week and 95% of my symptoms were gone. That Dr. told me to start eating gluten again, I changed doctors.

I paid to have my DNA tested and I have the genes for Celiac, so given the improvement I had with gluten-free diet and my genes I've assumed I have Celiac.

Fast forward to May when I got glutened every day on vacation to Florida's panhandle. Since then I have had GI issues. I saw a GI doctor last week and I'm going to have and endo. and colonoscopy in November. The Dr. said to me if I wanted a official diagnoses for Celiac to start eating gluten now. No thanks. She did say that the blood test my former doctor gave me is an older one and that one single test is meaningless, I guess it wasn't the "right" test for gluten. I'm just not going to start eating gluten again, its not good for me and I don't care at all about an official diagnoses.

On a gluten-free list I'm on (one of the ones that comes in your e-mail box... a yahoo one I think) they were talking about official diagnoses and I told the story above and one guy is really pushing the case for me to get a real diagnoses... for my kids... I've got the DNA results I'm just not eating gluten, not ever again.

But again, we each have to decide what "we" need.

Susan

Merika Contributor
Merika
Posted
On a gluten-free list I'm on (one of the ones that comes in your e-mail box... a yahoo one I think) they were talking about official diagnoses and I told the story above and one guy is really pushing the case for me to get a real diagnoses... for my kids... I've got the DNA results I'm just not eating gluten, not ever again.

<{POST_SNAPBACK}>

pfffft...."for your kids"....they can get their own test!

Merika

Guest gfinnebraska
Guest gfinnebraska
Posted

Wow... there is NO way I would get tested. I agree, Yvonne, that I would NEVER put gluten in my mouth for a month just for a test! :ph34r: NOT worth it. PLUS, your Dr. is mistaken (as said above) ~ there are just as many, if not more, of us that GAIN with celiac disease, not lose. He needs to read more on the subject. :(

I'm glad you are happy and can move on. Good luck!!

Bonnie Explorer
Bonnie
Posted
  • Author

Thanks so much everyone for your responses.

I think I have finally made peace with it all and have finally accepted my new gluten-free status. Am going to try out my new bread machine tomorrow. Really looking forward to it! :lol:

Have a great weekend everyone!

Yvonne

Guest BellyTimber
Guest BellyTimber
Posted
.....

Am going to try out my new bread machine tomorrow.  Really looking forward to it! :lol:

.....

Yvonne

<{POST_SNAPBACK}>

That's what it's all about!

I had some blood tests but not all the standard ones and my GP said to go gluten-free but not to have the biopsy.

Here an official diagnosis is important for foods on prescription and there were even frictions in our national coeliac organisation - and it is also important at work where one needs clear cut "recognised" categories of illness to get adjustments in sick leave trigger points, not that I'm not fed up with going off sick of course.

My doctor took the same attitude as yours.

A proper gluten challenge means 3 months on 4 slices bread or equivalent per day. Therefore that means that I will say to him when I feel the time is ripe, you will take active and full responsibility for the effects on my life - including but not only sick notes - both during the challenge, and for an indefinite recovery timeframe afterwards, and I'll do it.

Meantime I call it celiac disease in all but name.

celiac disease is a construct, things are done to almost all our body systems all our lives, there's no point in insisting it has only got to do with villi but if the timing is going to be got right by sufficiently knowledgeable practitioners there's no reason why not to have the endoscopy.

Incidentally at a conference I attended on 10 May some speakers said that flattening is not the only shape the villi go in celiac disease, other more "subtle" changes in shape of villi in celiac disease are beginning to be observed.

bluelotus Contributor
bluelotus
Posted

"A proper gluten challenge means 3 months on 4 slices bread or equivalent per day. Therefore that means that I will say to him when I feel the time is ripe, you will take active and full responsibility for the effects on my life - including but not only sick notes - both during the challenge, and for an indefinite recovery timeframe afterwards, and I'll do it."

I love the quote, Bellytimber. I didn't get a biopsy either and some of my docs are fine with that, others believe I should have the biopsy. If they are willing to pay me disability and finish writing my thesis while I am out of commission for months, then so be it. A-holes. I hate them. <_< Not only are they stupid, they are inconsiderate too. I am in the mood to start a revolution - anyone with me??

Guest BellyTimber
Guest BellyTimber
Posted
I am in the mood to start a revolution - anyone with me??

<{POST_SNAPBACK}>

There's been one rolling in these pages for some time now - I feel the benefit of all your viewpoints.

At some stage I'll start on the recipes

:P

Nevadan Contributor
Nevadan
Posted
Thanks so much everyone for your responses.

I think I have finally made peace with it all and have finally accepted my new gluten-free status.  Am going to try out my new bread machine tomorrow.  Really looking forward to it! :lol:

Have a great weekend everyone!

Yvonne

<{POST_SNAPBACK}>

Sounds like you are making a very reasonable choice. I wholeheartedly second Nini's recommendation to read "Dangerous Grains" (It's ~$10 from amazon .com if that's an option for you).

I sense in the tone of some of the replies to your thread that celiac disease is serious and "just gluten sensitivity" is not so serious. Read "Dangerous Grains" first and then decide for yourself. I personally think that non-celiac disease gluten sensitivity is just as damaging as celiac disease, it just has some different presentations.

Good luck.

George

Bonnie Explorer
Bonnie
Posted
  • Author
Sounds like you are making a very reasonable choice.  I wholeheartedly second Nini's recommendation to read "Dangerous Grains" (It's ~$10 from amazon .com if that's an option for you).

I sense in the tone of some of the replies to your thread that celiac disease is serious and "just gluten sensitivity" is not so serious.  Read "Dangerous Grains" first and then decide for yourself.  I personally think that non-celiac disease gluten sensitivity is just as damaging as celiac disease, it just has some different presentations.

Good luck.

George

<{POST_SNAPBACK}>

George, I am trying to locate a copy of the book here in South Africa, but failing that, I'll order from Amazon - just takes so long to get here. I ordered some Bette Hageman recipe books about 6 weeks ago and haven't got them yet.

Bobcatgirl - you gave me a good laugh! A-holes indeed!! You just put into words what I was thinking! :rolleyes:

P.S. My bread turned out like a brick! Ha ha - never mind, just have to keep trying.

Thanks guys.

Yvonne

I must say I tend to agree with you about gluten intolerance / sensitivity being just as damaging as celiac disease. My own body's reactions to gluten tell me that - there is no way we can all become so ill without it doing damage over time. Also from all the research I have done over the last 6 months, I am convinced that gluten intolerance may become celiac disease if you carry on eating gluten.

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