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Is My Doctor Right? Diarrhoea?

wilem008

By wilem008
in Coping with Celiac Disease

Recommended Posts

wilem008 Contributor
wilem008
Posted

Hi guys!

Im new to this forum and don't really know that much about Coeliac!

A little bit about me: Christmas last year I was diagnosed with an over-active thyroid, which I had re-tested in Feb 08 and I was apparently fine.

Then my doctor diagnosed me with irritable bowel syndrome, told me to eat more fibre and he put me on a stool softner. That was 5 weeks ago and nothing has changed really! (ive also been lactose free for about 3 months)

I still suffer from constipation, abdominal cramping, lower back pain, fatigue, headaches, bloating, easy brusing, nausea, irritabilty, axiety and depression. (the anxiety and depression is getting worse and more frequent!)

Im wondering if I might have Coeliac?

Whilst I dont eat dairy products, I still eat tonnes of bread, museli, pasta etc....

My doctor dismissed Coeliac, he said that if I had Coeliac then I would have heaps of Diarrhoea but I dont, I am (majority of the time) constipated (if im not constipated then I have Diarrhoea).

Ive been reading on forums that a lot of people with Coeliac complain of being constipated.

Is it possible I have Coeliac or is my doctor right?

Thanks for your help!

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Wonka Apprentice
Wonka
Posted

It sounds like your doctor is not keeping current. There are a pretty significant number of people with Celiac Disease who suffer from constipation. I am one.

Aleshia Contributor
Aleshia
Posted
It sounds like your doctor is not keeping current. There are a pretty significant number of people with Celiac Disease who suffer from constipation. I am one.

I agree with wonka... and I'm also having trouble getting diagnosed... I have a lot of the same symptoms as you plus a few more and the doctors just say "you can't have that you don't have diarrhea and your'e not losing weight" if you go to Open Original Shared Link there is a pie graph thing on the section for doctors (about celiac disease for doctors tab at the top of the website) and it says that before 1990 75% of those diagnosed with celiac disease presented with diarrhea... after 1990 it went down to less than 50% of those diagnosed presenting with diarrhea. one interesting thing I read was that those who were breastfed for at least 6 mo. present with atypical symptoms and will usually have the bone disease or neurological kind of symptoms that mimic other things. anyway... just thought it was interesting.... I emailed them and they said that with my symptoms I should come in and see one of their specialists.. but I'm in washington state and my insurance doesn't cover out of state :( anyway where are you at? if you are close to new york it might be worth it for you to look into going there

wilem008 Contributor
wilem008
Posted
  • Author

Thanks for responding guys!

Im actually in Australia...so cant get to New York unfortuntley! :-)

But, im having exactly the same trouble as you! I went to see my doctor today and he told me that I couldnt possible have Celiac becasue I dont have rampant diarrhea and im not losing weight!

Im so frustrated! He wont even test me for it! He thinks I have irritable bowel syndrome....Im not convinced.

Im going to get a second opinion and see a specialist asap!

veggienft Rookie
veggienft
Posted

To me, one of the toughest parts of celiac disease is the diagnosis. Doctor ignorance seems to be rampant. And even where doctors are tuned in and up to date, the latest research says that the tests for celiac aren't good enough. Doctors are capable of ruling patients in as celiacs, but incapable of ruling them out.

That means, if a cutting edge doctor examines you and says you have celiac, then you have celiac. But if he says you don't have celiac, he could easily be wrong.

The best test is the diet test. Stop eating glutenous grains. If your symptoms improve then you have celiac, and you should stay off of glutenous grains.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Irritable Bowel Syndrome is a SYNDROME, not a disease. A syndrome is just a collection of symptoms for which they haven't figured out the cause.

And isn't it interesting that the symptoms of irritable bowel syndrome are EXACTLY the same as the symptoms of celiac...

Perhaps you should email your doctor all the info on celiac that you have discovered; he is obviously not current with his knowledge (or lack thereof).

Nancym Enthusiast
Nancym
Posted

You could be a celiac or gluten sensitive. If you go through the celiac testing and come out negative, go gluten free anyway and see if that improves things for you.

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Aleshia Contributor
Aleshia
Posted
Thanks for responding guys!

Im actually in Australia...so cant get to New York unfortuntley! :-)

But, im having exactly the same trouble as you! I went to see my doctor today and he told me that I couldnt possible have Celiac becasue I dont have rampant diarrhea and im not losing weight!

Im so frustrated! He wont even test me for it! He thinks I have irritable bowel syndrome....Im not convinced.

Im going to get a second opinion and see a specialist asap!

from the celiac disease center website "Clinical manifestations include diarrhea and numerous other sequelae of malabsorption, non-specific gastrointestinal disturbance, and a host of extraintestinal phenomena, affecting the skin, joints, teeth, nervous system, energy level, and mood. The clinical presentation has changed with fewer patients presenting with diarrhea " "Symptoms that should obviously arouse suspicion for celiac disease include diarrhea and irritable bowel syndrome. In fact, 5% of those with IBS had a diagnosis of celiac disease established after serologic screening for celiac disease "

so if he thinks you have IBS then you are even more likely than just the average person to have celiac disease because its like .5 - 1% of the general population and 5% of those with IBS

I hope you find a good doctor :) I haven't been able to find one in Washington :(

Aleshia Contributor
Aleshia
Posted

Open Original Shared Link

maybe someone from this site could recommend a doctor?

ENF Enthusiast
ENF
Posted
Thanks for responding guys! Im actually in Australia...so cant get to New York unfortuntley! :-)

One the Celiac community's most respected experts, Peter H.R. Green, M.D., director of the Celiac Disease Center at Columbia University, in New York City, is from Australia.

Open Original Shared Link

Here are some more links for information and help in Austraila:

https://www.celiac.com/articles/230/1/Australia/Page1.html

Good luck.

bakingbarb Enthusiast
bakingbarb
Posted
Hi guys!

Im new to this forum and don't really know that much about Coeliac!

A little bit about me: Christmas last year I was diagnosed with an over-active thyroid, which I had re-tested in Feb 08 and I was apparently fine.

Then my doctor diagnosed me with irritable bowel syndrome, told me to eat more fibre and he put me on a stool softner. That was 5 weeks ago and nothing has changed really! (ive also been lactose free for about 3 months)

I still suffer from constipation, abdominal cramping, lower back pain, fatigue, headaches, bloating, easy brusing, nausea, irritabilty, axiety and depression. (the anxiety and depression is getting worse and more frequent!)

Im wondering if I might have Coeliac?

Whilst I dont eat dairy products, I still eat tonnes of bread, museli, pasta etc....

My doctor dismissed Coeliac, he said that if I had Coeliac then I would have heaps of Diarrhoea but I dont, I am (majority of the time) constipated (if im not constipated then I have Diarrhoea).

Ive been reading on forums that a lot of people with Coeliac complain of being constipated.

Is it possible I have Coeliac or is my doctor right?

Thanks for your help!

That was me. First off I was constipated the first half of my life. When my life took a major change they started trading off, first diarrhea then constipation then diarrhea then constipation and so on. Finally diarrhea more then anything, 4 days of that then 3 days of constipation. I had other symptoms but never knew they were related so never put it together, the diarrhea and constipation was so bad I couldn't pay attention to the other things. I did have the other things though and realized how it all fit once I read the lists of symptoms.

It was so bad. No Dr. ever came up with an answer that made it better. Over the years I would do an internet search to try and come up with the answer. Eat fiber rich foods like apples. I DID this and it never helped. I tested for all kinds of things and never found anything.

Finally in October of last year I did and internet search for causes of diarrhea and Celiac finally came up. A woman at that same time had told me here sister was being tested for Celiac! I read the possible symptoms and knew right away I had the answer. I can tell when I eat something because the same thing, constipation then days of the big D!

Death-Cab-Doll Newbie
Death-Cab-Doll
Posted

I think you have every right to get any testing done that you want. Tell them you need to get a Celiac Panel done (blood test).

That is what I did. I was sick on and off for a year and just assumed at first that it was a hormonal thing from stopping breast feeding. Being sick all of the time created major anxiety and ended up turning into full blown panic attacks and although I believed my doctors when they told me I had an Anxiety Disorder, I knew that it was not what was causing my illness....

Finally, last November I read an article about Celiac (I had never heard of it and my doctors never mentioned it). I read the symptoms and had EVERY SINGLE ONE... That day I called my doctors office and requested to have a Celiac Panel done (and to check my thyroid just to see if that was why I am underweight). My thyroid is fine, but I do have Celiac Disease... I knew something was not right and was determined to get an answer.... basically I had to diagnose myself.

You need to take control of your health and not allow your doctors to tell you what you can and can't do.

Good luck to you! I hope you get some answers soon.

nutralady2001 Newbie
nutralady2001
Posted
Thanks for responding guys!

Im actually in Australia...so cant get to New York unfortuntley! :-)

But, im having exactly the same trouble as you! I went to see my doctor today and he told me that I couldnt possible have Celiac becasue I dont have rampant diarrhea and im not losing weight!

Im so frustrated! He wont even test me for it! He thinks I have irritable bowel syndrome....Im not convinced.

Im going to get a second opinion and see a specialist asap!

Welcome! There are a few Aussies here.I am in SA. You will find a thread for us and our "cousins" across the ditch in the International Rooms (scroll down when you are on the main index page)

I went undiagnosed for 47 years!! Read my "bio" in my siggie line

The others are right . Persist with this it took a change of doctors for me to get my diagnosis 47 years after I started having problems and 38 years after I got the "IBS" tag, never once offered any testing or even suggested to me that gluten might be my problem

georgie Enthusiast
georgie
Posted
But, im having exactly the same trouble as you! I went to see my doctor today and he told me that I couldnt possible have Celiac becasue I dont have rampant diarrhea and im not losing weight!

Im so frustrated! He wont even test me for it! He thinks I have irritable bowel syndrome....Im not convinced.

Hi, I am also from Australia and was diagnosed after at least 25 years of 'IBS'. I also have Hashimotos Thyroid and it was that dx that led me to a new GP ( 2 GPs failed) and she was the one that tested me for Coeliac and low B12. My Coeliac blood test was negative but she insisted I trial the gluten-free diet and I reacted immensely and have been gluten-free ever since. Ideally - you should get a biospy before starting gluten-free - but it is very hard in Australia to get a Dr to do that. The Coeliac Society is saying that 4 / 5 Coeliacs in Australia do not get diagnosed...

Anyway - good luck ! Change Drs ...find one that understands Coeliac. I must have had Coeliac all my life and my symptoms were almost invisible.... overweight, constipated, IBS ... Have you contacted the Society ? I am a member now as you can be in Australia ( I think it applies to all states ) if you are Dr dx as 'gluten intolerant. They have great magazines, cookbooks, meetings, food shop - so try to get dx as GI at least. Good luck !! Keep fighting for what you believe !

babysteps Contributor
babysteps
Posted
The best test is the diet test. Stop eating glutenous grains. If your symptoms improve then you have celiac, and you should stay off of glutenous grains.

True!

However, if you can get the celiac panels (blood tests) done asap and also a biopsy, consider delaying the diet test until then.

Notice I say "consider" - depending on testing lab and person being tested, a gluten-free diet can sometimes lead to negative tests even if you DO have celiac.

If the diet test 'works' (you feel better), then it is hard (and perhaps risky/harmful) to reintroduce gluten just for a test that tells you what you already know.

Your own view of how important an "official" diagnosis is will be the key factor. And you can always seek a Dr. that considers the diet test enough to diagnose (these people do exist...but none of them are my Dr.)

Good luck! And may you & your gut feel better soon

wilem008 Contributor
wilem008
Posted
  • Author

Thankyou all so much for responding to me!

Its encouraging to know im not alone in all of this!

The more I talk to people the more im convinced IBS isnt my problem and that my doctor is wrong!

Im seeking a second opinion - hopefully i'll be able to find a doctor who will listen to me!

Thanks again for the encourangment, advice, opinions....and links to various websites!

Wilem

mel-gibson Newbie
mel-gibson
Posted

I think it is important that a Dr works for YOU. The test is not that expensive. I would load up on the foods that you should not eat being a celiac and then get tested.

I have had issues for years and been misdiagnosed. I had a Dr bring this up to me - which I have been told in the US is the expection.

I am getting tested tomorrow and will talk to my Dr the following friday.

He or she works for YOU

Hi guys!

Im new to this forum and don't really know that much about Coeliac!

A little bit about me: Christmas last year I was diagnosed with an over-active thyroid, which I had re-tested in Feb 08 and I was apparently fine.

Then my doctor diagnosed me with irritable bowel syndrome, told me to eat more fibre and he put me on a stool softner. That was 5 weeks ago and nothing has changed really! (ive also been lactose free for about 3 months)

I still suffer from constipation, abdominal cramping, lower back pain, fatigue, headaches, bloating, easy brusing, nausea, irritabilty, axiety and depression. (the anxiety and depression is getting worse and more frequent!)

Im wondering if I might have Coeliac?

Whilst I dont eat dairy products, I still eat tonnes of bread, museli, pasta etc....

My doctor dismissed Coeliac, he said that if I had Coeliac then I would have heaps of Diarrhoea but I dont, I am (majority of the time) constipated (if im not constipated then I have Diarrhoea).

Ive been reading on forums that a lot of people with Coeliac complain of being constipated.

Is it possible I have Coeliac or is my doctor right?

Thanks for your help!

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