The importance of getting the right tests done
#337835 - 11/08/08 02:18 PM
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Hi, I just wanted to share my experience of IBS and encourage any of you who haven't had all the tests available done to go and see your doctor again.
I won't bore you with my years of digestive problems because they will be similar to most of your experiences......bloated most of the time, diarrhoea, stomach cramps, some days a food will bother me and the next it's ok so it's impossible to work out trigger foods, the doctor told me it was all in my mind/stress related, eat lots of fibre etc. IBS has affected most areas of my life.
After 15 years of suffering and finally confiding in my boyfriend of 8 years that I had IBS, he encouraged me to go back to see my general practitioner. I asked to be referred to have the Hydrogen breath tests for fructose and lactose intolerance done. She was unsympathetic and told me that food intolerances change over the years and wouldn't refer me unless I had a life threatening allergy.
I left the surgery angry but determined to find help without my doctor. I already knew of this website and had purchased the EFI book. I decided to order Heather's First Year of IBS book and found that I still had not had all of the relevant tests conducted. Weeks of internet research later I found a private practitioner who could conduct the tests I needed (and I was fortunate enough that my parents and boyfriend offered to help me with the costs).
Well it turns out that my IBS symptoms can be explained by Small Intestine Bacteria Overgrowth (SIBO), severe lactose intolerance, fructose intolerance, poor sugar absorption, low in some vitamins/minerals and I have a little known condition called histamine intolerance (it affects 2-3% of the world's population) which causes digestive upsets, hay fever symptoms, respiratory problems, eczema, heart palpitations, anxiety, itching, amongst others).
I'd have to disagree with my doc that my symptoms are all in my mind  !!!! I am now following an eating plan to relieve some of the symptoms of the histamine intolerance and may need anti-biotics for the SIBO. It's only been a month and to be honest there hasn't been much improvement yet but not all of my conditions can be addressed at the same time – also it's taken over 15 years to get into this state so I'm guessing it will take more than a month to feel better!
I can't tell you how much of a relief it is to know that this practitioner could prove that my symptoms are not stress related and I can finally see a day when I might feel better.
I feel it would be irresponsible of me to give details of the eating plan I am following because I don't want any of you to self-diagnose (I have done this before myself and made my symptoms worse). Please give it some thought and if you haven't been tested for SIBO or histamine intolerance find someone who will conduct the tests.
I wish you all good health and if my posting helps just one person I will be happy!
Good luck 
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I read your interesting posting.
I suffer from fructose malabsorption and lactose intolerance too. Managing these two problems along with keeping the amount of soluble fiber in my diet higher than insoluble fiber made a big difference. There is some evidence in the IBS research literature suggesting that when you get fructose and lactose under control the SIBO may settle down too.
What advice did your doctor give for managing fructose malabsorption?
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Congrats on finally getting the right diagnosis.
Another one to definitely rule out is Celiac or gluten intolerance. I was told I had IBS for years when the problem was actually undiagnosed Celiac disease.
Make SURE that you rule out all other possibilities before resigning yourself to IBS!
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Elizabeth
all those years it wasn't IBS - it was celiac!
send me an email: liz@dopple.net
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kimberly im also uk based and trying to get my doc to tset me for stuff but he wont - its ibs and stress and they trigger each other off you need to take anti depressants and all ur problems will go away !! arrghhhhh
Please can u tell me where you found the people to do these tests cause i seem to be hitting brick walls with expense and the area i live !! xx
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Ibs sufferer for 7 years !
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There is an internationally recognized IBS clinic at University of Manchester. This clinic is a world leader in the use of diet, probiotics and gut directed hynotherapy for IBS. The director is Peter Whorwell, Professor of Medicine and Gastroenterology in the University's Medical School and Director of the South Manchester Functional Bowel Service at Wythenshawe Hospital. They treat IBS patients from all over the UK.
Here is a link to a web page with links to a number of excellent video interviews with Professor Whorwell on "Challenges: Improving the Doctor-Patient Relationship", "Diet, Eating and IBS", "Medications for Treating IBS", "Antidepressants for IBS?" and "About Hypnosis for IBS".
Perhaps you can get to see him.
Good luck
--------------------
STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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It reasurring to hear I am not the only one that has had this battle with the doctors.
When i first started suffering at around 16 I was told at one point to bring my own chair to the waiting room! Very rude! And then told only come and see me if you see blood, no diagnosis.
Went another 10 years just living with it.
Then 2 years ago i started getting upper GI issues, and many trips to the doc finally got reffered privatly to see a GI doctor, was given blood work, stool test, celiac test and heli bactor test, all came back fine - diagnosis - IBS
Moved to canada and got new doctor - upper GI continued and finally sent for a barium swallow for upper GI - All normal, told IBS or acid take nexium.
Then early this year, gut kicks off worse than ever, sudden 'D" attacks that last a few hours and tummy takes a few days to recover, back to docs, told yep you guessed it IBS,
In May all flares up again sent for more blood work, all came back normal - IBS
Recently started getting 10-14 day bouts of lots of gas, bad movements and pains like appendix, had blood work again and told as all is normal - IBS
So why do I have worry believing it, well nobody has looked inside, they all say the same thing, age versus symptoms not supported by alarm signals like blood and all blood work fine, no inflamation.
This is the hard part, we are the ones suffering and you should believe so many diagnosis, but when you feel like someone has ripped you in half it is hard to believe the body with nothing actually wrong with it could be so cruel.
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Hi Elizabeth,
Thank you for your suggestions. I had the celiac test and gluten intolerance done with the other batch of tests and they were both negative.
It really is a relief to know that I am on the right track now. I'm glad you eventually got a diagnosis
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H Syl,
Sorry it's taken me so long to reply - time difference here in the UK
I was told that the fructose and lactose intolerances should go when the SIBO is under control. I was advised that there was a different diet plan for SIBO, fructose intolerance, lactose intolerance and histamine intolerance and I couldn't possibly follow them all becasue there would be nothing left that I could eat
Because the histamine intolerance was the condition which was the most critical for me I was given this diet plan to follow to stat with.
I was advised that if my symptoms did not improve in one month I would probably need anti-biotics for the SIBO and as a result the fructose/lactose problems should lessen/ disappear.
It was a microbiologist who conducted the tests for me and he speacialises in immunology and runs a gastro clinic.
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Hi Jen,
You should definitely check out Syl's suggestion for treatment - he knows his stuff!
That hospital sounds closer to where you live and you may be able to get treatment on the NHS.
My tests were conducted in a private clinic in London - their website is www.nutritionlondon.net
It was so nice to finally be treated with respect and not have my intelligence insulted as so many other doctors have done.
Good luck with your quest to get the proper tests conducted. Maybe you could print some information out from the internet and give your GP the hospital's information stating that if she/he refers you there you wouldn't need to keep returning to see them!!!
I can't wait to return to my GP and show them my test results and I wish I was brave enough to ask why they treated me like a hypochondiac all these years!!!
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Hi Michael,
Sorry to hear that you are having a tough time with doctors. That is so rude telling you to bring yourown chair to the waiting room....I mean who actually likes spending time in doctors' waiting rooms?!
Aside from the barium meal, have you had any other internal tests done with cameras inside you? I know they said age vs symptoms suggests there will be no organinc problem but it can't hurt to be sure. Also, have you had a breath test for SIBO or lactose/fructose intolerance? These conditions can cause a lot of bloating/gas and IBS-D. Also histamine intolerance isn't widely known and only requires a blood sample to test for the enzymes that break down histamine.
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