Sunday, 6 January 2013

The rantings of an undiagnosed woman!

This post is a very honest and true account of my personal experiences in trying to find out what is wrong with me and why I am experiencing the symptoms that I currently have and have experienced in the past. Past diagnoses have ranged from unexplained migraines, sciatica, anxiety, stress, IBS, viral infection, asthma, unexplained skin rashes, helicobacter pylori mentioned by GP, an ultrasound on my stomach and more.

My diagnosis is also necessary as I have an 18 month old son who suffers with lactose intolerance and eczema. I want to help diagnose him with minimal disruption and testing and feel that what is going on with me is relevant. This is supported by his paediatrician.

I am not a medical professional and all of the following information and advice applies to me only. I hope that if you are reading this you have more luck and success in your own situation. I understand that many people may be reading this because they are also undiagnosed and need further help.

Comments from Gastroenterology follow up appointment 4th January 2013
You probably have IBS as your symptoms are typical
There is no test for IBS
Q: Have we ruled out other possible causes? A: You can't test for everything. Most tests are not robust and show no real answers. We could examine you head to toe with intrusive tests and not find any consistent results.
Q: What did the blood tests and stool sample show? A: Low iron level. Not really worried as women who are having periods can have this. No markers for Crohn's or Ulcerative Colitis.
Q: Can I have the lactose intolerance confirmed with testing? A: The best lactose intolerance test is drinking glass of milk and waiting to see if you rush to the toilet within an hour!
Q: Does a family history of Lymphoma have any relevance to my diagnosis? A: There are lots of types of Lymphoma, its unlikely.
Advice: to eat what suits me best, only consider dairy, wheat and stress as trigger factors, exclude one at a time for at least a month, if there is a great improvement keep off it, if there isn't a great improvement carry on eating it. The same applies to suggested medicines and therapies that are reported to improve IBS. Could take a low dose of iron to top up levels but not too regularly as it can cause stomach upsets.


Feelings
Confused
Angry
Irritated
Disappointed
Determined


Questions
Am I actually lactose intolerant?
If true problem was tackled would the lactose intolerance go away or improve?
Did the coeliac test show a true result?
Is IBS a collection of symptoms from other illnesses?
Does lymphoma have a bearing on coeliac?
Does following an IBS diet not restrict you more than excluding dairy and gluten?
What if there is still an underlying problem?
What to exclude first?
If starting gluten testing diet when to start, how much to eat and how long for?
Do I return to eating wheat and gluten?
Do I test myself with lactose?
Do I have a wheat or dairy allergy? Do I ask for blood tests for allergies? Need to see which blood tests were carried out and the results!
Do I have a casein intolerance?
What is original problem and what is secondary?
Should I exclude wheat, gluten and dairy?
My symptoms don't fluctuate with stress! They are affected by diet doesn't this indicate a different problem?
My bowel movements have become increasingly worse over recent months and haven't fluctuated or improved.

Extra Questions
How long would it take for my body to recover from sensitivity to dairy, lactose, wheat or gluten?
When re-testing for lactose intolerance does your body have to be given time to start producing lactase or should it be there from the start?

Outside information and what I do know
"anecdotal evidence is not enough to base a diagnosis on" www.feedingmyintolerantchild.com
"Coeliac disease is a common disorder in children as well as in adults. When coeliac disease is in a family there is a one in ten chance that a new baby will develop the condition" Coeliac UK
http://en.wikipedia.org/wiki/Wheat_allergy
Coeliac disease can be screened for in blood without having to eat wheat!
You can test for lactose intolerance
Excluding gluten and wheat did help
Antihistamines help with migraines and after eating wheat
My symptoms aren't normal! And they aren't consistent with IBS symptoms - tight throat pain and runny nose 10 mins after eating bread!
New Info 7/2/13 - non coeliac gluten sensitivity, http://www.foodsmatter.com/blog/non-coeliac-gluten-sensitivity-gains-full-recognition/comment-page-1/#comment-4190

Symptoms
Look pale and ill, feel tired, sick and nausea, stomach cramps, strange feeling in throat, tingling symptoms in face and hands, toilet 2/3 every morning, loss of weight, migraines, sore nose, sore bottom, reflux and acid indigestion at times, bloating, itchy eyes, runny nose, previous urticaria

Way forward
Research IBS
Wait for consultants notes to reach GP
Arrange appointment with GP to look at medical record as a whole
Request referral to immunology for further tests - dairy, soya, wheat
Look at private tests available - coeliac, allergy and intolerance
Dietitian - exclusion diets?
Probiotics
Natural remedies
Alternative medicine reflexology, acupuncture

So after a weekend of thoughts spinning round in my head I think I have finally managed to calm them. I know have a direction once again. Brainstorming and blogging has proved to be a very therapeutic process/ Your constructive comments are welcome!

2 comments:

  1. Wow completely flabbergast at the way you're case is being handled. Although having similar frustrations of my own (unallergy related). What can I say but listen to your body and keep fighting for answers.

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  2. Thank you, I'm sorry you are also experiencing problems. Its fortunate that I am as stubborn as a mule and won't give up. After all how can we give up when it affects us in our every day lives.

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