I thought IBS was linked
Posted , 5 users are following.
I had my first visit to the consultant yesterday and feel bemused today. He thinks my abdo pain is unrelated to Haemochromotosis and initiating endoscopy and colonoscopy. Isn't the IBS link well documented? I'm frightened it's something else now! I also have rgt quadrant pain. He was nice enough, but I feel unsupported when I feel so ill, there was no reassurance, no mention of genetic testing for my daughters, no diet advice. I feel I've been left hanging! I have pain every morning until I eat, then it subsides a little. I would be interested to hear anyone else's experiences of suffering abdominal pain.
1 like, 8 replies
sheryl37154 joyce1959
Posted
We with haemochromatosis are prone to Helicobactor Pylori which causes ulcers and other various symptoms because it thrives on iron. Your dr is doing the right thing to investigate. It could be tested with a breath test (not always successfully) and a blood test (don't know about its accuracy), so the endoscope is more thorough. If it is HP, it can be treated with antibiotics. Sometimes it returns.
I find it best to eat something first thing, e.g. a rounded tablespoon of greek plain yoghurt.
IBS is a name given for something they have not yet identified and in a lot of cases, they don't bother to if patients are happy to be told they got something. It is like CFS, another name for something they can't be bothered working out. They are symptoms of something else, not diagnoses.
If you have genetic haemochromatosis you should insist on genetic testing for your daughters, unless they are less than 18 years of age - then they usually have to wait till they are old enough.
As for diet, look for Cheryl Garrison's "The Hemochromatosis Cookbook" in your library or ask them to get it in for you. It will assure you why you don't have to eliminate foods with iron (there isn't any - well some, but you can't live on them!).
All haemochromatosis is not equal. Educate yourself about haemochromatosis and be your own advocate - ask questions and be assertive if your dr is not providing enough information.
Good luck!
joyce1959 sheryl37154
Posted
Hi Sheryl thank you for your reply! I was tested for HP not that long ago and it was negative. I've started taking probiotic again, so hopefully this may help. It would seem there aren't any NICE guidelines for this condition yet which would set a quality framework for assessment. I'm a practice nurse and always worked by PGD's and guidelines to provide consistent quality care. I'll see what happens on next visit when I go back for the results of scans etc.
sheryl37154 joyce1959
Posted
I am not from the UK but I have heard of the NICE guidelines for menopause. There was a nurse on the menopause forum who was so totally stuck to the NICE guidelines, she would tell women they could not ask for other tests because it was not within the guidelines. I don't think I would like it for haemochromatosis. There is enough denial and myths as there is.
I recently spoke to two Professors who were involved in the setting up of the guidelines for haemochromatosis in Europe and it is so restricting about who could be treated bulk billed and how and those that could not. However, personally, they treat their own patients with an individually tailored program. You may not get this with all drs and haemotologists because they may stick rigidly to the guidelines.
It sounds like your dr is checking you out thoroughly even if he does not have communicative skills. I would keep questioning for my own information.
I have also found that some of us don't digest starches very well. I have eliminated almost all sugars and starches (some creep in - it is inevitable) and I know it when I have eaten them. Check out what you are eating in that regard and do some trial and error.
It has been found to reduce fatty liver, that elimination of sugars and starches is the thing to do. It is not from fat - good fats, anyway, are good for us.
joyce1959 sheryl37154
Posted
Hi Sheryl thanks for that, I am going to try the no sugar and starch attack. I have started to watch what I'm eating to give me optimum health. I've also started taking magnesium to help me sleep. I started two nights ago and wow it works! I felt so much better yesterday...for a while anyway. Can't wait for my first vs and to feel better! Take care x
jan93765 joyce1959
Posted
I don't know if this is relevant, but I had been seeing GI doctors for almost ten years prior to being diagnosed with hemochromatosis. Can't even tell you the number of tests I had! My hemotologist said that she suspected that the iron stores in the pancreas were causing digestive issues. It hasn't been confirmed, but it is a different interpretation.
joyce1959 jan93765
Posted
sheryl37154 jan93765
Posted
Brummiegirl70 joyce1959
Posted
I was diagnosed with IBS 25 years ago
Along with crohns disease & ulcerative colitis
So I do think there could be a strong link
I have always been anemic till 3 months ago
Now I've been diagnosed with the gene haemochromotosis
Though I had micro eblasion 8 years ago which stopped my periods
I believe it's only since they stopped that the haemochromotosis has now been detected
And have recently researched the illness & found that most of my symptoms are down to the illness itself
Ie , Hair loss of my eyebrows, Severe cramp
Poor eyesight , weak bones
Severe fatigue, Severe stress ,
Unable to sleep
They are all linked sadly