Idiopathic Pulmonary Haemosiderosis With Coeliac Disease

I am am a 46 year old female who has just been discharged from hospital following a lung biopsy,  The doctors suspected IPH (idiopathic Pulmonary Haemosiderosis) but needed to test while I was feeling unwell.  I went from a healthy breathing adult to respiratory failure following the operation, spending 6 days in Intensive care followed by a further 7 days with oxygen. It has took me 7 more days at home to return to a form of normality,although still having very little energy  following such a traumatic time.  

The story begins in December 2009, the really bad snow, when I felt so ill I didn't have the energy to do anything, turned out I was extremely anaemic and needed 4 units of blood. I was admitted to hospital and the treatment commenced.  However I had a reaction and consequently finished up with breathing problems and coughing up blood. thus treated for pneumonia with antibiotics and given steroids as I am asthmatic.  Recovered well discharged with investigations to follow as to why I was so anaemic.  Diagnosed with coeliac disease following march, gluten free diet prescribed but it was ok to cheat occasionally as I didn't have the usual symptoms.  Everything went well, iron level returned to normal. However another bout of pneumonia happened 14 months after the first, coughing up blood, breathing difficulties feeling unwell. admitted to hospital treated again with antibiotics and steroids recovery made and returned to normal life.  Then in January 2012 another bad chest but this time only treated with antibiotics. the symptoms only left for about 3 weeks and then returned with a vengeance.  Admitted to hospital the blood I was coughing up was more than before and the consultant was not convinced that this was just pneumonia.  I asked several times if it was because I had not been good with my diet over the Christmas period, (still think this is connected) He said I was either very unlucky or there was an underling cause for these symptoms. He mentioned a disease, that could run along side of coeliac or an any other autoimmune disease, that affected the lungs. He referred me to another expert and I had to wait 8 weeks for the appointment.  

This is when I went under the knife and my diagnosis given.  Having good days in the most, only when do I start thinking of the possibilities do I get down.  I read up on the internet as much as I could but there is lots of poor prognosis' and yet I have not heard that from any of my consultants. Believe me over the last 3 weeks I've seen a lot of consultants many of them have never seen anyone with the disease only read about it. They all say it is not curable but treatable, that with the fact at the moment there is none or minimal damage with the correct drug regime for me and a gluten free diet (without cheating) I should lead a relatively normal life.  

I have yet to discover if I will return to my full health of 12 months ago, but the signs are good I just a little impatient, My family are happy that I am as well as I am, based on my condition during the week in Intensive care.   Despite this trauma, I have now got a diagnosis, with a good histology report of only minimal scarring.  I have an outpatient appointment in 1 week which hopefully I will be given a drug regime which will stop the haemaraging in my lungs and prevent such an acute attack as happened last month, sort out the anaemia and get me back on track for the healthy living I have yet to do. I hope that this gives you hope because I need to read someone else writing similar kinds of things to help me remain positive, instead of only having access to doctors notes and reading of average life spans etc.
lyndatrow22 lyndatrow22
9 Responses May 18, 2012

Hi, Linda, I have coeliac disease too, and I have been worrying that my chest was tight for a while too, seeing what you put here, has made me think it's linked, like yours is, I see my specialist in a few days, March 9th, should I wait or get to the GP?Sorry to add to your troubles, I am usually the one who likes to help others, but you are i a different position..I hope you feel well soon, J

Hey again, he has not replied me about his doctor's name and email address. I think this is the doctor's facebook :

hey Lynda, Im happy that you are doing well now. I have just dropped a message to my friend. While waiting for his reply. I would like to show you her daughter's picture here. She is doing very well now, celebrated a very happy Xmas together with her parents.

experienced lung not surrender, sorry

Alicia thanks for your response. different name as I not able to log in on old name. I am recovering well, back at work and looking over my 2 year old grandson. The steroids as being gradually reduced currently down to 9mg a day. I am really pleased with the recovery as are my doctors as they are very surrendering doctors, they are having to read up about Iph. could you pass on the doctors name and a will pass it to my consultant.
Thanks again


I wish u will check your message though. my friend's daughter has fully recovered from the same disease. he is asking for your phone number. he can introduce the doctor to u

Hey, how can i contact u. My friend said he can help u because his daughter is going very well under the medical treatment of a Singaporean doctor here

my friend's daughter is having the same disease as you but now she is getting very well under the medical treatment of a Chinese doctor. He said he is willing to share his tips with u. How should he contact u?