In the Beginning...

[Cherindi]

Blogging is not something I usually do so if it is boring, well first of all, I am sorry and secondly, feel free to tell me!

Well it is 4am and I can;t sleep so I thought I would bore you to sleep if you have the same problem. I can't sleep because of pain in my chest (I have a terminal heart and lung disease as well as being Coeliac which is not terminal!!). At present I have a chest infection and having had the ambulance out last night, I nearly ended up in hospital but, hating the place, I refused to go! However after having a very nasty asthma attack (I have Chronic Obstructive Pulmonery Disease, 'C.O.P.D', which includes asthma) I am suffering the quicyquonces of the attack so my chest hurts now! Anyway, enough of the POMs (Poor Old Me's) I shall now get on with the real reason I am blogging!

I have been living on a gluten free diet since I was diagnosed as Coeliac when I was nine after a long battle with the local GP who insisted to my mother that there was nothing wrong with me and that she was being neurotic! The fact that I looked like I was starving to death seemed to bypass him. I look back at pictures now and can see that I looked like I had spent all my life in a Concentration Camp!!! I have no idea why the GP couldn't see that there was something very obviously wrong with me and I think that nowadays someone would have called in the Social Services thinking that my mother was neglecting me! Eventually he got so fed up with her weekly (or more) visits he referred me to a Consultant. He obviously told said Consultant what his views were so we got the same treatment from him! He too seemed to be blind! However, after several visits, he told my mother that he was going to admit me to hospital for tests and said (and I quote), "...if there is anything wrong with that child I will eat my hat...!!!". I spent a very unhappy week in hospital undergoing all sorts of tests (who, at age nine, enjoys daily blood tests and Barium meals to see if there is any blockage in my system via xrays?), and eventually had a biopsy done on my small intestine. A month later we were called in to see the Consultant and when he had finished telling my parents the results (no apology at all for his treatment of my mother), my dad, having come prepared, reached into his pocket, took out a packet of salt and one of pepper, threw them on the desk in front of the Consultant and said, "START EATING MATE!!!" The Consultant also admitted that had I been left for one more month I probably would have died of malnutrition as all these tests had also shown calcium, iron and various other deficiencies had been flagged up in the many blood tests I had endured! One thing missing from his report...absolutely NO APOLOGY!!!!!

So, I was put on to a Gluten Free diet and my life changed within three months as I began to thrive at last! I stopped being tired and unable to concentrate, I also stopped being sick after every meal. Gone were the stomach aches, squits, bloated tummy, headaches and all sorts of other symptoms that I'd had before. However it took two years or so for me to "catch up" with my peers in growth, puberty etc, therefore I didn't 'develop' with the rest of my year and got bullied horribly for that! While all the other girls were growing boobs and all that, I still looked like I should be in Primary School!! I took to stuffing tissue paper inside the bra that I had persuaded mum to buy for me. Soon got found out though as we all had to take showers after P.E. and someone pointed out that when I took off my bra my boobs disappeared! Plus, said 'boobs' fell on the floor in the shape of toilet paper...oops! Even more bullied after that! Got called names like 'ironing board', toilet roll holder, titless etc. What a joy my life was, as if it hadn't been bad enough before!

Well, that is enough to be going on with...YOU CAN WAKE UP NOW!!!!! I am going to try to sleep! TTFN, back later if you can bear it!

Cherindi.

[philaustin]

I think there are many other coeliacs with a similar story to tell, Cherindi, and for all of us who have been diagnosed there are three others who have the symptoms and are yet to be diagnosed, either because they haven't seen a doctor about the problem or they have been misdiagnosed. Good luck with the heart and lung problems, which sound very serious. Could they have been caused by the malnutriton?

[Cherindi in reply to philaustin]

My Drs have no idea why I have these conditions but it could have been down to malnutrition I suppose.

[Hidden]

I'm sorry that you have such serious health conditions Cherindi, I have a friend who is waiting for a lung transplant and they need an oxygen cylinder to help them breathe. Also I think that your allotment is of great benefit to you and obviously gives you comfort and satisfaction, so good for you.

I think that Phil has hit the nail on the head here because the symptoms of CD are the same as stress and how many people go to the Dr's suffering from stress? And the sad truth is that one of the side effects of a coeliac ingesting gluten is irritability.

Looking on the bright side the more coeliac that are diagnosed the more familiar with the conditions medic's are becoming.

And I hope the chest infection gets better soon.

[Cherindi in reply to Hidden]

I too am on 24 hour oxygen. I have an oxygen "backpack" which I refill each day I go out from a big liquid cylinder which gets replaced every two weeks. Without it I would be stuck indoors.

I do wish that Drs would take people more seriously and not palm them off with 'oh, it is just a virus'...etc. A friend died of Cancer because her Dr insisted that the lump in her neck was due to a virus. By the time he did a blood test (at her request) the Non Hodgkinsons Lymphoma was too far gone and she died a month later! If he had taken notice of her five months earlier she could have been saved! GPs can be such idiots sometimes and if you insist they sometimes get irritated with you and ignore you further.

I have to watch these chest infections as they turn on me and I end up in hospital before I know it!

[FionaGFG Administrator]

Hi Cherindi thanks for your post. It's great to hear that your Mum's perseverance eventually got the right diagnosis. Sadly there are still a number of Doctor's that think the way yours did.

Ref the COPD are you aware that some hospitals are doing research into this with regular check ups? I enlisted my Dad into one and it's been very beneficial for him - there's no drug testing just monitoring of the condition.

Contact for more info:

Dr Alex J Mackay

Clinical Research Fellow

Academic Unit of Respiratory Medicine

UCL Medical School, Royal Free Campus

Rowland Hill Street

London NW3 2PF

UK

[e-mail]

Tel: [phone] extn 34308

Fax: [phone]

I know you don't live in London - but it's worth asking them if they'd accept patients outside or if they know of similar research where you are based.

PS ref not sleeping - this can also be a sign of very low vitamin D so it's always worth getting that checked out. Although as you've mentioned it might be due to the other health problems. Best wishes.

[Cherindi in reply to FionaGFG]

Fiona, thanks for the info...may well follow that up. Interesting you should mention the low Vitamin D as I recently had a Dexa scan which showed crumbling hips and spine. My Dr has therefore prescribed a drug which contains vit D to boost my intake of Calcium and phosphate...so hopefully that will also help me sleep better too!

[Cherindi]

So, here I am again...

I sometimes wish that I didn't have Coeliac Disease as I find it very restricting considering how much I love cooking. It would be so nice to be able to make a proper loaf of bread and not a cake mix that so often fails! As far as buying bread goes, Warburtons has turned out to be the best so far, but it is infuriating when you open a packet and the crust falls off as you take it out of the pack!!! Often there are holes through the loaves and they break up as you try to make a sandwich. The best thing I have found so far are Sainsburys 'baps'. They are soft and tasty and are bouncy like proper ones. Why can't the bread be made the same way!? Rant over...

Are there any cooks/chefs out there who manage to make bread that is edible and doesn't fall apart at the first opportunity? Any tips?

If I was well I would love to have been a chef but how do Coeliacs manage if they can't taste a lot of what they cook?

Slept better last night but that was mainly due to the fact that I was so tired from the night before I could barely keep my eyes open! I only woke briefly about five times!

Life Goes on...

After I left school I went on to study Hairdressing at Chichester College (which I hated, but I had no idea what I really wanted to do then so that was the best option at the time). I passed with the highest mark of the year (98%) and therefore a Distinction in Practical and Theory. I am glad I did it because it helped me later on (but I will go back to that). During my time at College came the crunch as far as my diet was concerned. As a teenager of 18 and feeling my feet socially, I rebelled against the diet. At home of course I ate what my mother prepared for me, but outside I ate more or less what I wanted. My mother couldn't understand why I was unwell and, of course, I lied when she asked if I had eaten anything with Gluten in it. I wanted to fit in and it was so difficult when I was out with friends. They wanted to go to the pub and drink but as I am not a spirits drinker it was hard to know what was G/F and what wasn't. Then they would want to go out for a snack...Pizza (where salad for me was the only option - how exciting!!! NOT!), or a Kebab, or a Burger etc...and if I said that this meant that I couldn't eat anything with them they sighed with frustration and carried on with what they wanted to eat, instead of thinking of something somewhere that I could eat the same as everyone else! But if we went bowling and wanted a snack afterwards then an Indian meal was out of the question when all they wanted was a MacDonalds!!! No wonder I gave in and ate what my friends did and of course I suffered the consequences afterwards! It is no easier nowadays because even fish and chip shops are not safe for a Coeliac as the chips are cooked in the same oil as the battered fish! It was and is so difficult for teenage Coeliacs to fit in when their friends don't understand! As an adult it is a lot easier as my friends are more understanding and will go out of their way to find somewhere suitable!!! I even had a problem when I went to our Youth Group's Tramp's Supper as one meal was a chicken curry and they dusted the chicken with flour before cooking it in the curry, but, they didn't tell me until the following day! One rang me up the next day as I was away from College due to being unwell, and asked if I was 0k! Then when I said no she apologised and told me what they had done, but they didn't tell me at the time because they thought that being only a dusting that it wouldn't matter!!! As I grew older things got better as my friends began to understand more how important it was that I stuck rigidly to my diet! However, mistakes get made even now, (thirty years later), and now that I am older, if I am not sure, I don't eat! Of course there are still the times that I go out, say to a party, and my diet has not been taken into consideration even when I have written on the RSVP my need for a G/F diet and a short explanation about it, so I get there to find that there is NOTHING for me to eat! I went to a wedding recently but even after explaining in full what I could and couldn't eat, I was only able to eat the dessert (an Eton Mess), because the food had been bought in from a catering company and each meal was covered in gravy! A fellow guest suggested that I scrape off the gravy and eat the food underneath...ignorance is so unhelpful!!!

Well, that is me for tonight..Back later...Hope you didn't get too bored and that some of this was interesting...TTFN

Cherindi

[Coeliac_Copper]

Hi Cherindi

Sorry to hear of the terrible troubles you had getting diagnosed, sounds like you had an absolutely awful experience. You touched on a good point about the social side of eating. It's something I really struggle with myself and always end up eating at home because it's just too risky to have someone else prepare your food, even when you tell them what you can and can't eat!

All the best with the other health issues

[Cherindi in reply to Coeliac_Copper]

It always amazes me that if someone says they are vegetarian, people fall over backwards to accommodate them but when you explain that being on a G/F diet is not a life choice but an important allergy they don't take you as seriously or take as much care. I remember watching Come Dine With Me when they had a Coeliac on there and they didn't bother to adhere to her diet, yet every time they have a veggie on there, they make so much effort to make sure they can eat properly and are fully included. Makes me so cross!!!