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I'm angry

D

dancer

Well-Known Member
Messages
1,390
Location
West Dunbartonshire
Type of diabetes
Type 1
Treatment type
Pump
I'm angry at my recent diagnosis of coeliac disease, but I know that this is part of the acceptance process.

I'm angry that after 37 years of diabetes I didn't know that there was the possibility that Type 1 diabetics could get coeliac disease. I didn't know this until after my consultant told me, at my annual review, that he was going to test me for this, and I googled it.

I'm angry that I didn't know that Type 1 diabetics could get osteoporosis. I only found this out when I was diagnosed with osteopenia and googled it.

I'm angry that even though I increased the amount of dancing I did each week and took Vitamin D supplements every day, my osteopenia progressed to osteoporosis.

I am angry, no, I'm FURIOUS, that I wasn't tested for coeliac disease when my osteopenia was diagnosed. If I had been, maybe I could have been osteoporosis free for many more years.

I am angry, no again I'm FURIOUS, that after being diagnosed with coeliac disease my gastroenterologist consultant didn't test my blood for Vitamin deficiency etc. I had to go to my GP this week to ask about this. She agreed that it should have been done, as nutrient deficiency is often found in newly diagnosed coeliacs, so I've to return to the health centre on Friday to have blood taken - this will be over a month after diagnosis! Again I have Google to thank for finding out about the nutrient deficiency possibility.

I am angry that my doctors haven't looked after me properly for several years!
 
Hey @dancer - sorry you feel this way, it's hard to deal with emotions when faced with a new obstacle, I can understand why you feel angry. I would certainly want answers and to know why I wasn't given any indication, I think sometimes we give doctors too much credit for being health experts but they may not of necessarily made the link. What I do know though is that feeling angry is a negative driver and won't help you physically, both with stress and also now with handling your coeliac status. Sadly you can't change what could of been but you can help your body to repair itself to adapt to new changes with your diet and in turn to feel more energised and much healthier. From what I know from coeliac friends, it can leave you lethargic and run down, so I hope your on your way to recovery. Try to be thankful that you know what your dealing with rather than angry at what could of been.
 
@Juicyj, it's funny you mention what could've been. My gastroenterologist consultant told me that if I found it too much coping with both Type 1 and coeliac disease, it was OK with him if I continued eating gluten. Admittedly he did go on to mention the "nasty" cancers that could appear in the gut if I do contiue eating gluten. I can't understand how he could possibly say it was OK with him. . . a wee bit unprofessional, I think!

My diabetes consultant also specialises in osteoporosis so he certainly should have made the possible link with coeliac disease, especially when he was looking at my bone density scan results at my diabetes appointment. He waited another 2 years before testing me for CD
 
Hi

Sorry you feel angry!!

However, be grateful for the internet.... And Dr Google.

I've had T1 for a long time too and have other medical problems. Its hard.. It is hard when you have to battle for treatment and care etc. Believe me I have total empathy with you.

However, now is the time to accept that you have to take control.... In so far as looking at foods and nutrition and to try as hard as you can to help yourself.

I am on a fairly restricted diet of soups and smoothies and no gluten. Just made from pure fruit and veg. I have experimented to try introducing other things but unsuccessfully...my stomach doesn't handle meat either.

It is going to be a shock and anger is natural as well from your description of events. I would say though that my gastro chap says I'm the best for trying to look after myself... And it has gained me a better relationship with him/dietitians etc...I analyse everything... Just to try and maintain the good control and quality of my diabetes/stomach probs, stop cancer returning but to keep my control over my life...

I had to make a complaint with a hospital due to dire care last year. In someways it let me vent my anger as I didn't want any other T1 to get such care there. However, I would say that it hindered my recovery in so much as my anger was overwhelming and I should have concentrated on me more. Its been a relief to get their apologies and improvements and my anger has gone. It is possible to complain about care but I would consider this carefully... There are ways to do it with GPs or hospitals but looking after yourself and reviewing your own nutrition etc is very important for you to gain some control back in your life..
 
Hi. I'm afraid many of us have come across GPs who don't connect things up and don't test for the right things at the right time. 10 minute appointments are a big problem and most of us no longer have a GP who knows us well. Shortly before my diagnosis I went to the GP with candida (I'm male). He just gave me some ointment. It didn't occur to him to test my blood sugar or be aware that candida is one of the more common presenting symptoms of diabetes thru sugar in the urine. I now use the Internet extensively for any condition and believe I'm astute enough to sort the wheat from the chaff.
 
Thanks @donnellysdogs, don't get me wrong, I have every intention of keeping to a gluten free diet. It's fine at home, when I know exactly what I'm eating, but eating out is a minefield - but I do know I'll get used to it in the long run.

I suppose I just wanted to get it all off my chest. I've just been left to get on with things. My blood sugars have been all over the place. I expected to have to increase my carb ratios but not my basals . . . and now I'm having to lower my ratios again. My DSN retired and she was the one in charge of insulin pumps. Another DSN said to contact her if I had any problems, but pointed out that I know a lot more about the pump than she does.

I've been quite weepy this week but am determined to get to grips with everything and get back to normal. I know there are lots of folk out there who are a lot worse off than me. I'm feeling sorry for myself but will get over it. I have no intention of making a formal complaint but I will have a chat with my diabetes consultant when I see him again in October.
 
Daibell said:
Hi. I'm afraid many of us have come across GPs who don't connect things up and don't test for the right things at the right time. 10 minute appointments are a big problem and most of us no longer have a GP who knows us well. Shortly before my diagnosis I went to the GP with candida (I'm male). He just gave me some ointment. It didn't occur to him to test my blood sugar or be aware that candida is one of the more common presenting symptoms of diabetes thru sugar in the urine. I now use the Internet extensively for any condition and believe I'm astute enough to sort the wheat from the chaff.
Click to expand...
Oh, don't mention WHEAT!!!
 
I heard that coeliac disease is triggered the same way diabetes is, and can't knowingly be prevented by lifestyle as I think top healthy people still get it. May be just a stray gene that could have been passed on from your ancestors who might have had it but didn't pass it on to their great great grandchildren but might still present itself again a few generations after.
 
nmr1991 said:
I heard that coeliac disease is triggered the same way diabetes is, and can't knowingly be prevented by lifestyle as I think top healthy people still get it. May be just a stray gene that could have been passed on from your ancestors who might have had it but didn't pass it on to their great great grandchildren but might still present itself again a few generations after.
Click to expand...
Apparently Type 1 diabetes and coeliac disease are connected to the same gene.
 
It is going to be a range of emotions to start with, just try and channel that anger into a positive way, so go and get some exercise, once you get through this stage it will be much easier managing your status.

I suspected I was coeliac a few years ago so went for blood tests which proved inconsistent, however as I was stressed at the time and levemir wasn't working for me I just made changes to my diet to exclude gluten, so if I cook now I do it with doves flour, we have a once a week treat with pancakes, they are gluten free and taste better than heavy gluten ones, I don't buy bread, biscuits or anything else, family gets a pizza every once in a while, eating out is easy as every food outlet has to declare what's got gluten and what hasn't, also hunt around as food manufacturers who make the gluten free breads etc send out free food packs when you are first diagnosed, I think you will find details of them on the coeliac website. It isn't hard to avoid it anymore, every supermarket has a range and food choices are very good too.
 
Hi, sorry to hear you are feeling so frustrated and angry, It's another auto-immune condition. I was diagnosed with Coeliac after being very ill, because of that a bone scan was recommended, 3 months later, I have osteoporosis. I was more annoyed with the osteoporosis diagnosis, because being a person who doesn't drive and is out and about, in the sunshine too and could move and lift furniture, I said they must be wrong !! but no, I have it in spine,hips and arms.
I, like you, didn't know about the high % of getting coeliac.

Good luck, at the time I was diagnosed with coeliac, I was happy that I found out what it was and it wasn't the C word, I felt so much better too. I have my yearly coeliac hospital appointment tomorrow.
All the best RRB
 
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