Biopsy, Diagnosis, Symptoms, Risks - Puzzles

[Guest BellyTimber]

Karen Brody had an alarming book published by the Sheldon Press in 1997 called Coping with Coeliac Disease in which she states that a major danger of returning to a gluten diet is serious nerve damage. Can members who have done this or a fitter relative, please testify about how true this forecast turned out to be for them?

How many members actually suffered major nerve damage prior to their diagnosis and/or original change of diet?

How much gluten must be included in one

[Ruth UK]

Hi, Gapspan,

I've just replied to one of your posts in one of the other 'topic areas'; can't remember which!

I am just beginning to find out how little the Drs here in UK seem to know about this disease. I've had chronic anaemia for many years (mentioned in other post) and NO-ONE ever checked me for celiac disease (although at one point I did have a form of 'absorption' test where you have to eat toast and butter and then blood tests are taken - came back -ve), until I was referred to the Haematology Clinic for the third time in 20 years. At least they got it this time!

The Haematologist this time wasn't sure if I should go gluten free before I have a biopsy! Decided I should leave it for a 'couple of weeks' and then go gluten-free if I hadn't heard anything! Obviously doesn't know that a biopsy is pretty pointless if you've been gluten-free for a while.

I'm going to try and find the book you've mentioned. I'm trying to find out all I can about this 'disease'.

(Just to add a thought I've just had - why on earth don't they make testing for celiac disease routine? It could actually save the NHS money because the 'side effects' of celiac disease wouldn't then happen - ie some cancers, a lot of osteoporosis, a lot of unnecessary testing for 'other causes' of symptoms such as 'gastro problems' and anaemia, etc etc. Plus there's also the cost to the nation as a whole of all the time taken off 'sick', when ONE blood test (plus a fairly simple procedure, if necessary) would prevent all this!)

I think I might already be turning into a 'campaigner'on this issue!

(PS Is there no chance of your seeing another doctor in your area who might be more sympathetic/pro-active? I know it can be really tough when drs don't follow through on what you need. I'm in the fortunate position of being able to choose who to see out of about 10 drs at a local 'health clinic' - the one I choose to see depends on what I'm going to see them for. So far I've only come away 'disappointed' a few times, rather than many times:)

[celiac3270]

(Just to add a thought I've just had - why on earth don't they make testing for celiac disease routine? It could actually save the NHS money because the 'side effects' of celiac disease wouldn't then happen - ie some cancers, a lot of osteoporosis, a lot of unnecessary testing for 'other causes' of symptoms such as 'gastro problems' and anaemia, etc etc. Plus there's also the cost to the nation as a whole of all the time taken off 'sick', when ONE blood test (plus a fairly simple procedure, if necessary) would prevent all this!)

I think I might already be turning into a 'campaigner'on this issue!

Yes--you're making very valid points --especially since it's so common--1 in 133 have it and 97% of celiacs aren't getting proper treatment (the gluten-free diet--in most cases because they don't know they have celiac disease to begin with). It would make so much sense for the governments of a lot of these countries to screen for it--the US, UK, and all the Northern European countries (Norway, Sweden, etc.). Your points about increased productivity, prevention of cancer and other complications are very good

[Guest BellyTimber]

Ruth,

i) ... not to mention all the nerves ...

ii) where I go we have six. The awkward one is one of the only two sane ones. Am about re-diagnose him.

Best of wishes

Michael

PS due to the crazy way I am posting as I read, I have found out since posting this, that it is exactly the same on another continent.

[Holgate]

The UK is so under prepared for celiac disease, doctors never seem to be able to tally symptoms together and even if they do they are retisent about doing blood tests because it costs the primary health care trust money!

Funnily enough I always thought the NHS was about health care!

Anyway in work last week I had to attend a training course on self halm and sucide prevention which a couple of the health care nurses attended. When I asked one of them if paitents with depression and dietary problems were screened for celiac disease, she said 'No it's not worth it, it costs money and they are only depressed because they got caught and put inside'

Even if screening for celiac disease only diagnosed ONE person and his diet was changed accordingly and it avoided the depression then it might well save a man's life. I was a touch annoyed to say the least

[darlindeb25]

i'm not sure how to answer this or if i am answering it in a way you want---i went undiagnosed for years, probably 20, at the very least--i think pregnancy twiggered my celiacs and my oldest child is now 30--i have been gluten-free now for almost 4 yrs----nerve damage???????? do you considered neuropathy as nerve damage--i was diagnosed with carpal tunnel about 6 yrs ago--i now believe it was neuropathy, not carpal tunnel--drs dont do through testing most of the time--they say, i think this is it and if you do this and this and take this, then you will be ok--i took anti-inflamatories and wore wrist braces for 2 weeks and then only at night for sometime--i also have raynauds disease--sometimes a combination of the two cause my hands to be so very cold and then ache--my fingers go numb when trying to handwrite things--cant hold them at certain angles without numbness, holding a phone for any amount of time does not happen for me--i have to tyope letters, cant hold a pen for very long--i get tingling in my feet---and its all because the celiacs was not found years ago--its the vitamin and mineral definciencies that caused all of this--i also had chemical embalances to deal with--panic attacks, agorophobia, anticipatory anxiety--all because a doctor didnt think to check for celiacs--it was unheard of then anyways---we do need to get this disease some major attention--so many illnesses could be eliminated if celiacs was found first---deb

[Guest BellyTimber]

Letter to GP near completion - he should write to another doctor who should write to my bosses - am feeling more confident - looking forward to lighter hearted times ahead.

I was struggling, about a fortnight ago, before I benefitted from the perspective of all the rest of you, because of the things I had learned but not had the opportunity to discuss.

Thanks so much & best wishes

Michael

[Katie O'Rourke]

Hi! Just wanted to let you know, that different doctors in different areas are defintiely better than others, and so is the care you recieve. I have just finished my degree at Lancaster University, which was really hard, as I got diagnosed after only being away from home for one year. Anyway, it was through pure coincidence of me mentioning to my GP that my dad is coeliac and has been for nearly 20 years, that she actually sent me for the blood test, along with a load of others inc liver and kidney function tests - I was only 19 at this time and very scared and totally on my own! Anyway the test was positive, so I was referred to the local hospital, where I saw the consultant and he said I would have to wait 9 months (!) for the endoscopy. Now bearing in mind I had pretty severe internal bleeding at this point from severe runs from being coeliac, and nearly being admitted to hospital for a blood transfusion for severe anaemia, this was a very long time to wait and stay on gluten if I was coeliac. So when I went home for the summer I saw my GP at home in Lincoln, who was able to get me an endoscopy in 2 weeks!!! Whats mroe is that the Dr - Dr Scott is also the one who diagnosed my dad years ago, so I knew he was experienced and knew about the disease very well. Anywya the biopsy confirmed I was coelaic, and I then had the bone density scan just to check. This was ok, but I found out from elderly coelaics in the lancaster area that they do not even do this bone density scan unless you are over 60 in that area!!!! Seems r=very silly to me, when it is done as a matter of course in Lincoln.

Just thought I should illustarte the point a bit more for you there, Dont be caught in Lancaster