Im Epileptic, have Endometriosis & i'm a Coeliac - IS ANYONE ELSE?????

[Brainache]

Im Epileptic, have Endometriosis & i'm a Coeliac.

Ive had Epilepsy since a baby, was diagnosed with Endometriosis about 6 yrs ago and this time last year i found out im a coeliac, oh and i have IBS....

I really really need to talk to someone about it all . Im feeling so depressed.

I cant seem to feel well at the moment. I try to talk to the drs but they dont know enough of each of the above to help me. When i spoke to my epilepsy nurse he wasnt that helpful and ive still got months till my epilepsy specialist appointment. Would love to speak to someone who has at least the 1st 3 of the above.
Im crying as i write this cause its really getting me down, no-one seems to understand.

Message withdrawn

Cheers
Please explain this to me........this is the 3rd time i've had lamb in erm 2months and the 3rd time ive noticed ive had bowel cramps and diarrhoea after eating it.......I've had lamb plenty of times in my life just not noticed a pattern untill now and can only remember the last 3 times.
Today i had lamb steak, the other two times it was chops. Just thought it was a coeliac thing - something was contaminated or something. Now i've changed my mind - Im sure its the lamb its self as this time i had it with rice and veg, where as all the other times ive had it with a roast. Also i cooked it for just me and dd. Roasts i cook on a sunday when my mum comes over, mum does little bits trying to help like turn this or stir that. I just kinda assumed she had by acciedent did something that 'contaminated' the food (dont mean it so harsh but cant think of a nicer, less harsh word)like used the wrong spoon or x might of splashed into y .......... Please dont say lamb is off the menu also

Looks like lamb is off the menu - a friend of mine has a family member that is coeliac and cant eat lamb

Hi BA, my ds had HLA test and found to be gluten-sensitive rather than celiac, but with neurological problems and they have gone away on gluten-free (a miracle if you ask me).
There are some clinics around the country where a gastro dr comes together with a neuro dr (eg Sheffield), which is perhaps preferable to doing it all separately.

I can recommend this forum; what those people don't know is not worth knowing and they certainly know more than most doctors. You will definitely find some who have been through your scenario just by reading the forum.

I found when my ds went of gluten, within a couple of months various other deficiencies surfaced and we have been working through them in turn (supplementing various nutrients etc).

Real shame that no one listened to your mum, some drs still don't realise how bad it can get if you ignore the early symptoms.
wishing you all the best

God all these forums scare me
I dont know where to post what to say. Here was easy - Health , done. I signed up to that forum nightcat but it keeps coming up woth errors when i try to post...
i'll try again tomorrow.
I think thats what i might need to do is see the 2 drs together
Thanks

You don't need to worry about signing up, you can just read it (that's how I started), best sections are Coping with and Related Disorders and Research.
There is a wealth of shared knowledge there.

Thanks nightcat I tried again this morning but still no luck. When dd's in bed tonight i'll come back on and have a read. Did not see Related Disorders, will look at that one for sure.
Do you know how i would find out about the clinics where a gastro dr comes together with a neuro dr? would my local gp know or would i have to ask 1 of my specialists? Sheffield is not really close to me, be easier if there was one closer

You could try ringing this neuro clinic to find out if the dr will accept you in her clinic; if anything like Sheffield, then they will be familiar with complications of celiac and you will probably be offered HLA test. Epilepsy is different to ataxia, but some types of epilepsy have celiac connection and after all, ketogenic diet that helps in some cases is not far off gluten-free (personally I think gluten-free is healthier).

Or you could ask on the forum, there are people from UK there and they will freely share their best drs and best treatments.

We basically go it alone now with ds, he improved so much that as long as he is like now, we don't need to be seen. We just keep in touch with our hero when needed.

Thanks nightcat
I had a HLA test in mid may when i saw that specialist. She said she'll be in touch.......... i'll have a proper read and look about on that site over the weekend with my mum

Then you are in good hands BA

more reads for you the gluten file

Yippppppiiiieeeeeeee

just received a letter from that Specialist i saw She got the results from the HLA test and its positive She said she is 'labeling me Coeliac' finally She is also sending me for a scan to check for thinning of the bones and to see a dietary (?) specialist yiiiippppppiiiiiieeeeeee HA to the few friends/family that think im just being silly HA

I'm have had endometriosis and am intolerant to gluten and dairy, I don't have epilepsy but suffer with severe allergic reactions if that helps .

I found all my symptoms tied in together I went to a very reputable chinese doctor who has helped no end. I don't suffer any where near like I did, I haven't had symptoms of endometriosis and allergies for a long time.

Excellent, bet your not in essex are you.....but if you are who is this chinese dr??
Do you get a achy numb feeling in ur tummy/bowl area when u need to poo kinda 'period tummy' feeling??

Brainache no I'm in the North but I can recommend a Chinese med college, you get access to some of the worlds best doctors who oversee the clinics and treat you, you pay less because you have a student in with you. It changed my life and I haven't looked back. I'll look for a college nearby hang on..

here I'd call these and ask for a local recommendation.