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.

No wonder you feel so down
Sorry you are going through all this
Bumping for you
xxx

Hmmm, I know Lou33 has epilepsy and other health problems, though I'm not sure what they are specifically (I think she has back problems).

Oh, you poor thing; no wonder things are getting you down

I can't empathise on the first two, but I was diagnosed coeliac just over three years ago. It was tough at first, but it does get easier.

You might find that once the coeliac is under control and your gut has had a chance to recover the IBS symptoms might not be so bad.

Have you joined Coeliac UK?

Im still trying to be diagnosed. I originally stopped eating wheat and gluten as i read a study by a gynaecologist who had Endometriosis that by coming off wheat and gluten it can reduce the pain. A month or so after someone asked me if i was a coeliac. Then i looked into this. My problem was that as i had been 'clean' when i did slip up and have some 'bad food' i was reacting really bad. On top of the reaction a coeliac would have The Endometriosis pains were terrible and they both reacted with my epilepsy causing me to nearly have episodes.
I went to my dr telling her i came off the 'bad food' for the Endometriosis but now think im a coeliac. She told me i had to go back on the 'bad food' for 6-8weeks then have a bloodtest and then have a biopsey.
I burst into tears - i have a 3yr old (well 2yrs old at the time) and im a single mum so theres no way i can go back on the 'bad food', not even for a day on my own. She sid thats the only way i can get diagnosed. I went away thinking well theres no way now i can get diagnosed. My mum and dad both work full time.
Then end of last year i had to see my dr about my perscription but ended up seeing a different lady and she said she would send me to see a specialist as she knew if i saw someone within a year of coming off the food things could still be done. Well i had the appointment last week and she was really shitty with me and said i had to go on the 'bad food' for a week then have a blood test........my mum was with em and after us both trying to tell the dr that i cannot because of my epilepsy she called a 'contact' of hers then sent me for a 'hla' blood test and said 'i'll be in touch'
I've heard there is a book you get from the Coeliac society that has all the food you can have from the top supermarkets and some other brad names - i cant get this as im not diagnosed.

I don't have eppilepsy but I have a condition that mimics the symptoms (hashimotos encephalitis.) I know how hard it is to look after the kids when you are having a bad day. I only have absence seizures, hallucinations, muscle jerking, visual disurbances not full blown fits (yet!) etc. But its tough. Lost my driving licence. I fully understand how rough it is esp waiting for a diagnosis. You can wait and wait and wait forever. The hospitals don;t seem to realise that a few weeks makes all the difference when you are in need of help.

Apparently the gut heals reasonably quickly and should be getting back to normal three to six months after you stop eating gluten. As far as I'm aware if you have been off gluten for a year, it is unlikely that there will be any immune response in your blood test and the biopsy could be pretty inconclusive. There are a couple of posters on here who are more knowledgeable about the workings of it all than me though so keep this bumped and hopefully they will see it. Sorry yoour appointment with the specialsit wasn't great, and hopefully something will show up from that blood test.

I have a friend with endometriosis and she is also wheat free and now practically symptomless.

there is a fair bit of information on the sebsite that non-members can access, and I've had a look in the shop. you can buy a copy of the Food and Drink directory for £10 here. It is updated every month and the updates are on Ceefax and on the website (although you might need to log in to access them)

oh, and if you can get your doctor to acknowledge that although not actually diagnosed coeliac but on a GF diet, you should still be able to join coeliac UK I'm pretty sure

the helplie also offers advice for people struggling to get a diagnosis

you might find your local branch helpful as well.

onefunkymama - The dr i saw who refered me to the dr i saw last week put me down for urgent appt required and even phoned the secetery a week later faxing my referal to her to get an appointment - my appointment was 6 months after the dr refered me!! Stupid eh.
How old are you kids if you dont mind me asking. Was just wondering if you taught them to do anything for when your ill and need to contact some one? My dd can use my mobile but i've not taught her to find a number and call that person. I get the number up then she presses call and hang up. Shes 3 now should i show her?
Thank you lackaDAISYcal i've just bought the directory i think im gonna try and call the helpline tomorrow, i'm terrible on the phone. I'll prob start crying, im quite low at the moment - trying to type with tears in my eyes for most of this.
Thanks for your adivise

brainache

I hope you're feeling a little bet better this morning

I know how frustrating it can be, although I was fortunate in that I got tested very quickly, but I had had chronic diahorrea for nearly four months until I got the biopsy results. It can be very wearing.

what it must be like with your other symptoms I can only imagine

Keep us posted to how you are getting on.

Hi Brainache

I know that waiting is such a nightmare. DD (4) knows how to call an ambulance and our address. Thankfully she has never needed to do this so far. My attacks are fairly infrequent, they tend to come in bunches every 3-4 months. The thing that scares me the most is that when I have attacks I tend to suddenly stop what I'm doing and abandon it not even realising I ever started. So things like using the grill/iron become very dangerous. As is crossing the road because I could very easily cross in front of a car simply because I'm having an attack. I've told the kids not to cross the road if they think its not safe even if I start to cross. I once had an absence while I took ds swimming (3) he nearly drowned even though i'd told the life guard that I might have a funny turn.

Its not an ideal situation but all we can do is our best. I guess you've come accross epilepsy action, they have a support line www.epilepsy.org.uk, 0808 800 5050
Stay in touch, sounds like we both need support!

brainache sorry you have been having such a bad time. There is a definite link between Epilepsy and coeliac disease. You will find several links about it here: coeliac.info/suppboard/search.php?mode=results

The good news is that some people with epilepsy find their seizures reduce on the glutenfree diet.

It would be worth asking here if anyone is both coeliac and epileptic: members2.boardhost.com/glutenfree/

You will also find a lot of help there on the coeliac side while you are learning to cope with being glutenfree without diagnosis - ask as many questions as you want (though they will encourage you to go for diagnosis so give the reason why you can't in your first post).

It is barbaric when it makes people ill but the current recommendation is 3 months back on a gluten load of at least six slices of bread a day (or equivalent in pasta) - otherwise the biopsy would probably be a false negative. However, a few doctors will "treat as coeliac" on the basis of symptoms, and a gene test to show if you are carrying the coeliac gene - if there is a good reason not to have a gluten challenge e.g. that it made your epilepsy worse.

Hope you can make contact with someone with a similar combination so you don't feel you are the only one.

Cheers guys
Na not feeling much better today woke up with pains in my tummy/womb/girly areas again. My mate took me out for lunch and 1/2 way into eating it i had more pains so had to leave the rest - again. The chef knows me so i know i its was all safe to eat (only had a basic salad)
It might sound strange but the diahorrea does not bother me to much as i've been like this since i was a baby - its only now that we know why. Mum said no drs would listern to her when she told them how as a kid i would get really bad tummy aches after eating most food, rolling on the floor crying she said. I've always had trouble with my weight and been a fussy eater just didnt know about wheat and gluten intolerance.
Re my epilepsy - Drs told my mum that i was attention seeking!! Told her this for years. Think they thought my mum was one of them mums that wanted their child to be ill.
I am kinda lucky with my epilepsy in that i get certain feelings before a fit comes, like a build up to it. That must be so scary for you though, not knowing when.

Yeah ive read about the link between them. It makes me feel more mad that the drs did not listen to my mum when i was a kid.
The gene test sounds like this blood test they have sent me for, the dr said it will tell them if im more susceptible to being a coeliac.
I said to my mum why cant they let me bring in a chinese and eat that infront of them so they can watch what happens......
onefunkymama just reread you post - would you not want someone with you most of the time when your out and about? I was realy ill with my epilepsy when i was pregnant and also the 1st few months of this year - i didnt go out unless i was with someone. A few times i did go out on my own but was so scared i just made sure i saw people all the time so i could go out.

Hi Brainache

So sorry to hear you are struggling at the moment.

I am hypothyroid and have endometriosis, both of which are autoimmune diseases, and it took me 5 years to get a diagnosis and I know how hard it can be to try and get someone to actually listen to you properly.

In the past I was referred to see an immunologist and they confirmed that there is a link between these various autoimmune diseases (also including eczema, asthma, ibs, etc) - there is a genetic link so it runs in families. I was told at teh time I could possibly have coeliac disease but did not have any tests for it as I was not typically symptomatic.

Since then I have reduced wheat in my diet, try not to eat bread, buy GF pasta, and use GF flour to make cakes and biscuits at home. I also try not to eat any ready prepared foods, eat plenty of fruit and veg, and cook as much as possible from scratch.

I have not experienced any symptoms of my endometriosis since I changed my eating habits.

I have a friend at work who also has endo and she does the same, and also says she feels much better when she is wheat and dairy free.

I am wondering really, how much difference a diagnosis makes?

Do you feel you need information or support in changing you eating habits?

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I really would love to be able to sit down and speak to someone who has Epilepsy Endometriosis and is a Coeliac.
I think maybe my epilepsy medication might not be agreeing with me on the coeliac side of things.
My food world seems sooo small at the moment - but saying that i have been able to buy the Food and Drink directory book that i didnt know i could get as im not diagnosed. Thanks to lackaDAISYcal .
I would love some support, someone to talk to who knows what im going through. I feel so alone as everyone seem to have 1 or 2 of the above.
I feel like im eating something i shouldn't be as im feeling ill in a coeliac way everyday. I was generally fine for a while when i 1st came off the food, but this year its all gone wrong. Im soooo careful when eating. I only drink water, sometimes coke/dr pepper, sometimes coffee cause i dont know what drinks i can have. I think about calling the labels helplines sometimes but get scared incase the person doesnt really know and gives me false information.
I had a chef in a fancy resturant telling me i coudl have their pasta dish when it was normal pasta! i had to say a fews time before he understood what i was asking 'does it contain wheat or gluten' etc.
Im sick of feeling ill all the time.
(bloody crying again)

In feb i had a operation to burn away the Endometriosis and my appointment to see the consultant is 4 months away, my epilepsy consultant appointment is 3 months away, the appointment to get diagnosed as coeliac was last week
There all over the place and not together. A yr ago was the last time i saw my epilepsy consultant and i didnt know about any link. For the past year i have been trying to see drs and been waiting for appointments to try and understand and be diagnosed as coeliac. The dr i saw last week was so rude, it was like i had called her back from her honeymoon or something, like it was a real inconvenience us being there and when i said i could not go back on the food it was like i had slapped her in the face. She would not even explain what a hla blod test was as she was 'far to busy'. not the fact i had waited months to see her and she was an hr behind.

Message withdrawn

Thanks Pitchounette , I've been for the bloodtest now and will just wait and see what happens. Im ill more or less every day now so dont really want to ask to be refered to someone else. I'll see what happens next with this dr, but thank you
I've had a good day today not felt ill or been to the loo or had any pains - but not eaten well at all today.
My friend said to keep a timed diary of everything i eat, every bowel movment, every ill feelings so i can see any links myself and also to show the drs.
Today i've had cereal, rice pudding, home-made pork chop soup with veg, bit of chocolate. And i've had no problems today. Even had a normal poo (which is rare) (sorry if tmi)

Message withdrawn

God i hope so Lets see what tomorow brings

Yiipppeeee The Coliac book has arrived Thanks lackaDAISYcal
Im off shopping tomorrow - there are so many things in the book that i was told i could not eat...........im confused but if it says i can in the book then it'll b rude not to try it all

I had a few good days but seem to be having a few bad days now By doing this diary i have figured out that taking my epilepsy medication on a empty/hungry tummy it made me feel sicky and i ended up going to the loo/for a poo/bowel movment.
Stupid question but while im writing this diary of everything i eat etc, how could i say in short that i've been to the loo? I dont even know if a dr would be looking at it. I say poo when i speak but it sounds silly on paper
eg - started to have pains then....
went for a poo, went to the loo, had bowel movment, no2, #2...