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Hi. My name's Wanda. I've been thinking about joining these forums for a short while. I decided to as I need to hear from ppl who will know or understand what I'm going through.

I'm 30 years old. My story starts about 6 or 7 weeks ago. To start though, I'd best explain. I'm epileptic and have been since the age of 15. Until just over a year ago I was having fits every month or two. They seem to have stopped. I was called in to my doctor's a month and a half ago for a routine blood test for my tegratol levels. A few days later I received a letter to go for a repeat blood test as my glucose was too high. They did a fasting blood sugar test and were supposed to do vitamin level tests, but that didn't happen.

After the tests, I went back to my doctor. I got told my blood sugar was fine, that my calcium levels were a bit low, which was unusual and I was slightly anaemic. I've been anaemic before, was on iron tablets for a short time then back to normal. I was sent for blood tests for my vitamin levels. They were all a little low. I'm always told they're a 'bit' low, regardless of how low lol. I'm now on iron tablets for the anaemia and after a further appointment with my doctor was told that she thinks I may have celiac disease and that I'd need to be sent to a gastroenterolgist to have a camera down my throat to check my small intestine. I've had that one before too, but only checking my stomach, which I got told was perfectly healthy.

Several years ago, I was diagnosed with IBS, which I don't believe I have and never have believed. It was a kind of 'go away, you're annoying us' diagnosis. I never pushed it further. I don't like going to the doctor at the best of times.

I have varying problems. Constant stomach ache, gas, bloating, constipation, infrequent diohrea (however it is spelt), insomnia, constant tiredness, depression, pains in my hands, arms and feet, headaches, itchy legs (most of the time, specially at night). Those are the things I can think of off of the top of my head anyway.

Just before my doctor told me she thinks it may be celiac, I came to the conclusion that it is something to do with eating. I used to have crisps (chips) as a snack at night, and my legs would go crazy, worse itching than normal. There's never anything to see on my legs, they just itch. I stopped eating crisps and my legs are now calmer, although not much, hence why I am up and typing here at 3.44am. My legs seem to be an indicator of me eating something I shouldn't. They itch like crazy. Just recently when I've eaten bread, cook-in sauces and wheat crackers, really shouldn't have but the crackers were there and I was hungry.

I live with my mum and daughter, who is 6. Due to the insomnia and subsequent strange sleeping hours, my daughter is mostly looked after by my mum. We all live in England. Because of a recent berevement in the family, I'm not really able to talk to my family about how I feel. They know anyway, but I feel like I'm going insane. I don't like going to the doctor. Because of my epilepsy meds, I got told a lot that there was nothing they could do because of the tablets I was already on, so I stopped telling them what was wrong most of the time and eventually stopped going at all.

I feel so scared, lost and very, very lonely. I'm used to not feeling 'well', but everything seems to be happening at once, and I have nobody to help me. What made me even worse, in these feelings was a recent appointment at the doctor's (yet another blood test) when, although she didn't say anything beyond she'd written to gastro and had I heard something, was how concerned she looked and seemed to almost be apologising for the fact that there was nothing she could do until I was seen by gastro.

I'm sorry for the length of this post. It kind of got away from me. I'm not usually long winded but it's not an easy story to tell in a short way. I just want to feel that I'm not alone and there are ppl out there who understand. Thank you for your time :)

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Hi. My name's Wanda. I've been thinking about joining these forums for a short while. I decided to as I need to hear from ppl who will know or understand what I'm going through.

I'm 30 years old. My story starts about 6 or 7 weeks ago. To start though, I'd best explain. I'm epileptic and have been since the age of 15. Until just over a year ago I was having fits every month or two. They seem to have stopped. I was called in to my doctor's a month and a half ago for a routine blood test for my tegratol levels. A few days later I received a letter to go for a repeat blood test as my glucose was too high. They did a fasting blood sugar test and were supposed to do vitamin level tests, but that didn't happen.

After the tests, I went back to my doctor. I got told my blood sugar was fine, that my calcium levels were a bit low, which was unusual and I was slightly anaemic. I've been anaemic before, was on iron tablets for a short time then back to normal. I was sent for blood tests for my vitamin levels. They were all a little low. I'm always told they're a 'bit' low, regardless of how low lol. I'm now on iron tablets for the anaemia and after a further appointment with my doctor was told that she thinks I may have celiac disease and that I'd need to be sent to a gastroenterolgist to have a camera down my throat to check my small intestine. I've had that one before too, but only checking my stomach, which I got told was perfectly healthy.

Several years ago, I was diagnosed with IBS, which I don't believe I have and never have believed. It was a kind of 'go away, you're annoying us' diagnosis. I never pushed it further. I don't like going to the doctor at the best of times.

I have varying problems. Constant stomach ache, gas, bloating, constipation, infrequent diohrea (however it is spelt), insomnia, constant tiredness, depression, pains in my hands, arms and feet, headaches, itchy legs (most of the time, specially at night). Those are the things I can think of off of the top of my head anyway.

Just before my doctor told me she thinks it may be celiac, I came to the conclusion that it is something to do with eating. I used to have crisps (chips) as a snack at night, and my legs would go crazy, worse itching than normal. There's never anything to see on my legs, they just itch. I stopped eating crisps and my legs are now calmer, although not much, hence why I am up and typing here at 3.44am. My legs seem to be an indicator of me eating something I shouldn't. They itch like crazy. Just recently when I've eaten bread, cook-in sauces and wheat crackers, really shouldn't have but the crackers were there and I was hungry.

I live with my mum and daughter, who is 6. Due to the insomnia and subsequent strange sleeping hours, my daughter is mostly looked after by my mum. We all live in England. Because of a recent berevement in the family, I'm not really able to talk to my family about how I feel. They know anyway, but I feel like I'm going insane. I don't like going to the doctor. Because of my epilepsy meds, I got told a lot that there was nothing they could do because of the tablets I was already on, so I stopped telling them what was wrong most of the time and eventually stopped going at all.

I feel so scared, lost and very, very lonely. I'm used to not feeling 'well', but everything seems to be happening at once, and I have nobody to help me. What made me even worse, in these feelings was a recent appointment at the doctor's (yet another blood test) when, although she didn't say anything beyond she'd written to gastro and had I heard something, was how concerned she looked and seemed to almost be apologising for the fact that there was nothing she could do until I was seen by gastro.

I'm sorry for the length of this post. It kind of got away from me. I'm not usually long winded but it's not an easy story to tell in a short way. I just want to feel that I'm not alone and there are ppl out there who understand. Thank you for your time :)

Wanda,

Welcome to the family :)

U r not alone, btw there r tons of us with the same symptoms that u have, my hubby had the itching legs and feet every night til he went gluten free ( only now if he gets accidently glutened)

So feel free to vent or ask as many ?'s as u want :)

that's wht we all do and r here for !

So whenever u feel lonely or flustrated put ur words on here and we will try to answer them the best we can and if we cant I'm sure a past poster can ;)

Good luck in ur findings of the culprit to making u itch and believe me u will feel so much better after u go and stay gluten-free :)

Belinda

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I can relate to alot of your story - I'm 32 and could not believe that my body was turning on me and no one really knew why. I felt like I was falling apart. Anyway, since going gluten-free, I have made slow but steady improvements and now I think that I just might feel "normal" again soon. Good luck to you.

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You're not alone. There are alot of folks that are struggling with illness, juggling a lot of seemingly unrelated distressing symptoms and looking for answers. You've come to a good place to get support.

I can understand how you feel about doctors, but I think finding a compassionate, knowledgeable gastro doc will go a long way towards helping you get to the source of your problems and take control of your life again. I strongly urge you to find someone who'll work with you. If you feel this first gastro - or your other doctor for that matter - isn't listening to you, isn't taking time to thoroughly explore your history and symptoms, isn't treating you in such a way to get results, you NEED to find one who will.

I'd also suggest you use your times of insomnia to explore the Internet and educate yourself on digestive diseases. See what descriptions sound like they match your situation. Learn about all types of therapies: traditional drugs and well as alternative therapies. Experiment with dietary changes. What you eat plays a HUGE part in your body's health or lack thereof. The book Optimal Digestion is a great resource I've found that covers the gamut on digestive health. You can find it on www.amazon .com. I'm a firm believer the active, informed patient gets results.

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I think you have found a good reason for a lot of your health issues. My sister has seizures (we do not usually say "fit" here in the U.S.) She also has rheumatoid arthritis & a bunch of other stuff but refuses to stay on the gluten free diet... she is 59.

I totally understand how you are feeling & you are not alone. but you are fortunate that the issue of celiac & epilepsy has been batted around for a couple of years now, with some completly med free on the gluten free diet, from your descriptions it sounds like you might be one of those & well the fact that you are in England (where most of our ancestors came from) where celiac is so prevalent if not totally recognized. My family are from England & Ireland, I am double DQ1. What a wonderful doctor that must be that saw the "celiac" symptoms in you. That was a very lucky break for you.

I suggest you google Celiac & Epiliepsy & see what you get. there is a lady that lives in Paris that has been completely med free & never has a problem anymore unless she gets glutened. I will look up some of those posts & PM them to you. I am not saying you can quit taking any meds but your doctor should work with you & the gluten-free diet when your test results are back. I would also say that if you get a negative result, just to keep on studying & go gluten-free anyway. Oh, & start taking a B12 everyday or get B12 shots if you can...

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Wow. So many replies. Thank you for that :). That helped. Now I don't feel like a melodramatic idiot lol.

I've done a lot of research on celiac and a couple of other digestive diseases. I can see why my doctor thinks it's celiac. I'm just waiting on an appointment from the hospital. I'll continue to look in to digestive diseases. It's interesting stuff and good knowledge to have. I never thought of looking at both celiac and epilepsy. I had a seizure yesterday though :(

I'll look in to it. Thanks for the pm, paperdoll. All help greatly appreciated :)

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Hi Wanda,

Nice to meet you. Im also new to this board. I wanted to reply and say hello.

Unlike most of the others posting here, I am not diagnosed and also not yet gluten free.

So I write as someone identifying with some of what you are experiencing right now, and how frustrating it can be, and isolating.

I have suffered many of the symptoms you have over past years and a few different ones - infrequent diarrhoea, insomnia, pains in hands, really itchy legs , feet and torso!! Some nights on an itchfrenzy I end up stood in the bath rubbing ice all over me in an attempt to cool off and reduce the burn caused by my itching. It can keep me up until 3 or 4am.

Over the years I was told I was stressed, even when at one point I slept every day after my main meal- this went on for 2 years or so. I then fell in love !:) and it improved for a little while which my docs took as proof it was stress related. However, now 7 yrs on at 33 I have a lot more problems, anaemia, hypothyroidism, arthritic pain in multiple joints, mood swings. Im also english, but living in Germany.

I dont know what the future will bring for me yet and it could be that it is not celiac (though somehow I doubt that it is not). Whether or not my tests give a positive result for celiac, I intend to try the diet anyhow. This inbetween stage however, all the waiting and being told "bits of things" by drs is so frustrating. I eat gluten so as not to negatively impact the results. But its tough to put something in my mouth that I know could be hurting me.

When I read your post I really understood how scary it feels sometimes. Sorry to hear that you recently had a bereavement too.

Hope that you hear from the gastro soon, fingers crossed,

good_trojan

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