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Hala last won the day on December 6 2012

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About Hala

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  1. I have severe pancreatic insufficiency. I've had several stool tests done and they've all come back showing "completely undetectable levels of digestive enzymes". So by the sounds of it my pancreas has basically retired (although I don't seem to have an insulin problem). I'm prescribed Creon to take with everything I eat, which has lipase, protease and amylase. The GI doctors I've seen have all said that my EPI is down to my Crohn's disease, and is nothing to do with my Coeliac Disease...but by the looks of things it could be caused by either :S
  2. It's the first in the list of symptoms listed by Coeliac UK: http://www.coeliac.org.uk/coeliac-disease/what-is-coeliac-disease I think you should definitely push for blood test and biopsy. But remember, you have to be eating gluten for the tests to be accurate!
  3. Does hypoglycaemia cause night sweats? Most nights I wake up at least once drenched in a cold sweat. I don't think I'm getting too hot because I don't feel hot and I very rarely get too hot (wore jumpers in Africa during the summer). Anyway, it's pretty annoying and gross
  4. Thank you. I looked up hypoglycemia but a lot of the symptoms seem really severe, I've only been experiencing a few of the milder ones. The monitors look pretty expensive but I'll shop around and see if I can get one cheap. Hi Marcus . Unfortunately my body is really awful at digesting fats. I have pancreatic enzymes to take with food but the drinks are specifically fat-free so that I absorb more of them. I hope they're not damaging my pancreas, it's already crap enough . I haven't had the drinks much at all lately, I told the dietitian this and she seemed okay with this. I don't think I'd be able to get hold of most of the test results because they were done in hospital, rather than at my GP surgery, so they'll be lost in some folder somewhere (that's what seems to happen to all my notes!). I feel like I've bothered the doctors so much and had so many tests done I'm worried I'm annoying them or that they will stop taking me seriously . It doesn't help being aspergic either, because I just can't explain myself properly! Oh dear! I'm glad you found out your allergy so you could start feeling better . Doctors don't offer ELISA tests where I am, did you order yours online? Do the products specifically state cane sugar or is it just listed as glucose? Thanks for the info
  5. Okay, thanks for the info, I didn't realise you could be hypoglycaemic without diabetes. I tried to book a blood test but my surgery's fully-booked for now so I ordered a home glucose urinalysis test to do first. Probably not accurate but I thought I'd check before trying to book an appointment again. Hi, sorry I should have made myself clearer. These are medically-prescribed nutritional supplements tailored for disease-induced malnutrition/maldigestion. They can't be bought commercially. By high-energy I meant calorie, they do not have any caffeine and are not fizzy. They contain electrolytes, minerals etc but. to be honest, they seem like dressed-up sugar to me, ha. I've talked with my dietitian over how crap I've been feeling and how the supplements seem to make things worse but she didn't really comment and I ended up apologising for complaining at her (which I always seem to end up doing!).
  6. And there's absolutely no history of diabetes on either side of my family.
  7. Thanks for the advice everyone. I've never been tested for diabetes but I've had a lot of blood tests recently so surely they would have picked up diabetes or hypo/hyperglycaemia? Then again, I am ALWAYS thirsty even though I'm definitely not dehydrated because I pee all the time and it's always clear in colour. The doctors here are rubbish and it's IMPOSSIBLE to get appointments though :/.
  8. I'm prescribed high-energy supplement drinks (I have complex malabsorption issues and pancreatic failure) which are really sugary. Anywho, after I have these drinks I quite often feel dizzy/sick and get mild heart palpitations/tachycardia. Even when I sip them really slowly.This happens with sugary food as well. They're definitely gluten-free so it's not a coeliac reaction. Is it common for sugar to have this effect on the body? :/
  9. It'd be interesting to find out what causes the variation! Maybe it depends on the strength of our immune system at the moment of ingestion? Or the region of the intestines targetted? Yep I would never experiment for 'yucks' . The destruction celiac disease reaped on my body led to me being hospitalised for several weeks on end this year. I'm still recovering from the awful damage and malabsoprtion, no way would I ever purposely make it worse!!! I want to feel better
  10. Hiya . Back when I was eating gluten I didn't have particularly consistent symptoms either, although if I ate a gluten-heavy meal I definitely suffered heavily afterwards! But sometimes I wouldn't feel much of a reaction at all, or would feel crap after a non-gluten meal. Maybe some of the symptoms have time-lags? Or perhaps whilst the antibodies are always present, the symptoms come in waves? Tbh I felt so awful so much of the time I'm not sure the symptoms ever truly subsided! Good luck with the testing, I hope you can say goodbye to gluten soon Thanks for the info . I've actually already been diagnosed (very positive blood tests and completely destroyed intestines...the gastroenterologist said they were the worst he'd seen :/) and have been gluten-free for 6 months now, so I don't need to worry about testing or whatnot (which is free in the UK anyway, lucky us!). I was just curious about the science behind the disease.
  11. I just have a few questions re the mechanisms of coeliac disease. I'm a zoology student with coeliac disease (and associated conditions....gluten really reaked havoc on my body!) so am interested in the science, but I've always struggled with comprehending the biology of the immune system. Maybe it's because mine's so rubbish, ha Do we ALWAYS react to ingested gluten? Or does it sometimes 'slip through the net'? Obviously most of the time the body does react to glutenings (and boy do we suffer!), but could there be occassional times where the immune system doesn't respond? ie., are antibodies produced immediately upon every exposure to gluten? And does some level of damage always ensue? Don't worry, I'm not considering 'cheating' on the diet, I'm just interested in the mechanisms.
  12. .Would it be worth getting my thyroid tested?
  13. Have also been experiencing a twitching thumb and numb fingertips....any ideas? I do have a history of carpel tunnel syndrome but it doesn't usually affect me this way....
  14. Thanks guys . I have talked to the dietitians about possible other intolerances, including lactose, soy, egg etc. but they tell me they're reluctant to have me cut out any foods (I'm a vegetarian) until I'm a higher weight, and I can see their point. I really don't like the supplement drinks at all :/. The liquid feed I get through the tube is really good though, it's specifically tailored to my malabsorption problems and packed full of nutrients etc. .....just wish I didn't have to be on it, ha.
  15. What a lovely topic title, sorry about that! Over the past year I have lost a lot of weight and am experiencing many 'IBS-like' symptoms. This includes stomach aches, varying food transit times (often very fast), undigested food in stools, blood/blood clots and mucus in stools. I was diagnosed with coeliac disease (very positive blood test and endoscopy) in November. Because my weight-loss was so severe, and because I am still not absorbing the food I eat properly, I now have a PEG feeding tube for overnight liquid feeds and am on supplement drinks, alongside a normal (gluten-free) diet. I have had many tests done, including blood tests, MRI scans, endoscopies and a flexible sigmoidoscopy. My coelaic bloods are now negative (so I am following the gluten-free diet well). In hospital I was diagnosed with pancreatic insufficiency and have been taking creon enzymes with food. The flexible sigmoidoscopy showed some internal hemorrhoids which the doctors assume to be the cause of bloody stools. The doctors tell me I have 'complex malabsorption problems' along with/because of coeliac disease-induced damage and my pancreas not producing digestive enzymes. However, even with the enzymes and supplements, I am still experiencing large amounts of mucus and blood clots in my stools and any weight gain is painfully slow. I also feel like my stomach is always upset, despite avoiding gluten stringently. Is this to be expected, considering the diagnoses I have been given, or should I push for further investigation? I'm so frustrated and just want to feel better! Thanks