Subscribe to FREE Celiac.com email alerts
charlotte-hall added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHelp Needed PleaseHi,
I've been diagnosed for 18 months..
Every 6 months or so when I go to see my consultant for routinely check ups I have a TTG level blood test done a few weeks before so we can discuss the result..
This time it's come back negative which I can't understand because I've been diagnosed with coeliac disease?
- 3 replies
- 524 views
charlotte-hall added a topic in Celiac Disease - Coping WithGiven UpI'm 16 and been diagnosed for 18 months. I'm still not even close to being back to 'normal'. I'm very strictly Gluten free and I also can't eat Gluten free oats, barley malt extract. I'm very super sensitive even products labelled as 'Gluten Free' still make me ill. I'm beginning to lose hope, my consultant said from blood tests etc I should be better as my TTG levels are back to a normal level, but nothing is improving. I still wake up every day knowing I'm going to feel ill and exhausted. I'm doing my GCSE's at the moment and I've been struggling through that, and it's totally degrading knowing that I'll most likely be feeling like this through college as well. It's starting to affect me mentally as well now and no one even understands. Most people just assume 'oh she can't eat Gluten, that's it'. Instead of realising how much it affects people when they can't do normal things from feeling so bad. And also I know I won't do the best of my ability in my exams, but throughout life I will be up against people who have had a normal life during their exams and I will never be the best I can. And the hospital aren't helping at all, I've been told there's nothing they can do and I just have to 'deal with it'. Well I can't anymore and I've completely given up.
- 8 replies
- 1,208 views
charlotte-hall added a topic in Celiac Disease - Coping WithCannot Cope Anymore, Physically Or Mentally.6 months of feeling ill, every single day. Nausea, tiredness, swollen throat, stomach pain, generally feeling rubbish. Missing loads of school and exams..
It's starting to effect me a lot now, I just feel like there's is no point in life anymore..just getting up to feel ill.
After 4 months gluten free still have a TTG level of 229 (normal is under 10)
No hope left anymore, starting to get depressed, and scared..I have massive emetophobia so feeling nauseous 24/7 is not a good thing at all!
Went to A&E, hospital said they couldnt do anything so got sent home..
Just really cannot cope.
- 10 replies
- 934 views
charlotte-hall added a topic in Celiac Disease - Teenagers & Young Adults OnlyHow To Make Boyfriend And Friends UnderstandHi everyone,
I'm 15, been diagnosed for 4 months, and still struggling a lot with my health, not feeling normal yet.
And my friends and boyfriend don't really understand, and don't take it seriously.
I'm super sensitive and I've been researching and have found that even if you kiss someone who's eaten gluten you can get contaminated. And I've spoken to my boyfriend about this and he's not willing to read books about celiacs or try and gluten free foods or anything..
And with friends and boyfriend like that it just makes everything a whole lot worse!
- 12 replies
- 5,175 views
charlotte-hall added a topic in Celiac Disease - Coping WithHelp PleaseI am 15, and got diagnosed late december 2011. I have been eating gluten free ever since diagnosis.
I hadn't gotten any better, so went for biopsy and blood tests. Results shown said I had TTG level of 289.. is this bad for 4 months gluten free? And also, I have not improved, still nausea, and light headed and dizzy and stomach pains. I'm really worried and scared, please can anyone tell me what to do? Also I'm apparently very senstive, and have had to cut out even gluten free labelled oats. I have heard that stuff labelled gluten free means its less than 20 parts per million, is even 20 still enough to make me ill?
- 4 replies
- 545 views
charlotte-hall added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Couple Of ThingsI was diagnosed in December 2011, with a 98% positive blood test. I got no better, so 2 weeks ago, I went for a biopsy. The results show, that I a, obviously very very sensitive to gluten. The consultant said I am the most sensitive he's ever seen. Apparently I had a score of 284 on the blood test, and normal is under 10. I'm not sure what that score is about? But surely thats not good! I am very disheartened as I have been on a gluten free diet for 4 months. But I suppose I need to concentrate more on cross contamination. I live in a house where there is still gluten.
I was just wondering on some tips that could help me get better? Including how to prevent cross contamination, and also what does that score signify on the blood test? And what does super sensitive mean, is it possible that a crumb could make me ill? And also what do I do if i do intake some gluten and how long will it take for me to recover? Although I feel ill constantly!
Many thanks! Hoping for some answers and to recover soon
- 3 replies
- 683 views