Posted , 4 users are following.
hi people who post on here. i have just opened a letter this aftermoon that says i have coeliac disease, it's a shock to say the least. now what do i do? i don't know what i can eat tonight, have lots of food with gluten in the freezer and my head is spinning. i have cried so much. can i even post on here anymore or do i need to go away? i'm sorry just need support! thanks.
0 likes, 44 replies
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turkey sam18386
Posted
please don'tpanic there are so many gluten free foods our there. if you can have potatoes some veg chicken anything plain until you can get to the shops. fruit and veg is gluten free, rice. corn . I have ibs and have cut out so many foods, even gluten and wheat not helped, I would have been happy to be diagnosed with celiac as I could have managed fine, I have a friend who is celiac and her life has changed for the better. Hope you get on ok. look on line for foods that contain gluten and wheat
good luck
turkey sam18386
Posted
please don'tpanic there are so many gluten free foods our there. if you can have potatoes some veg chicken anything plain until you can get to the shops. fruit and veg is gluten free, rice. corn . I have ibs and have cut out so many foods, even gluten and wheat not helped, I would have been happy to be diagnosed with celiac as I could have managed fine, I have a friend who is celiac and her life has changed for the better. Hope you get on ok. look on line for foods that contain gluten and wheat
good luck
pippa58442 sam18386
Posted
You can get gluten free products in the supermarket. If you have a local Co op or Tesco Express, these shops have late closing hours and may well stock gluten free foods too, so you could buy replacement items at a later hour. It doesn't matter about gluten foods in your freezer. They should stay fresh for a while if you have recently bought them and your husband may want to eat them so they don't have to go to waste. Just check on the packets to see how long you can freeze them for.
sam18386
Posted
i can not get over the kindness of strangers! thank you so much for being so kind. i just hope i can still write on here even though i have not got ibs. do you think i would be allowed to do that? i have made good friends on here.
jeremy04366 sam18386
Posted
i have celiac...i promise it isnt as scary as you think. There are so many foods and substitutes now that our diet isnt as strict as it was for those before us. The hardest part isnt avoiding gluten for me, it was identifying other triggerfoods as well. Some of us have intolerance to dairy and soy as well. Those however are not usually long term, it just depends on if theres any damage to the villi in the small intestine. I stay away from dairy but soy is fine or at least i have no reaction. I wasvery strict on not eating out for the first few months to give myself time to heal. Now, i can go out to certain restaurants and know exactly what o can or cant order. Lots of places have gluten free menu items now. If i can help in anyway, youre always welcomed to message me. Take good care of yourself. Youre going to be ok.:-)
Oh...i was also diagnosed with ibs first...my celiac is under control but still have ibs symptoms. A small percentage of us can still have both according to my mayo gastrologist.
turkey jeremy04366
Posted
Hi Jeremy
interesting post. I also have ibs and have cut out too many foods. I am not celiac but avoid gluten and wheat as advised by dietician . can't tolerate dairy and test also showed a few things including soya, that was a few yearsago. you seem to think dairy and soya is only temporary to be avoided, did a test say for you soya was a problem but not now. I want to try again for calcium and b12, but not dairy, any test I have had always comes up cows milk. my diet is poor as never have a settled stomach to try new food, any suggestions. sorry to go on a bit.
thanks
sam18386 jeremy04366
Posted
any advice is useful! this is more than a dietitian's advice which was next to none. my problem is not been coeliac disease but being vegetarian with a bean and pulse allergy. i feel really confused at the moment because even though the foods are easy enough to find i took 3 and a half hours to shop in 3 different places. luckily i have had a lactose test that came back negative ( at the hospital) which is fortunate. my upset now is with my last doctors where i asked in 2010 'are you sure this is ibs?' my doctor said 'yes' and left it. i am disgusted because my 1st set of tests came back inconclusive, wouldn't you think the doctor would send me for more tests to get a conclusion? 12 years of my life lost. no family, infertility, accusations of narcissicism because i was desperate to have a child. i feel broken, absolutely broken. any support off here beats none off the professionals. how do get back those 12 years? i feel just shxx!
jeremy04366 turkey
Posted
dairy and soy is usually only temporary for Celiac's until their villi in the small intestine heal and they can break down those substances properly and the intestinal wall is once again strong. Trying a new diet is very hard but i would suggest starting small and keeping a diary. Eliminate a few at a time and include them back later...if no reactions, scratch those off you list or potential trigger foods and move on to another food and eliminate it. Id do that over and over ..youll eventually find any trigger foods
jeremy04366 sam18386
Posted
sam...im so sorry that happen to you. I lost family as well as my doctors kept telling me nothing was wrong. It tore my life apart...no one would listen to me but finally a doctor asked about testing for celiac...and boom, there it was. However, my family never apologized but i will continue going forward with a positive mindset. I know it's hard but this isnt our faults.
grocery shopping is difficult but my stores here have everything in the aisles color coded and marked if its gluten free. It takes me about 30 minutes to shop , so im fortunate. Again, im always willing to help anyone any way i can...ive been through the ringer so to speak...i can completely relate
sam18386 jeremy04366
Posted
do you know i have always asked advice off the real experts on here because doctors etc can say what they like, they have medical not life training. it took me 3/4 hours to shop the 1st time but i am sure it will get easier! on top of this my older sister understood and then found me some more gluten free things in a different shop, which was really kind of her. the problem is my younger sister who said i couldn't have biscuits and cakes and my mum who said i was nothing but trouble to the family when they tried and endoscope under local last year, where someone needed to be there, because if needed sedation someone had to take me home!
turkey sam18386
Posted
There are so many gluten free foods out there, cakes biscuits chocolate, cereal pasta, also you could buy gluten free flour and make your own cakes and biscuits even bread. people your close to should be supporting you, don't know if you are old enough for alcohol but there are gluten free spirits also. Hope you get on ok
sam18386 turkey
Posted
thank you so much! my older sister will get through to my mother, as far as i'm concerned people will have to lump it, it's a firm diagnosis so there! i liked your last comment, it made me smile, i can drink but hardly ever do and haven't for the lsst few years. my 'alcohol' is blackcurrant and lemonade.
turkey sam18386
Posted
glad I made you smile, I don't drink as with ibs not found a drink I can tolerate, all I have is water and peppermint tea. very boring. I hope one day to sort my diet out, been trying for years. Enjoy your gkuten free journey. I may already have said my friend is coleiac and her life has changed for the better. never has stomach issues now.
sam18386
Posted
hi kind people who have spoken on here. if you are too coeliac how long did it take for you to recover properly?
jeremy04366 sam18386
Posted
Im glad your sister is supporting you...its such a physical and emotional drain having loved ones doubt you or not support you.
It took me about 2 years after severe symptoms showed up to find out i had celiac. However, ive known for quite some time that something wasnt right. Unfortunately, celiac is about the last thing they check for. Doctors cant make money off of it because theres no medical treatment, just a diet. Thats my theory anyways. Take care Sam
pippa58442 jeremy04366
Posted
I had to ask my doctor for a celiac test and when I did, he expressed surprised that it hadn't already been done to investigate my abdominal pain! At least though, it was negative and it was only IBS I had.
sam18386 pippa58442
Posted
i have come to the conclusion that my last doctors surgery were rubbish! at least i know what this
i just felt so bad getting ill so regularly. it was getting beyond a joke.my sister has helpec me out by buying me lots of gluten.free things, which my husband hates so more for me.
pippa58442 sam18386
Posted
Once you have been gluten free for a while, this will help. At least you have support from your sister.
jeremy04366 sam18386
Posted
i think my doctor got upset with me because he was wrong so many times. I had to argue a lot with him before i tested positive for celiac. He always told me it was just anxiety and in my head before this just because my bloodwork for auto immune was always normal. I think rubbish is an appropriate description in.my case as well.
sam18386 jeremy04366
Posted
hi jeremy, i can beat your story i think but it's not me being dishonest or boasting. i went to my doctors, well old doctors in 2005/6 complaining of problems with my bowel. i was originally sent for a COLONOSCOPY, which came back as INCONCLUSIVE in 2007. in 2010 after feeling particularly grim i asked my doctor if she was sure if this was ONLY ibs? when she said yes, it was then left. in 2015 i moved and because of problems i had getting into my doctors i swapped practice. the last 2 years have seen me persistently in and out of my current doctors. eventually on april 23rd this year, i had an ENDOSCOPY. i tried to have one last year under sedation but it was too hard. this turned up COELIAC. i have had 12 years with a unclear diagnosis to this. i have tried everything. fodmaps, basic diet ,bread in bread out but there was no MENTION of coeliac in ALL that time. even the doctor who sent me fpr the camera last year insisted on NO other tests. it's what i've lost and how much that hurts the most. i have had ptsd counselling for this, nearly lost my marriags and almost took my life over this last year. mg question is WHO is going to take the blame for this. i am NOT!!!! i am happy for the diagnosis, disgusted with the rest. i have done nothing but blame myself!
jeremy04366 sam18386
Posted
you are not to blame, none of us patients are, its auto immune.Theres a website online dedicated to celiac horror stories. Google celiac horror stories and it will pop up. We are not alone. I had neuropathy, ataxia, subcutaneous fat loss, memory failure and cognitive decline all because of it...but im so much better now. Can you believe my doctor's nurse told me tjis "celiac does not affect your small intestine, it affects your colon"...i said...oh no, thats incorrect , are you serious? I told her it does nothing to your colon , it damages the villi in your small intestine. She called my doctor in the office to prove me wrong, he said he wasnt sure so i googled it and gave them my phone. The doctor wrote what he saw in his notes and the nurse stormed off. Thats how misunderstood celiac is and why its often over looked and never tested. I hope you feel better
sam18386 jeremy04366
Posted
i agree, this is not my fault but when you directly ask 'are you sure this is just ibs?' you expect a doctor to check it, but my doctor didn't hence the complaint.
sam18386 jeremy04366
Posted
sorry i should have thanked you and asked if you're ok. i am waiting to see my doctor now let:s see what she says.....
jeremy04366 sam18386
Posted
no problem at all, let us know how your visit goes. Take care
sam18386 jeremy04366
Posted
finally a doctor that listens! i feel like i'm getting somewhere! she was really supportive, she awaiting my dietitian's appointment in 2 weeks then she'll sort diet, prescriptions etc. she even booked in a b12 blood test, because i explained that i was so tired, she seems REALLY helpful
i might get some sense now, after 12 long years.
pippa58442 sam18386
Posted
That's good news!
sam18386 pippa58442
Posted
phew!
jeremy04366 sam18386
Posted
thats great...sam! i had low vitamin d but my b12 seemed to always be fine. Good luck!
sam18386 jeremy04366
Posted
my doctor said i don't need either but i am going to argue the toss because i am persistently tired and i am sure there's a reason why.
pippa58442 sam18386
Posted
Celiac can make you tired.
sam18386 pippa58442
Posted
huh? is that true? if so my last doctors need sueing.
jeremy04366 sam18386
Posted
its very true, celiac can.make you very tired and exhausted
jeremy04366 sam18386
Posted
i dont blame you....some doctors will say your levels are normal when in fact they may be liw normal or borderline. Its like they have no interest in being proactive or preventive , just reactive.
pippa58442 sam18386
Posted
I also read that some people with celiac experience sinus infections too.
jeremy04366 pippa58442
Posted
ive had reoccurring chronic sinusitis alot. I still have sinus problems to this day. That makes sense ...at least for me
sam18386 jeremy04366
Posted
snap jeremy, i have viral laryngitis that has made me really dizzy! oh and i have coeliac.
pippa58442 jeremy04366
Posted
These sort of recurrent infections are quite common with celiac.
sam18386 pippa58442
Posted
i agree with you but i now have the hospital involved as i am sick of them!
pippa58442 sam18386
Posted
It can be very draining and stressful!
sam18386 pippa58442
Posted
zzzzz night, sorry little joke!
jeremy04366 sam18386
Posted
Uggh.!!!my hospital is awful...all 3 that are local are horrible.I go out of my way and go an extra 20 miles if i can...just to go to a decent hospital around us. Nowadays, it takes an act of Congress for them to take you seriously around here it seems . The laryngitis thing is no fun...hope you feel better
sam18386 jeremy04366
Posted
i hsve started complaint procedures against all the people involved in my care as i' feel it's gone beyond a joke now. let's see what they say to that? as for the throat, i ended up with medicine to stop the spinning sensation and it worked!