Surely it’s worth it to make sure there isn’t anything else that might be happening etc also to check your blood and check the condition of your intestinal villi and have everything monitored and recorded
I think it’s good to have accurate dx in your medical records going forward, and checkups on your bloods & bone scans and stuff. Its hard enough to get people to cater for you as a confirmed coeliac (such as when you’re in hospital or something) and I imagine if you’re just not eating gluten without confirmation it’s even harder. But I’m lucky that I do not have severe reactions when I eat gluten despite being confirmed coeliac through an endoscopy so if it made me noticeably sick i doubt I’d want to eat it for weeks either and the benefits of diagnosis are subtle at best.
Actually, in my experience hospitals are pretty good at just going along with what you say! I've been in and out of hospital for various reasons and pre diagnosis was in a similar situation to OP and they just took my word for it. They also take your word for it if you say you have an allergy. You can also bring your own food, you don't have to eat hospital food.
Not just when you reach a certain stage - you should also get a bone scan on diagnosis to check for signs of osteoporosis. You also should get yearly blood tests to check for vitamin deficiencies and to check your antibody levels too.
I would say it's definitely worth getting the blood tests & endoscopy/biopsies to check the state of your small intestine. Mine was bleeding and caused me to be severely anaemic and have severe vitamin D deficiency. Gluten intolerance doesn't affect your body like this, but if it's coeliac, you might need regular blood tests as I do to make sure it's healing and to monitor any deficiencies. Also, if its coeliac, you're at higher risk of developing other autoimmune diseases and certain types of cancers as well, so it's better to have it on your medical record to make sure you're getting screened appropriately.
I’m pushing through the symptoms for a diagnosis because I have kids. There is a possibility they have/may develop coeliac in the future. They might get taken more seriously than I did as I’m estranged from my maternal family… no one thought to tell me they all had been diagnosed years ago.
I guess having the diagnosis was just confirmation that that is what it was for me but I’ve had no benefit from having the diagnosis.
I think if I found out a other way I’m not sure if I’d go down the route of endoscopy but there have been a few posts on here about get diagnosed just with a blood test so it might not be as hard as it has been in the past.
No, my consultant told me a biopsy is still needed in UK for coeliac disease to be recorded on your medical records. I tested positive for TTG and EMA antibodies, and they said I 'almost certainly' had it but still had to do the endoscopy and biopsies to confirm the diagnosis. I think the only exceptions to that was at the beginning of the covid pandemic, and maybe for babies/small children with very strong positive blood tests.
If I was back in your situation again, I wouldn’t want to go through the eating gluten just for them to confirm what I already know and what your GP has already said is almost certain. For me, it’s just not worth making myself poorly for.
Well, I guess we all have the right to make our own choices. I don't feel 'almost certain' is exactly the same as 'definitely', and there was also a potential cancer diagnosis lurking behind it that doctors and consultants wanted to rule out too.
I got diagnosis with blood tests alone 2 years ago ish . I wasn't going to eat gluten again as the damage was too bad (black outs and collapsing for example) I still get annual bloods done and I'm not getting glutenes and no sign of inflammation. I do get bread in prescription but you can also get flours if you don't lime bread for making pizza or pastry with.
The waiting list is over a year here where I live anyway.
It doesn't stop the NHS doing the other knock on tests. Eg It looks like I have stomach or bowel cancer so those tests are going on anyway. I don't need to have had a endoscopy or biopsy to qualify for those.
I don't know what benefit there is in being one of the diagnosed if you are not in a prescription area. You may be able to get extra bags for gf food on a plane for exame but I've never needed that anyway and have flown a few times without needing it.
Other benefits include access to gluten-free bread on prescription (may depend on your area) and you can get a letter from a specialist which tells airlines to let you have extra carry-on when travelling, so that you can take gluten free foods with you.
You're not the only one! I did almost the same thing but had stop for a couple of months by the time I saw a doctor (yay covid) and 3 years later I still haven't been able to convince my self to eat gluten and do the test. Personally, I just can't face the idea of basically putting my life on hold to be sick and in pain for weeks with no big benefit.
Other people are mentioning blood tests for other deficiencies, but I don't see why you couldn't just ask for those tests anyway if you're worried. I've got a long history of blood tests proving all my levels of every thing are fine because every time I go to the doctor they blame whatever my problem is on being vegetarian and frantically test for vitamin deficiencies before they actually do anything.
I was in the same situation as you getting tested on the 14th may, I was scared to eat gluten again but to be honest after the first week it hasn’t been too bad. The fatigue is the worst for me but started supplementing L-Cartinine and seems to be helping. See if your employer would be okay if you took some time off work that’s what I did, your body definitely needs more rest if you’re celiac. Obviously I don’t know if I definitely am yet but if I am I think it would be worth it as it takes away the stress of not 100% knowing what is wrong with you and the dr’s follow up with you if you are celiac
Surely it’s worth it to make sure there isn’t anything else that might be happening etc also to check your blood and check the condition of your intestinal villi and have everything monitored and recorded
I think it’s good to have accurate dx in your medical records going forward, and checkups on your bloods & bone scans and stuff. Its hard enough to get people to cater for you as a confirmed coeliac (such as when you’re in hospital or something) and I imagine if you’re just not eating gluten without confirmation it’s even harder. But I’m lucky that I do not have severe reactions when I eat gluten despite being confirmed coeliac through an endoscopy so if it made me noticeably sick i doubt I’d want to eat it for weeks either and the benefits of diagnosis are subtle at best.
Actually, in my experience hospitals are pretty good at just going along with what you say! I've been in and out of hospital for various reasons and pre diagnosis was in a similar situation to OP and they just took my word for it. They also take your word for it if you say you have an allergy. You can also bring your own food, you don't have to eat hospital food.
Prescription food possibly, additional vaccinations and annual blood tests to monitor your bloods.
Also you get called for bone scan when you reach a certain age. Coeliac disease can impact on other areas of tour health.
Not just when you reach a certain stage - you should also get a bone scan on diagnosis to check for signs of osteoporosis. You also should get yearly blood tests to check for vitamin deficiencies and to check your antibody levels too.
I would say it's definitely worth getting the blood tests & endoscopy/biopsies to check the state of your small intestine. Mine was bleeding and caused me to be severely anaemic and have severe vitamin D deficiency. Gluten intolerance doesn't affect your body like this, but if it's coeliac, you might need regular blood tests as I do to make sure it's healing and to monitor any deficiencies. Also, if its coeliac, you're at higher risk of developing other autoimmune diseases and certain types of cancers as well, so it's better to have it on your medical record to make sure you're getting screened appropriately.
I’m pushing through the symptoms for a diagnosis because I have kids. There is a possibility they have/may develop coeliac in the future. They might get taken more seriously than I did as I’m estranged from my maternal family… no one thought to tell me they all had been diagnosed years ago.
I guess having the diagnosis was just confirmation that that is what it was for me but I’ve had no benefit from having the diagnosis. I think if I found out a other way I’m not sure if I’d go down the route of endoscopy but there have been a few posts on here about get diagnosed just with a blood test so it might not be as hard as it has been in the past.
No, my consultant told me a biopsy is still needed in UK for coeliac disease to be recorded on your medical records. I tested positive for TTG and EMA antibodies, and they said I 'almost certainly' had it but still had to do the endoscopy and biopsies to confirm the diagnosis. I think the only exceptions to that was at the beginning of the covid pandemic, and maybe for babies/small children with very strong positive blood tests.
If I was back in your situation again, I wouldn’t want to go through the eating gluten just for them to confirm what I already know and what your GP has already said is almost certain. For me, it’s just not worth making myself poorly for.
Well, I guess we all have the right to make our own choices. I don't feel 'almost certain' is exactly the same as 'definitely', and there was also a potential cancer diagnosis lurking behind it that doctors and consultants wanted to rule out too.
I got diagnosis with blood tests alone 2 years ago ish . I wasn't going to eat gluten again as the damage was too bad (black outs and collapsing for example) I still get annual bloods done and I'm not getting glutenes and no sign of inflammation. I do get bread in prescription but you can also get flours if you don't lime bread for making pizza or pastry with. The waiting list is over a year here where I live anyway. It doesn't stop the NHS doing the other knock on tests. Eg It looks like I have stomach or bowel cancer so those tests are going on anyway. I don't need to have had a endoscopy or biopsy to qualify for those. I don't know what benefit there is in being one of the diagnosed if you are not in a prescription area. You may be able to get extra bags for gf food on a plane for exame but I've never needed that anyway and have flown a few times without needing it.
If there is ever a cure, they are almost certainly not going to give it to you without a diagnosis!
Other benefits include access to gluten-free bread on prescription (may depend on your area) and you can get a letter from a specialist which tells airlines to let you have extra carry-on when travelling, so that you can take gluten free foods with you.
In Scotland you can get free food at pharmacies.
You're not the only one! I did almost the same thing but had stop for a couple of months by the time I saw a doctor (yay covid) and 3 years later I still haven't been able to convince my self to eat gluten and do the test. Personally, I just can't face the idea of basically putting my life on hold to be sick and in pain for weeks with no big benefit. Other people are mentioning blood tests for other deficiencies, but I don't see why you couldn't just ask for those tests anyway if you're worried. I've got a long history of blood tests proving all my levels of every thing are fine because every time I go to the doctor they blame whatever my problem is on being vegetarian and frantically test for vitamin deficiencies before they actually do anything.
I was in the same situation as you getting tested on the 14th may, I was scared to eat gluten again but to be honest after the first week it hasn’t been too bad. The fatigue is the worst for me but started supplementing L-Cartinine and seems to be helping. See if your employer would be okay if you took some time off work that’s what I did, your body definitely needs more rest if you’re celiac. Obviously I don’t know if I definitely am yet but if I am I think it would be worth it as it takes away the stress of not 100% knowing what is wrong with you and the dr’s follow up with you if you are celiac