This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
So, today after being chased, my report came back after my double endoscopy 3 weeks ago.
Report says no evidence of ceoliac but signs of a food allergy which gives indigestion symtoms. The report doesn't suggest I get tested for this allergy (glutten perhaps???) - just that I take some steroids for two weeks. I am frustrated, stressed and still feel ill. Any advice?
I don't think the spray to numb the throat is unusual. I believe it's standard practise here. I'm not clear why still on gluten either - there was talk of needing to have a colonoscopy, so that might be why. The whole matter is rather bizarre I think. I guess I'm just going to have to wait and see what comes of the lump biopsies and the ceoliac biopsies but it's certainly not a procedure I am keen to repeat again without sedation.
Firstly, thanks for all the support as my endoscopy approached. I was booked in yesterday morning. Nurse explained everything and also offered me a new procedure which is to put the scope in via a nostril. Initially I was not in favour of it but when she said it meant less gagging and the ability to talk during the procedure I agreed. Unfortunately, the scope couldn't go down so they had to change tac and go down thru the throat. The throat spray worked its magic but I did find my body naturally trying to reject the scope. After the procedure the doc said 'You've done very well - now we've taken a couple of biopsies of the wee lump in your throat which we'll send away for investigation. Try not to worry they nearly always come back benign and it (the lump) is very small. Also there is some slight inflammation of your stomach lining."
I was absolutely stunned. I didn't know anything about this 'wee lump'. However, I held it together enough to say, 'OK. What about the ceoliac?' to which I was greeted with a completely blank look followed with, 'We weren't investigating ceoliac.' Very quickly followed with a look at my notes, profuse apologies and being told I could either have it done now or come back. So, given I was there and had no wish to return I had it done again! Once finished, more apologies and told that in terms of ceoliac things looked Ok but would need to wait for biopsy results. In the meantime keep eating gluten...
What a day! I'm trying not to panick about the 'wee lump' but I have to say that I spent most of the rest of yesterday in a daze!
I've been quiet the last few weeks - life has been hectic. I now have a date for my endoscopy which will be on Tuesday morning and as the date approaches I am becoming more anxious, even though I know, from what I've read on here, that it'll be fine. My doc says that the results will take a couple of weeks to come through but that I can cut gluten out immediately. Once the results are in then she'll arrange for me to see a dietician. Generally I am absolutely dreadful at planning my meals and quite weak willed when it comes to food. Now that the reality of taking responsibility for my diet in an organised, disciplined manner is only a few days away I want to stick my head in the sand! I know I'm just going to have to be sensible and suck it up but I do wonder if others have had similar experiences.
I'm very pleased it went OK for you and now it's a case of waiting a couple of weeks. I am due to have a colonoscopy and endoscopy in the next couple of months and am somewhat nervous too so it's reassuring to read the posts on here. Are you know able to get on with a gluten free diet or do you need to wait?
Has your doc advised you to do anything differently during these 3 weeks? And do you know what 'high' means in terms of numbers? My LFT came back at 40 when average is 35. I was worried but doc said it's only a bit high and she sees results in the hundreds. I felt reassured and have retake test in 6 months. Despite reassurance i'm still going to reduce alcohol intake. Did your doc give any indication as to why liver test might be raised?
Many thanks! I think I have been very fortunate with my doctor and am grateful for it. The same goes for this forum!
At the moment, of course, I'm still on the gluten (as per doc's instructions) until the endoscopy results. I will be very interested to discover what difference will be made once it's removed. Either way, I guess I'll likely feel healthier!
Yes, that's exactly what the doc said - keep up the gluten till the endoscopy. Now that I've seen the doc I have less of a problem with that because I know there is a definite end in sight. In fact, I've decided to see it as a blessing in disguise because it gives me time to read and research more as well as become ready for it mentally, if you know what I mean.
One interesting comment from the doc was that she said that in the UK the estimate is between 2 and 3% of the population have Ceoliac and that the profession is now becoming far more proactive about testing!
I've made an appointment for my son to get his bloods tested in a couple of weeks - not that he knows that because he'll freak!
I guess I will be around this forum for a while and I hope that one day I'll be able to contribute and help others in the way I have been.
So, Doc was very good. She said the normal Coeliac scan range is 0.5 to 5 and my bloods came back 7.9. Really not quite sure what that means but I have been referred for an endoscopy. Approx two months to wait but might be sooner. I also have to have a colonoscopy (which I knew about already) so she is going to request I have both at the same time.
She did acknowledge that the biopsy could come back negative 'if they don't get the right bit' and says that if that is the case then she will still put me on a gluten free diet to see if symptoms ease. She also agreed that my son should be tested and has referred me for more bloods to test vitamin levels. So, all in all a pretty good consultation. Just wish I knew a bit more about what 7.9 means but in a way it doesn't matter.
Fantastic!! Thanks everyone. In a couple of hours I'll have been to the doc and hopefully know a bit more. I've copied out some of the info re test names etc and am going into the appointment armed as it were. To date I have a pretty good relationship with my doc so hopefully she won't take offence that I'm going in as an amateur doc.
Many thanks for the reassuring and informative replies. It really does help to read about other people's experiences - albeit that they can be difficult for folk. My appointment with the doc is tomorrow after work so I might be a little clearer then.
I plan to go in with a couple of questions depending on the specific results.
1) What if the endoscopy comes back negative given that false positives are unheard of?
2) How long a wait (UK system) for endoscopy and results? I have other health issues (don't we all?) which means I hope I can get this done quickly.
3) I have an 11 year old son who has had ongoing bowel probs all his life - has he been tested? If not, then surely that is a priority.
If endoscopy positive then what and how long will it take?
If anyone has any other questions they think it would be useful to raise with my Doc then advice appreciated.
Hello. You have no idea how much your reply helped - thank you very, very much. I now feel like I can go to the doc a bit more prepared. My gut reaction (groan ) is to bypass the endoscopy and just get glutten free to see if that improves my symptoms.
I don't know if this is common or not but I'm now finding eating quite difficult because I feel as though I am making myself worse when I should be doing the opposite. I find that I am vomitting some hours after eating. If I do have to have the endoscopy I am going to try to push for it as quickly as possible because the stress of this is having quite an affect - as I'm sure it does for everyone. I'm very glad I've found this forum!
I'm glad you enjoyed your visit to Scotland. It is a beautiful wee country. Which part did you visit? I grew up in the Highlands but have lived my adult life in Edinburgh.
I'm a newbie posting from Scotland.
A couple of weeks ago I had some bloods taken by my request because I've had maybe two years of toilet trouble in terms of diarrhoea. The bloods came back and with an indicator of underactive thyriod and something to do with my celiac results. I had no idea what celiac is at all but off course, googled it. I have a number of the symptoms; tiredness, bruise like a peach, sudden vomitting, constant trips to the toilet, tummy pain and bloating. I am not underweight howeverI thought it was IBS to be honest. What I'd like to know is if the blood tests taken basically give you a yes or no in terms of being likely to have it or is it that I might be on the threshold. I can't see my doc till next Tues and I just want to know what expect because I am worried. From what I've read, in the UK the next step is to have an endoscopy if the bloods have come back indicating it. I'm just worried really.