Coeliac blood test

[Sue Brown]

Hello

i would be so grateful for some opinions.  At the moment I am really unwell and I know that my symptoms resemble coeliac disease. Just to give some history. I’ve suffered for years with IBS and in 2017 started having tinnitus and mouth ulcers. I also had flare ups of herpes simplex on my lips and in my mouth. I started taken vitamins including b12 and folate and symptoms fluctuated. Over the past month I know that I’ve eaten gluten without any thought at all and quite a lot of it. My ears started ringing loudly, but I’ve suffered extreme tiredness and headaches. I have no energy whatsoever so I started taking B12 and folate again. After a dental appointment this week it was noticed that my tongue was red and blood tests were taken.  The results were normal for B12 and folate as I have been taking supplements. I read abou coeliac disease and started on a gluten free diet for two days.  Yesterday was a good day but today not so good. I contacted my doctor about having a test. I was told to eat gluten for six weeks. I wasn’t happy with this and they said I could be tested at the end of next week but I had to eat an unrestricted diet. So today I ate two biscuits and was literally doubled up afterwards.  I’m I right in being u willing to eat gluten for the next six days to get a diagnosis as I don’t want to be ill.  Any advice will be gratefully received. 

[Scott Adams]

Although it's difficult, it would be better if you could manage 6 more days of eating gluten so you could get the celiac blood panel done. We've seen a lot of self-diagnosed people here who forever wonder if they really need to be gluten-free, and some go back to eating gluten because they are not sure that they need to be gluten-free.

A formal diagnosis would allow you to get more follow up care from your doctors, but might make private life (and possibly health) insurance more expensive. 

Based on the symptoms you described it certainly sounds like gluten sensitivity might be the answer, but keep in mind, they can only test you for celiac disease (~1% of people have it), but not yet for non-celiac gluten sensitivity (~12% have it). In the end, even if your test is negative for celiac disease you may end up going gluten-free anyway.

[Sue Brown]

Thank you so much for your reply. It is horrible to feel so alone in this situation. I will try to eat a little gluten for the six days if I don’t feel too ill. I have a supportive family which really I couldn’t do without as I have not had the energy to do anything today’s and basically spent a lot of it crying as I feel so awful. I haven’t slept a full night for many years and this isn’t helping either 
fortunately I’m in U.K. and so don’t need medical insurance and really feel for you in the USA having to think about that as well. 
so glad that there are forums like this available. 

[Scott Adams]

Some of these tips may help:

 

[cristiana]

Hi Sue

If you possibly can, I would agree with Scott and would encourage you to try to hang in there and consume gluten until the test.  I think a couple of slices of normal bread a day or similar would normally be recommended, but as much as you can possibly can tolerate.

There are benefits from having a formal coeliac diagnosis in the UK - you should be followed up by a consultant, and depending on the area you live in you should get an annual blood test to check for diet compliance and complications, an NHS nutritionalist referral and every few years a DEXA bone scan to check for osteoporosis, a possible complication of the disease.  Also, coeliacs are considered to be category 6 when it comes to Covid vaccinations, and are eligible for flu and pneumococcal vaccinations.

Cristiana (from the UK!)

Edited August 14, 2021 by cristiana

[Sue Brown]

47 minutes ago, cristiana said:

Hi Sue

If you possibly can, I would agree with Scott and would encourage you to try to hang in there and consume gluten until the test.  I think a couple of slices of normal bread a day or similar would normally be recommended, but as much as you can possibly can tolerate.

There are benefits from having a formal coeliac diagnosis in the UK - you should be followed up by a consultant, and depending on the area you live in you should get an annual blood test to check for diet compliance and complications, an NHS nutritionalist referral and every few years a DEXA bone scan to check for osteoporosis, a possible complication of the disease.  Also, coeliacs are considered to be category 6 when it comes to Covid vaccinations, and are eligible for flu and pneumococcal vaccinations.

Cristiana (from the UK!)

Thank you so much both for your comments.  I’m feeling a little better today but still exhausted although I managed to have a better sleep.  I’m going to take your advice and just eat a little gluten for the next few days  even if it’s just two biscuits. I realise this will be my only chance of a test. 
if it’s negative as Scott said I ll still follow gluten free and see if I feel better. 
thank you for this site

sue x

[cristiana]

You are more than welcome, do feel free to come back to us if you need any further support.  ☺️  Glad you had a better night's sleep.