Should I Stay Off Gluten Or Keep Going And See A Doctor

[CurrantCottage]

Hi

 

Sorry for posting but I'm desperate for advice. I had a coeliac test about a year ago that was negative and also a wheat allergy test which was negative.  I've mentioned in replies in a couple of other posts that my doctor was surprised I wasnt coeliac because of the history of digestive issues and low ferritin.  Plus I've a long life history of lethargy - as a child I was labelled lazy, as an adult I've learned to push myself but I've rarely had excess energy!  I live in the UK and my doctor isnt really interested in taking this any further and told me to take an iron tablet every day for life - she said every time I get tested for something it costs the NHS a lot of money.  I found myself a reputable nutritionist who is knowledgeable about the vegan diet as some years ago I discovered cutting out dairy eased my asthma and sinus problems, she suggested I give up gluten which I have done for three weeks.  It was amazing - my life long "tired/brain foggy head" lifted and all but went and my continual bloating was nearly gone and the horrendous  noises my stomach used to make vanished too.  I decided to do a little test and started adding gluten products back in yesterday - by yesterday afternoon/evening my stomach was grumbling and groaning, I felt bloated and tired.  Today I've got up and I feel wiped out, my head hurts, is tired and heavy and filled feeling like I've got a cold, and I'm half constipated/loose when I dash to the loo and have reflux and I've cancelled work today - I'm a self employed dog walker & house cleaner and I just could not drum up the energy and I'm someone who'll take paracetamol when they've got a cold and work through it.

 

I'm so sorry to bore you all but I just dont know whether to say thats it, and stay off gluten for life or keep eating it and go see a different doctor in two weeks for advice and see if there's any point retesting, I had made the appointment recently as my dentist has referred me to a peri-dental consultant as I've having huge issues with sensitive teeth and receeding gums which I've been told could be linked to gluten intolerance.

 

Really appreciate any advice as I'm beginning to feel like a hypochondriac - everyone: friends, family and my doctor are sick of me whinging on about my digestive and stuffed head!
 

Ali 

[Brit1612]

I am not the expert that most of the people on here are, but I just wanted to say welcome and I am glad you have found relief.  Since no one has answered yet, I will attempt to answer you to the best of my knowledge .  

 

How serious are you about wanting / needing a diagnosis?  If you don't mind treating yourself as a celiac for the rest of your life (without proof) then you could just continue on the way you are.  If you are gluten intolerant vs celiac I have heard some people don't have to take the cross contamination so seriously.  If it would help motivate you about avoiding cross contamination or for family to take you serious, then you may want to seek a diagnosis.  If you think you will eventually want a diagnosis, then it is best for you to do that now, not after you have been gluten free for months or even years.  You have to be eating gluten for weeks before testing for it to be accurate..... So if you want to get tested you should start adding gluten back into your diet immediately, and try to get in to see a GI for the blood test.  Since you haven't stopped eating it for too long yet, you would probably be able to get tested fairly quick, compared to someone who needs to do a full "gluten challenge".

 

You mentioned that they tested you for celiac last year, what test did they run exactly.  The bad thing is there are numerous blood test and celiac patients are sometimes only positive for one of them.  So if they did not test everything on you, then they could have missed your diagnosis.  Also, they should have checked your total IGA to make sure the test results could be trusted.  Hope this helps!  I'm sure some of the others will jump in and give you their thoughts as well.

[cyclinglady]

I am not the expert that most of the people on here are, but I just wanted to say welcome and I am glad you have found relief.  Since no one has answered yet, I will attempt to answer you to the best of my knowledge .  

 

How serious are you about wanting / needing a diagnosis?  If you don't mind treating yourself as a celiac for the rest of your life (without proof) then you could just continue on the way you are.  If you are gluten intolerant vs celiac I have heard some people don't have to take the cross contamination so seriously.  If it would help motivate you about avoiding cross contamination or for family to take you serious, then you may want to seek a diagnosis.  If you think you will eventually want a diagnosis, then it is best for you to do that now, not after you have been gluten free for months or even years.  You have to be eating gluten for weeks before testing for it to be accurate..... So if you want to get tested you should start adding gluten back into your diet immediately, and try to get in to see a GI for the blood test.  Since you haven't stopped eating it for too long yet, you would probably be able to get tested fairly quick, compared to someone who needs to do a full "gluten challenge".

 

You mentioned that they tested you for celiac last year, what test did they run exactly.  The bad thing is there are numerous blood test and celiac patients are sometimes only positive for one of them.  So if they did not test everything on you, then they could have missed your diagnosis.  Also, they should have checked your total IGA to make sure the test results could be trusted.  Hope this helps!  I'm sure some of the others will jump in and give you their thoughts as well.

Well said!

[CurrantCottage]

I am not the expert that most of the people on here are, but I just wanted to say welcome and I am glad you have found relief.  Since no one has answered yet, I will attempt to answer you to the best of my knowledge .  

 

How serious are you about wanting / needing a diagnosis?  If you don't mind treating yourself as a celiac for the rest of your life (without proof) then you could just continue on the way you are.  If you are gluten intolerant vs celiac I have heard some people don't have to take the cross contamination so seriously.  If it would help motivate you about avoiding cross contamination or for family to take you serious, then you may want to seek a diagnosis.  If you think you will eventually want a diagnosis, then it is best for you to do that now, not after you have been gluten free for months or even years.  You have to be eating gluten for weeks before testing for it to be accurate..... So if you want to get tested you should start adding gluten back into your diet immediately, and try to get in to see a GI for the blood test.  Since you haven't stopped eating it for too long yet, you would probably be able to get tested fairly quick, compared to someone who needs to do a full "gluten challenge".

 

You mentioned that they tested you for celiac last year, what test did they run exactly.  The bad thing is there are numerous blood test and celiac patients are sometimes only positive for one of them.  So if they did not test everything on you, then they could have missed your diagnosis.  Also, they should have checked your total IGA to make sure the test results could be trusted.  Hope this helps!  I'm sure some of the others will jump in and give you their thoughts as well.

 

 

Thank you so very much for your advice !!!  I think I am serious about wanting a diagnosis - somewhere down the line, I will wonder and wish I had!.  Also, it would help family and friends etc to take me seriously as everyone is always making a "thing" about what I eat ....or dont eat!  Particularly the dairy - people just will not believe that when i eat dairy (and its not an instant thing, it usually takes a week to start having an effect) my reflux gets worse, my asthma gets worse and my sinuses stuff up as do my ears!.  As a child I was forever on antibiotics every winter - 2+ courses for ear/throat/sinus/chest infections - since cutting dairy out I've not needed any antibiotics, even when I've tried adding it in again ...I've only managed a couple of weeks and I start to feel it and stop again !  I guess one of my fears, if this is pathetic to say, is that they do not find anything - that everything is ok and clear with just acid reflux diagnosed but at least I will know that I do not have any allergies or intolerances!

 

This will probably be hard to understand but I do not know what they tested for exactly.  I don't know if there are others from the UK on here but when my doctor tested for "Coeliac", phoned me when the results came and said "its negative" - that was it, nothing else.  I've tried in the past to ask at reception for printouts of my various blood tests from the past couple of years but they are always so unhelpful and short and say that I need to get in touch with the Doctor and ask her permission and I've always been a bit nervous of asking the doctor in case she thinks I'm challenging her.  Its hard here - they are so overworked and you are allocated 8 minutes with them but they often get you in and out quicker as they are so over-run ...sometimes I've gone in for something and haven't even had a chance to sit down before I'm out the door again!

 

I have had a thought this afternoon though, my husband gets free private health care for us as a benefit with his job.  I've rung them and they say if I go to the doctor with one of their referral letters and explain how I'm feeling then they will refer me on to the right consultant and then I will get a complete test of things (and I'll get the printout to satisfy my mind!)  I've made an appointment for two weeks time to see the doctor and I will make sure that I'm a good 6 weeks back on gluten first before I do see someone.  Its strange though - I felt so ill this morning but its a lot easier now, the fatigue and brain fog comes in waves and my reflux is just mild.  I was thinking too - I always take antihistamine every day to help with the itching I get and when my stomach really plays up I take domperidone and occasionally omeprazole - I think I will lay off everything so that nothing can hinder the results !

 

I'm so pleased to find this forum - so often I think "its me imagining it", then I'll get a wave of exhaustion, or feel I need to dash to the loo and the bloating will start up!

 

Thank you again !

 

Ali