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For Those Who Have Had A Negative Biopsy

grommet

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grommet Newbie
grommet
Posted

I know there are many on here who have had a negative biopsy and who think they are Gluten Intolerant and/or Celiac.

Like me you know you have an immune response when eating Gluten and respond well to a gluten free diet . It's not really been a choice to go gluten free as eating the stuff makes you too ill.

I just wondered how you now feel looking back. Are you ok with the fact that you have no formal diagnosis? Do you feel worried about not having follow up care e.g. seeing a dietician, having Iron injections vitamin B12 injections, bone density checks?

How do you go on with having to have time off work. What do you put on your sicknote? Do you still have to go to the doctors with symptoms or to get a sicknote for time off work?

What does your GP put on your sicknote?

How do you go about travelling abroad and taking food? People who have a formal diagnosis tend to take a Dr's note to cover them taking food abroad - and in some cases cover an extra baggage allowance.

Do you think about your children, and their symptoms or what they might have to go through to get a diagnosis in the future.

It may help if some of us post our stories, and help others in a similar situation (even if they don't know it yet).

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little d Enthusiast
little d
Posted
I know there are many on here who have had a negative biopsy and who think they are Gluten Intolerant and/or Celiac.

Like me you know you have an immune response when eating Gluten and respond well to a gluten free diet . It's not really been a choice to go gluten free as eating the stuff makes you too ill.

I just wondered how you now feel looking back. Are you ok with the fact that you have no formal diagnosis? Do you feel worried about not having follow up care e.g. seeing a dietician, having Iron injections vitamin B12 injections, bone density checks?

How do you go on with having to have time off work. What do you put on your sicknote? Do you still have to go to the doctors with symptoms or to get a sicknote for time off work?

What does your GP put on your sicknote?

How do you go about travelling abroad and taking food? People who have a formal diagnosis tend to take a Dr's note to cover them taking food abroad - and in some cases cover an extra baggage allowance.

Do you think about your children, and their symptoms or what they might have to go through to get a diagnosis in the future.

It may help if some of us post our stories, and help others in a similar situation (even if they don't know it yet).

Hi

I do worry only for the fact that my family thinks that I can still eat normally, I do not have an "offical diagnoses" I have struggled with this for some time because I don't have an offical diagnoses, I do worry with my daughter if she will get worse over time she is 8 and she has suffered with Constipation all her little life, which is what I suffered with my first few years and then other symptoms came along the older I got. I am not as sick as everybody else here, I have from time to time been sick mysteraly when no one else was but this only happen a few times and then I was fine but still felt awful. So I do not have any kind of vitamin injections. I did have a bone density check done and everything was normal neak was 0.4, spine -0.4 and hips -0.4 my ortho doc only did it because of my foot that was taking its time to heal from being fractured. When I do have a bought of D I just deal with it usually at home and hopefully by the time I need to go anywhere I have finished, but at work it is hard sometimes, because before I understood what was the matter with me I would be in a patients room and all the sudden I would have to run literally run to the bathroom, or at the grocer store. I have told my coworkers about my problems and some understand and so now when I disappear for a few minutes and say I'm going to the bathroom and head for a certain bathroom they know that I am sick with D and will return shortly. I have not missed any work from having D, as long as I have a bathroom to occupy then I am ok. The only way I miss work is if I have a fever, vomiting or a broken bone.

donna

grommet Newbie
grommet
Posted
  • Author
Hi

I do worry only for the fact that my family thinks that I can still eat normally, I do not have an "offical diagnoses" I have struggled with this for some time because I don't have an offical diagnoses, I do worry with my daughter if she will get worse over time she is 8 and she has suffered with Constipation all her little life, which is what I suffered with my first few years and then other symptoms came along the older I got. I am not as sick as everybody else here, I have from time to time been sick mysteraly when no one else was but this only happen a few times and then I was fine but still felt awful. So I do not have any kind of vitamin injections. I did have a bone density check done and everything was normal neak was 0.4, spine -0.4 and hips -0.4 my ortho doc only did it because of my foot that was taking its time to heal from being fractured. When I do have a bought of D I just deal with it usually at home and hopefully by the time I need to go anywhere I have finished, but at work it is hard sometimes, because before I understood what was the matter with me I would be in a patients room and all the sudden I would have to run literally run to the bathroom, or at the grocer store. I have told my coworkers about my problems and some understand and so now when I disappear for a few minutes and say I'm going to the bathroom and head for a certain bathroom they know that I am sick with D and will return shortly. I have not missed any work from having D, as long as I have a bathroom to occupy then I am ok. The only way I miss work is if I have a fever, vomiting or a broken bone.

donna

grommet Newbie
grommet
Posted
  • Author

Thanks for your reply. I was just interested how other people were getting on. Perhaps I should have posted in the "post-diagnosis" forum and see if I got a few more responses.

Perhaps I should ask for bone checks. I used to have joint pain after eating gluten (like a flu ache joint pain) but I get other aches and pains now. Might be just my age but I suppose I should really ask about a check up.

I take my own Iron and B12 tablets and think I benefit from them but who knows.

I'm taking lots of food on holiday - putting it in hand luggage - and hoping I'm ok.

I also suffer from migraines after eating gluten and I really should review my migraine medication.

I think I may take a trip to the Dr's after the holidays with a small list. and say "I know I had a negative biopsy but these things are affecting me - some directly when I eat gluten, some I think are as a consequence of being ill for a few years".

I'm just hoping there are better diagnostic tools available for our children....

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