Hospital Appointment

[karen G]

I have got a Hospital appointment coming up to assess how well i am doing on the gluten-free diet,i still have ongoing symptoms to a lesser degree,was wondering what key questions i should ask to get the most from the appointment,i.e more blood tests or endoscopy's to be done in the future,any help would be great,thanks.

[jenvan]

How long have you been on the gluten-free diet and what exactly are your persisting symptoms?

[karen G]

How long have you been on the gluten-free diet and what exactly are your persisting symptoms?

<{POST_SNAPBACK}>

i was DX last October so have been gluten-free WF approx 10 months,in May i was also DX with IBS,my symptoms are burning sensation (behind naval)stomach ache,lower back ache,bloating,nausea and a heavy (pressure sensation)in the pelvic area.I dont have all these symptoms together but at least one of them every day,getting worse as the day goes on,have forgotten what its like to have a normal tummy that you dont notice is there. the biggest improvement since going gluten-free is the return of my energy so at least something is going right,i am pretty sure that i am not being glutened so find it frustrating not to see a vast improvement like some people,hence wanting to make the most of my hospital visit.

[jenvan]

Karen-

Hmmm...I'm sure people here will have some good ideas for you. My first thoughts--you are sure even your lipsticks, lotions, makeup, soaps are gluten free. And that you aren't taking in a product that is perhaps contamination--perhaps even one that is processed on the same lines as non gluten-free foods, that says is gluten-free?

Do you have other food intolerances? Could there be a relationship between these symptoms and a soy, milk/casein or other food allergy/intolerance?

There are also foods that give me an "IBS" type response--even if they are gluten-free. Those being corn, turkey, chocolate at times, caffeine...

Could this be gallbladder related at all? Just wondered-as naseau, back and abdominal pain were on the list.

What does a typical day look like for you food wise--an example of what you are eating? (Still trying to brainstorm here

[karen G]

Karen-

Hmmm...I'm sure people here will have some good ideas for you.  My first thoughts--you are sure even your lipsticks, lotions, makeup, soaps are gluten free.  And that you aren't taking in a product that is perhaps contamination--perhaps even one that is processed on the same lines as non gluten-free foods, that says is gluten-free?

Do you have other food intolerances?  Could there be a relationship between these symptoms and a soy, milk/casein or other food allergy/intolerance?

There are also foods that give me an "IBS" type response--even if they are gluten-free.  Those being corn, turkey, chocolate at times, caffeine...

Could this be gallbladder related at all?  Just wondered-as naseau, back and abdominal pain were on the list.

What does a typical day look like for you food wise--an example of what you are eating?  (Still trying to brainstorm here

<{POST_SNAPBACK}>

i am confident that everything ieat is gluten-free,dont wear lipstick daily and as for the other items i thought you had to ingest gluten for it to affect you,i am going to ask at the next appointment about other intolerances.

will ask about the gallbladder, but dont really suffer pain, just discomfort and aches.

having said all this i know it sounds awful but it doesnt stop me living a normal life

as i am not unwell enough to be house bound, so still think myself lucky as i know coeliac disease is not the worst thing i could suffer from.

a typical days menu could consist of fruit,veg, jacket potatos,tuna,salad,gluten-free WF pasta, bread and any meal cooked from scratch,oh and i love cooked cheese,as you can see i havent lost my appetite.

thanks for the interest, its most appreciated.

[KaitiUSA]

i thought you had to ingest gluten for it to affect you

You do have to ingest it but things like shampoos can easily get to your mouth. Think about soaps too...wash your hands with soap containing gluten and then touch food? Then that means your food is contaminated and you could be getting traces into your mouth.

You have to look at every possible angle.

Alot of nail polishes, lotions, shampoos, etc have gluten in them so they really should be checked too.

If you had blood tests come back high before then he/she should do those same tests to see if the levels came down at all.

[jenvan]

It seems like you ingest a fair amount of dairy--it might be worthwhile for you to eliminate it for 2 weeks or so and see if you notice a difference. I have other food intolerances and have gone dairy free. Soy especially gives me gas and bloating.

[karen G]

thanks for all your suggestions,just goes to show that washed and dry hands are not always safe will certainly double check absolutely everything.Will ask at my next Dr's appointment if i could be lactose intolerant to see if they run any tests,i could still be suffering as i have heard that it could take up to two years for the gut to heal.The celiac disease could have been doing damage to my gut for a number of years so shouldnt expect too much too soon,anyway thanks again its reassuring to kniow i can ask you guys for info and a chat.