Follow up after diagnosis

[Alison_71]

Hi. Im new here. I was diagnosed with coeliac disease 4 months ago. I have been seen by a dietitian and have been following a strict gluten free diet. What is the next stage in follow up appointments and is everyone offered a bone density scan ? Just a bit in the dark of what happens after diagnosis.

[virgolizzy]

Hi, you are normally offered a bone density scan, chase up your dr for that & you are then offered an annual check up either with your dr or as is the case with me, with my dietician. The blood test results are sent to her & we discuss those along with how the gf diet is going. If there are any concerns that she can't spdeal with, then she will refer you back to your GP. The same process happens with my Mum, with the density scan & then her annual appt is with a Coeliac Nurse & after the first appt, the rest are via the phone, unless my Mum has any major concerns. My Mum is in Wales & I'm in England.

In a lot of ways, unless you have any issues you are on your own to manage it, except for the annual check up. That's why these groups are particularly helpful for more advice etc.

The initial journey is always the hardest, you go through a sort of grieving/resentment process for the food you can't eat, but in the end, feeling sooo much better makes it worth while & you start thinking about the food you can eat, rather than the food you can't. I always think we are also very lucky, as we can manage our disease, you don't get that chance with some diseases.

Anyhow, good luck on your journey back to good health.

[Alison_71 in reply to virgolizzy]

Thankyou Virgolizzygote for your reply. I will chase up the bone density scan. I am feeling much better but your right I did go through a grieving stage off the food i can't have and I find it hard when eating out as I don't like to bring attention to myself asking for the gluten free menu! Makes me feel like the restuarant will think I'm on a faddy diet rather than for health reasons. I'm sure I will over come this though.

Thanks again.

[virgolizzy in reply to Alison_71]

You will & we have all been there. If I don't know or trust the restaurant, especially at the beginning, I will always ask for a plain steak or chicken & a salad, with a basic olive oil & balsalmic vinegar. That way I can be happy with the food without all the explanations you have to give! My absolute pet hate, which drives me mad, is when you are out in a group of friends, you order something basic to avoid the explanations, then a friend tries to 'help' you order & brings up the gf thing & then it seems to always confuse the order & makes a big deal out if it. You know they are just trying to be helpful, but god I wish they would just let you get on with it. I always want to say.."I am 56 yrs old, I think I can manage to order the food for myself" but of course I never do....one day tho! 😂😂

[Alison_71 in reply to virgolizzy]

Do you say anything to the restaurants you eat at about cross contamination? I do worry about what happens in the kitchen with preparation even though you've ordered the gluten free choice.

[virgolizzy in reply to Alison_71]

No I personally never do, albeit a friend of mine who is also a coeliac, always has a chat with the chef personally, to ensure that they really understand & she only eats in restaurants that she trusts.

[liver-bird]

Hi Alison, agree with all that has been said but would add you should join Coeliac org if you have not already done so as they are full of information. You almost certainly will slip up sometimes and be glutened. It still happens to me occasionally after two years but the learning curve is not as steep as it was 😃

Stay in touch with this site as there is lots of understanding and support here. I recently started craving fish and chips so I fried my own and it was delicious and I felt so normal again afterwards haha.

All the best. Diane

[Pat1ent in reply to liver-bird]

Luckily we have a very good chip shop nearby who do gluten free fish and chips on the 1st Saturday of the month between 11.30 and 15.00 hrs. They are very well trained ,so guess who will be first in the queue😀.

[Alison_71]

Thanks Diane. I have found this site very informative I will join coeliac org too. Good to hear from other people's experiences.