worried about my daughter

[Shelly27]

Hi , my names shell , I'm new to this , my daughter is currently having tests for celiac disease . She's had a few rough months , sickness , diahreah. , pain , first diagnosed with IBS , but blood tests have shown she's low in B12 and they are querying celiac , any advice on how to support her she's 21 years old , thank you

[RodeoJoe]

Being diagnosed with coeliac disease isn't such a bad thing. It just means changing diet, and that should resolve all of the health problems she might be having now.

[Shelly27 in reply to RodeoJoe]

Thank you , hopefully once all her tests are back she can get her health back on track .

[Penel]

Have a look at the Coeliac UK website, if you haven't already. It gives lots of helpful advice.

coeliac.org.uk/home/

[Shelly27 in reply to Penel]

Thank you

[Lisahelen]

Yes do look on the coeliac website but there is also a very informative forum for b12 deficiency- pernicious anemea here too as well as their own website which lists symptoms etc

[Jacks]

Good news is that CD is completely curable by following a strict gluten free diet - no medication needed.

But embark on the diet until all tests have been completed, including upper endoscopy. She needs to be eating gluten to produce the antibodies.

Then joining a society like Coeliac UK or other country's (depending upon your geographical location) can help you get your head around the intricacies.

[knitwitty]

Hi I can completely sympathise with you , my 20 year old son has just been diagnosed with coeliac disease, he has been suffering with severe symptoms for 2 1/2 years. I hope your daughter is soon feeling better and although it can be bit overwhelming finding out that you have a problem like coeliac disease I think if you have been feeling unwell it can be something of a relief to finally find out what is wrong.

My son has had his life on hold for the last few years which has been awful for him so he is glad to know what has caused all his symptoms.

Coeliac uk is a great place to start, they have a huge amount of information for both coeliacs and anyone else trying to avoid gluten.

I hope your daughter is soon on the road to recovery.

[Shelly27 in reply to knitwitty]

Thank you , her test came back inconclusive but she had already cut gluten out of her diet , she's been feeling so well she doesn't want to eat gluten again , it is such a worry when you don't know the cause , I'm glad your son has got his diagnosis ,, she's got to see the doctor about her B12 and to explain about cutting gluten out her diet , I know this has probably affected her results but the difference in her health is amazing , she's joined groups herself to find out information , I hope your sons health improves now he-knows the cause of his symptoms fingers crossed they both can get well and just enjoy being young x

[Adrianpb in reply to Shelly27]

If you don't know its CD, then it could be FODMAP which includes all the gluten foods but also others like watermelon and onions. Your right though, she'll never go back to gluten just to take a test, common theme here. So eliminate the FODMAPs for two weeks, reintroduce them and record any symptoms. If none, CD is probably the correct diagnosis. Check for milk intolerance too, many of us celiacs have that as comorbidity.

[knitwitty]

Hi Shelly,I'm glad your daughter is feeling much better. Did her GP do a blood test to check for antibodies to gluten as this is how my son's GP first identified the possible cause of his problems.

I know it can be really hard if she has given up the gluten and is starting to feel somewhat better, but it is absolutely essential ( to obtain a definite diagnosis) that she eats gluten containing foods twice a day prior to being tested. It is easy to get a false negative reading to the blood tests and biopsy tests if she hasn't been eating much gluten for at least 6 weeks prior to the tests.

I would highly recommend joining coeliac UK as they have brilliant helpline and they can point you in the right direction with regards to getting diagnosed much better than I can. If your daughter is a student there is a reduced rate £12 per year, it will give you access to support groups and fundraising events. I joined as a household which was £30 per year but the information is brilliant and you are able to download an app for your phone which lets you scan food at the supermarket to check if it's gluten free.

I hope your daughter gets a definite diagnosis one way or the other so that you can rule out other conditions, I have read some brilliant books on the subject which might explain your daughter's condition if it isn't coeliac disease, it seems that some of us can be extremely sensitive to gluten whilst not actually having the auto immune condition "coeliac disease".

I will list them below, they are available from Amazon or you might be able to get them from your library.

Gluten Freedom - Alessio Fassano MD ( this is brilliant , written by an Italian/American paediatrician who is a pioneer in treating coeliac disease)

Gluten Attack - Professor David Sanders ( Professor of Gastroenterology - Sheffield, he runs the UK's leading clinic for gluten related problems)

Coping with coeliac disease - Karen Brody

Coeliac disease- the essential guide - Kate Coxon

These books are all great at helping you to understand coeliac disease and other gluten related problems.

I hope your daughter continues to improve, don't hesitate to reply again if I can be of any more help.

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