Worried Mom having an emotional night

[Loobiej 1]

Hi All

Well Jessica has now been gluten free for 9 weeks, the first couple of weeks were up and down and then we had a really bad week after that we saw a big improvement, the dietitican at about 7 weeks wanted us to try her with barley to see how she reacted so she had oatabix and barley juice for about 4 days and then we had to stop she was in alot of pain and we had many toilet visits, we then went back on gluten free and shes now a different child, school have said shes applying herself more in class and shes more alert and we are seeing this at home, Jessica would go to the toilet about 4 to 6 times a day, she now goes twice a day. She has much more energy and her excezma or DH hasnt flared up, Anyway we had our consultant appointment yesterday and he was very pleased with Jessicas progress, her weight has stayed the same since september but the good thing is shes not lost any while been gluten-free, he talked more about Jessicas stool results and told us they were alot of malabsorption detected which is a sign of celiac, Jes also had an xray he said this was ok they were no sign of leaky gut or anything else, he wanted to do this just to rule other things out. He checked Jessica skin and noticed the improvement too, we were sure that he was going to ask for us to put Jessica on wheat again for him then to go ahead with the endoscopy, but he said hes diagnosing her we celiac without this for the moment as shes had such a good response to the diet and the fact that her symptons have cleared up and the results he had from her stools were enough, he did say that in 4 years time if jessica wanted to go back on wheat we would try it and then maybe do the endoscopy but he said for the moment Jessica needs to be stable and he needs her to put on weight, he said shes not srong enough at the moment.

I feel happy that we now have a diagnosis and we will get the support but most importanly we can continue to get Jessica better. Can i ask if this seems right to you all?

He said these were his points to why hes diagnosing her

Positive stool tests

Positive response to gluten-free Diet and weight static

Symptons cleared up

Grandparent has celiac

Thanks for listening xx

[tarnalberry 314]

Hug your doctor for me!

That he won't needlessly make her do something that you have already demonstrated makes her feel worse is FABULOUS! Smart guy!

[mushroom 1,209]

Yay, I am so glad to hear this. You must be thrilled to see her getting healthy again!

[ravenwoodglass 1,346]

He sounds like a great doctor. The one thing I wouldn't do is put her back on gluten in the future. Doctors used to think that kids would outgrow celiac because it can be a long time after they go back on gluten before the gut symptoms appear. Meanwhile the antibodies can attack other organs. IMHO it is not worth the risk. Glad to hear she is doing so much better.

[Loobiej 1]

Hi All

Thank you for your responses we are thrilled but completley shocked that he diagnosed Friday, when we started the gluten-free diet after a few weeks Jessica was having a really tough time i was calling him and we didnt really get a response, but apparently he was away, as soon as he was back he helped loads and had Jes in for an xray as she had a lot of blood in her stools and from there hes been Fab,im really happy with him.

We had got it into our heads he was going to put her back on wheat to do further testing, and we were ready to fight our corner,but he completley shocked us.

I dont know how i feel if im honest im happy,sad and numb,i think deep down we knew it was celiac but we were hoping it would just be the allergy, I just dont know why i feel so upset.shouldnt i be happy?

I think it doesnt help that as a child my mum was diagnosed with celiac but they didnt diagnose till late and she was very ill with it, it terrifies me.

we are seeing the dietician again on Thursday now shes been diagnosed, what should we expect? last time we went she just gave us details on foods etc.

Thanks

xx

[ravenwoodglass 1,346]

I think it doesnt help that as a child my mum was diagnosed with celiac but they didnt diagnose till late and she was very ill with it, it terrifies me.

I know it's scarey when our children are ill but now that she has been diagnosed and will be on the diet her problems should go away and she will avoid many more down the road. Do make sure that the rest of the family is at least tested and sometimes making the whole home gluten free can be helpful.

Sometimes the hardest part is getting the diagnosis, for some of us it takes years, but getting used to the lifestyle can be difficult also. You will get through it and do ask any questions you need to and feel free to vent if needed.

[salexander421 22]

So glad you have a great doctor! And so glad your daughter is doing good too! Have you posted about him on the doctors thread/forum? This might help others in your area who are in need of a good doctor. Also, I'm sure you've thought about this already but have you done any testing for yourself? If your mom and daughter both have celiac there's a chance you could have it too.

[Loobiej 1]

Hi, no we havent thought much about is been tested yet, we only found out a few days ago about Jessica.

Its been going for a few years our first visit to the Drs about it was April 2009, but our GP didnt refer us to the consultant until September 2010 but from there its gone pretty quick.

I have a little boy who is four he does go to the toilet quite regular but he doesnt have any other symptons at the moment, would myself and him get tested by blood test?

My mum also has Chrones disease which worrys me, she was diagnosed with this 10 years after coeliac.

I will put details of my doctor in the forum no problem xx

[mushroom 1,209]

The one thing you should not do is compare what happened to your poor mother with what Jessica's life is going to be. She is one of the lucky ones, and having her diagnosed early will help her avoid all the repercussions of undiagnosed celiac that your mother suffered through. So long as she remains gluten free she should make a full recovery and lead a totally normal (albeit gluten free) life.

[salexander421 22]

I would definitely consider getting both yourself and your son tested, just ask for a full celiac panel.