Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter


This topic is now archived and is closed to further replies.


Strating On The Road To Discovery

Recommended Posts

Hi I live in the uk and my dd and I are just imbarking on the road to discovery and i am just so confused.

My DD is 9, and for about three years has suffered terrible stomach pains, and much ill health that the dr has only ever been able to put down to viruses. The last few months though she has got worse. Finally a heap of blood tests were ordered, one of which was for coeliacs disease. When I told my mum what they were testing for she told me that on her side there is a long history of celiac disease, so while I waited for the results of the bloods to come back (takes a week) I decided to go gluten-free...within a few days my dd improved, stomach pain stopped, colour improved and had more energy. But the blood test came back negative, so the next day I let her have wheat bread and within a couple of hours she was crying in pain. I but her back on a gluten-free diet for a week and again no stomach pain. Went back to the doctor after another week of gluten-free and he agreed that it could be an intolerance to gluten. He has told us to stay gluten-free for a month, while he gets in contact with a specialist to see what he has to say, but i am working in the dark as my Dr admited that he has no idea about Coeliacs and gluten-free as he has never had any other patients with it, if after a month she is still doing well he will refer me to a dietician, or depending on what the specialist says will refer me to them.

The thing is there is no way I am letting her have an endiscope Sp? test as she has a fear of dr's (she was abused and was traumatised by a vist to a pead afterwards) So how will I ever really know if i am doing the right thing?

I keep second guessing myself and wondering if I am imagining the improvements? It just doenst seem possible that the improvement could be so quick? and what if its just a coincedence and she gets sick again. She just keeps telling me with a big grin that she feels so much better she dosent care if she cant have real bread again (we both hate the gluten-free bread!)

I am just so confused.

Share this post

Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

You are doing the right thing by omitting gluten from the diet. Even if blood test came back negative - she can still have a gluten intolerance.

Yes you can have dramatic results from omitting gluten.

Think of it this way - all you are doing is changing the type of food she eats - nothing more than that. She responds positively - that's motivation to keep doing it. Your doctor is getting you in touch with a dietician - hopefully one who is knowledgable about gluten.

This site has some wonderful recipes and advice.

remember the naturally gluten free foods



meat - chicken, fish and beef in unprocessed form

dairy - as long as she is not lactose intolerant.

nuts and berries


just to mention a few.

You will know you are doing the right thing when she responds positively to gluten free - It is a healthy diet, but there is huge learning curve - as you gain more experience - you will realize it requires label reading and baking differently than you have before..... but well worth the effort.



Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats



daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

Share this post

Link to post
Share on other sites