Newby Help

[nadinejane]

Hello all,

I'm a newby to this so hopefully I'm in the right section. 

I have just had my tests done for celiac and they came back negative. I'm now a dead end of what to do so I'm wondering if I should just go gluten free to see how I feel and if it makes me feel better or is there other tests I could do. So really it's just a few questions.

1. If I go gluten free will the effects be instant as in within a few days just so I'm aware?

2. Are there any further tests I should be doing or asking the doctor for? (I've requested he calls me back today before I get fobbed off again)

3. are there any good books I could get in the UK as a intro / beginners to gluten free I know we have websites and things but sometimes prefer to have a book to go from and carry round

I know these questions probably get asked so many times so apologies if I should be in a diff section.

Thanks in advance.

[sheena85]

Hi Nadine,

Sadly I have no advice for you, I came to this website looking for the same answer you have asked.

Hopefully someone will have some useful advice for us, I am also confused on where to go from here.  I had negative blood results come back yesterday for celiac.  I am also in the UK.

Take care.

[Newly Diagnosed]

When you had your tests done were you eating gluten?  If you have been gluten free for any period of time or even cutting back on your gluten intake this would affect your results and give you a false negative.  I believe there is also a celiac gene test, but I am not sure of the details on that.

As to tips for going gluten free I think the newbie section of this website has a lot of good tips.  For me, I had no celiac symptoms except heartburn.  When I went gluten free I actually felt worse for a while as my body adjusted.  Then about a month later I realized my heartburn was much better.  But everyone is different.  I have read some people with different symptoms who noticed improvement after a few days. 

[cyclinglady]

First you need to make sure you had the entire celiac blood panel taken.   Often just a screening test is given (TTG IGA and IGA deficiency that catches most but not all celiacs (like me).   These are the tests:

Open Original Shared Link

If you have been on a gluten free diet then the tests will be inaccurate.  

 

It takes most Celiacs to feel better in a few weeks, months or years!  It all depends on the amount of intestinal damage.  If celiac disease is ruled out, it might not be ruled out for life.  You may have to check again as it can develop at anytime in one's life.   Not much is known about a gluten sensitivity unfortunately!  There are no tests for that.  The genetic test just helps rule out celiac disease as about 35% of the poulation carries the genes but only a few go on to develop celiac disease.  It will not diagnose you.  

 

As far as other tests, a CBC (check for anemia) and a vitamin and minerals test is helpful.  

 

Read the Newbie section under " Coping" for tips and advice.  

 

Do do not give up!  You are your best health advocate.  Research all you can to help your doctors.