Positive celiac screen

[WantsALittle1]

I've just found out, about an hour ago, that I have 4 positive antibody markers for celiac. I don't know how to feel. Mostly just concerned about all the damage that has been done to my body over 34 years of eating a gluten-heavy diet.

I've seen what celiac has done to my Mom. She is very ill because hers went undiagnosed for nearly 60 years and got so bad that her adrenals have started to fail. Now she is so sick she is basically bedridden.

The only reason I got tested is because once she found out she had it (about 6 months ago) she has been bugging me to get tested, and I finally did.

 

[Bevziibubble]

I am so sorry I hope that you can get some help to reverse some of the damage and feel better/ healthier

 

[lusterleaf]

Sorry but now that you know, you can start the path to changing your diet and feeling better. I have an autistic son that I got tested because he was having GI Issues (non verbal so couldn't tell us what was going on) and he tested high for Celiac's disease. Makes sense since it runs in the family (my father in law and husbands grandma have it). It was hard at first to buy everything gluten free but as time goes on you get used to it.

 

[Rainbow82]

I'm sorry this must be difficult for you to take in at the moment. Are you in the uk? My 18 month old had his screen a few months ago and he is so much better now he is gluten free. Have a look at the coeliac uk website. Things are much better than they used to be.

 

[Bella1185]

Agree with PP - options of gluten free are sooooooo much better than they used to be! totally manageable - and as soon as you make the switch you'll quickly start noticing how much better you feel

 

[WantsALittle1]

Thanks everyone

Right now I'm just in a massive panic. I can't find anyone online whose levels are anywhere near as high as mine (off the charts), and it's so odd that I have absolutely no symptoms. I only got tested because my Mom did.

My provider didn't call me back yesterday when she said she would, so I'm left with so many questions and fears. Celiac causes deadly cancers and serious nutrient deficiencies, and I'm scared that I'm very far gone.

 

[Rainbow82]

You should have been tested for deficiencies at the same time as your screen? Are you scheduled for a biopsy? This is what will tell what, if any damage there is. As you have no symptoms it is possible that there is not much damage. I believe that with lots f damage thrill of a particular cancer associated with coeliac disease increases to abut 1% which is still relatively low. Even if there is lots of damage we were told that with switching to a strictly gluten free diet will help to heal some of the damage and as the damage heals the risk of those cancers decreases. Most nutrient deficiencies would cause symptoms and if there isn't any deficiencies it would indicate that the damage isn't too bad. Try to stay away from dr Google.

 

[WantsALittle1]

My deficiencies were minor, I was on the low end of normal for iron, vit D, and B12. What has me very worried is my antibody levels. I couldn't find a single person online who had values as high as mine. Three out of the four antibodies were greater than 2500. One of them was at about 450. Most people, many of them with confirmed flattened villi, were only at about 100 or 150. So I am just very scared by the levels themselves. It could be months until I have the endoscopy, and that's a really long time to wait for answers for me. I have anxiety problems so this is really freaking me out