So confused

[Cyntay40]

I haven’t been diagnosed with anything. They keep testing and finding nothing. So move onto the nxt. I’ve been off work for 4 mths sick. Diarrhea (blood in the beginning). Bloating. Tingling in my feet. Now they are going to test for Celiac. I read not to go gluten free before they test you. I’m so confused and overwhelmed. I have eating issues to begin. And now do I make myself gluten free or do I include my kids.??? My own Toaster???

 

[trents]

4 minutes ago, Cyntay40 said:

I haven’t been diagnosed with anything. They keep testing and finding nothing. So move onto the nxt. I’ve been off work for 4 mths sick. Diarrhea (blood in the beginning). Bloating. Tingling in my feet. Now they are going to test for Celiac. I read not to go gluten free before they test you. I’m so confused and overwhelmed. I have eating issues to begin. And now do I make myself gluten free or do I include my kids.??? My own Toaster???

 

Welcome to the forum!

First, yes, keep consuming gluten until after the testing is done. The first stage is a blood draw checking for celiac antibodies. The physician may want to go to the second stage of testing for confirmation, especially if the results from the blood test are ambiguous. You must be consuming gluten right up to the day for either test, at least the equivalent of one slice of wheat bread.

Second, if it turns out you do have celiac disease, there is a 44% chance your children will develop the disease as well. It may remain latent for years before some stress event, like a viral infection, will turn the genes on such that they will have the active form. But the difficult part is the fact that many people with active celiac disease have very minor symptoms (or maybe none at all) and aren't diagnosed for many years until damage has been done to the body and more dramatic symptoms surface. Ideally, your entire household should commit to gluten free, both for your sake and theirs. But to get everyone to buy into that is another story. 

And yes, you definitely should have your own toaster if others in the house are still toasting wheat bread. Shared cookware and utensils need to be thoroughly cleaned as well as countertops. I would also use a separate cutting board. Make sure you also have your own peanut butter and jelly jars, butter tray, etc. so that others in the house are not leaving crumbs in the food you eat. You don't want to delay healing from cross contamination.

Eating out is going to be a huge challenge and you will need to develop strategies for protecting yourself in those settings.

I know, it feels overwhelming. We've all been there. There is a big learning curve but you and your family will eventually make the adjustments necessary to make it work. 

[GFinDC]

Hi cyntay40,

Don't worry, if you turn out to have celiac disease we are available to help with questions and advice.  There are some things to learn but they are mostly adjustments to the things we eat and how we handle food.  Celiac disease is an AI (auto-immune) condition, which means the bodies' immune system attacks it's own tissues. The immune system is very sensitive and the immune response can go on for weeks to months when triggered.  The trigger for the celiac immune response is wheat, rye and barley, although some of us react to oats also.

Celiac is sometimes a family affair so all family should be tested.  Your doctor can tell you if it is ok to cut down on the amount of gluten you eat each day before testing.  The testing is not accurate if gluten is not being eaten each day before hand.  Not just one day before but 8-12 weeks for the blood antibodies tests an 2 weeks for the endoscopy.

You can ask for a gene test if you like.  Having the genes means you may develop celiac disease but not that you automatically will develop celiac.  In the meantime you may want to stop all dairy for a few months.  Celiac damages the villi lining of the small intestine that helps digest dairy sugar.  A check on your vitamin and mineral levels is another good thing to have done.  The villi damage makes absorption of nutrients (vitamins, minerals, fats, carbs) difficult.  So you may be deficient in some things like vitamin D, B vitamins, copper, magnesium and zinc.