Jump to content



Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up

So confused

Rate this topic


Recommended Posts

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???

 

Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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. 

Link to post
Share on other sites

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.

Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-m):




×
×
  • Create New...