Jump to content
  • Sign Up

Rate this topic

Recommended Posts

I had my endoscopy this morning. When I woke up my husband was there and I asked the nurse if she could tell me if he saw anything. All she said was, "Nothing too terrible, I think."

So I guess I got my hopes up that maybe, after all, I wouldn't have to go gluten-free.

The GI comes over and tells me that he will know the biopsy results soon but didn't see anything visible. I have pictures and it looked "normal" to me (although I don't know what a normal intestine looks like.)

I ask if this means I still need to start the diet and he says yes, that my blood work was "very positive" and I needed to start the diet.

Wouldn't he be able to see something if there was damage to the villi? Can the biopsy really tell that much more?

This afternoon I've been a wreck. I'm fine for a moment and then I'm not fine. I go to the kitchen, look around, and then cry. I've really been OK until today. I haven't been emotional and I've been able to read about the diet and talk about it without being too upset.

Right now I just want to scream. Then cry. Then scream.

The whole thing just feels so unfair.

Share this post


Link to post
Share on other sites

Hi Katrala,

POSITIVE for celiac via blood testing means you definitely have to avoid gluten for life-long good health.

You probably know this, but regardless of what the biopsy results are, there's no question you need to be gluten-free.

It seems bewildering at first, and you may be scared, mad, sad...a whole slew of emotions. (Many of us who have been very ill and in pain for many years are actually RELIEVED to know what has been causing all the problems, believe it or not!)

But, of course, you have every right to be upset!!

It is a major game-changer....but it is NOT the end of the world, honest!

There are many ways to live happily gluten-free --and as a result, have a HEALTHY life.

I suggest a good book for you to read is The First Year Celiac Disease by Jules Dowler Shepard. (I don't know her or work for the publisher, honest :) I just found it helpful) Gluten free living for Dummies by Danna Korn helped, too.

I also read TONS on the internet--and right here on this wonderful forum-- for 2 years before diagnosis ( that's how I knew what I had) and I have found that the more you understand about it, the less overwhelming it all is.

The people on this forum--those who walk this path every day--are your best sources of information. It is a place of help, encouragement, shopping and cooking ideas and then some! And a place to safely VENT your frustration... and share your healing story, too!

Go ahead and cry. stomp your feet. Scream your bloody head off. be pissed off. :angry: It's okay! I don't blame you one bit...We soooo "get it". You're going to pass through a bunch of emotions...denial,too...and eventually, reach acceptance.

Lean on us....We can help. :)

  • Upvote 2

Share this post


Link to post
Share on other sites

your going to be emotional for awhile. Just accept it ( the emotional part).

Anyway....villa are little hair like thingys in your intestines. Not very visible on a typical scope.

This is a bit interesting without being too technical and incomprehensible. Look around this site at the info for doctors to understand what they see.

http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C04-Biopsy.htm

Good luck! Hang in there! It really gets easier with time and new habits.

  • Upvote 1

Share this post


Link to post
Share on other sites

Hi,

I just wanted to let you know that you are not alone. I've been going through the same emotions as you. My situation is a little different because I was actually relieved to know what was causing all my problems. That doesn't mean that I was happy about a lifestyle change though. I just started eating gluten free within the past month. Before that I didn't even know what gluten was!

You are right...it is unfair, but you have came to the right place. I was so happy to have found this site and forum. There is so much support here and a wealth of information.

Go ahead, scream and cry, you are entitled to do so. Just remember to take it one day at a time. I believe it will get easier. Allow yourself time to digest everything and then I'm sure you will be able to get a better handle on it.

Sending ((HUGS)) your way. Take Care :)

Share this post


Link to post
Share on other sites

It's a grieving process . . . it's very normal to be emotional. My daughter was diagnosed 4 years ago. She didn't understand but I did and like a good mother, I did her grieving for her. I was the one that started crying because she couldn't have McDonald's chicken nuggets anymore.

It does get easier.

Share this post


Link to post
Share on other sites

I was just diagnosed last month. My GI doctor couldn't "see" anything either. My biopsy showed villous atrophy - confirming the diagnosis of celiac. The villi are not visible except by biopsy. I think some damage is so severe it damages more than the villi, and that is what doctors are sometimes able to see.

Share this post


Link to post
Share on other sites

Thanks.

Until today I was feeling very relieved to finally know what was wrong. I thought I was completely prepared and it's the little things that are getting me.

Since my whole family isn't going gluten-free, I don't know how to know that I'm not getting any gluten at all. I'm making myself space in one cabinet and such, but I see so many "what if" scenarios.

And then my mom calls about Easter dinner this Sunday. And I think of the foods that we always eat - foods that I absolutely love. All I can think to do is bring my own stuff.

Share this post


Link to post
Share on other sites

I don't think it would hurt you a great deal to wait until after Easter to start the gluten-free diet. Maybe you can kind of ease into it over Easter though by limiting your gluten consumption, and then go 100% gluten-free after wards. Once you are off gluten for a few weeks though you may develop strong reactions to it, even in small amounts.

In the meantime you could start getting your head around eating gluten-free, and avoiding cross contamination at home. There are lots of recipe ideas in the recipe section here, and meal ideas, breakfast ideas, or snack ideas too. Try a search on snack ideas or Easter candy, Halloween candy or some other and you will find them.

There are also recipes for flourless peanut butter cookies, flourless chocolate cakes and brownies etc. And plenty of bread recipes too.

Remember when you were an infant you ate nothing but mommy milk. And then eventually they (them big people), got you to eat solid food like mushed up carrots and pears. Eww, yummy! :D

But you got used to it and many other things in time. Food has a very emotional component to it but you can learn to eat differently, even when ur just a lil squirt.

A little "wah" every once in a while is ok though. :D Welcome to the site and Happy Easter!

Share this post


Link to post
Share on other sites

Thanks.

Until today I was feeling very relieved to finally know what was wrong. I thought I was completely prepared and it's the little things that are getting me.

Since my whole family isn't going gluten-free, I don't know how to know that I'm not getting any gluten at all. I'm making myself space in one cabinet and such, but I see so many "what if" scenarios.

And then my mom calls about Easter dinner this Sunday. And I think of the foods that we always eat - foods that I absolutely love. All I can think to do is bring my own stuff.

Our house is totally gluten-free. I found cross-contamination too tricky to navigate. But there are ways to co-exist with gluten-eaters. People do it very successfully.Look on the site--or post yourself--for pointers on making your kitchen and cabinets a safe place for you and your "stuff" ;)

My first Thanksgiving gluten-free (also my birthday week) was really hard. I cried for days about having no stuffing, gravy, my traditional birthday apple pie that my Mom makes (which is beyond fantastic--it's my favorite thing in the world)....and then, I got over it. I brought gluten-free stuffing, gravy, rolls and pie from a gluten-free bakery/restaurant near me and my sister made me a separate turkey. She surprised me with a gluten-free Bday cake. (I was accidentally glutened anyway but she meant well and I love that my family tried...) :lol:

It's a little hard at first, hon....but you will adapt and with the right support, you'll be an old pro at it. Be kind to yourself. You get to mourn it for a while..then, wipe your tears and live your healthy life!! :)

Share this post


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
0

×