Blood Tests Positive For Celiac

[BostonCeliac]

Hello all --

I tested positive for celiac through blood testing last week (going for Endoscopy next week) .. I figured it would be positive. My sister was diagnosed 2 years ago, and I was supposed to get tested then, but never did.

I have had unexplained anemia for about 6 years, no amount of iron, steak, leafy greens, etc would get my iron levels to rise (hence the suspicion of celiac)... But what's strange is with-in the last few months I have been having all of the lovely stomach problems associated with celiac disease, which is what lead me to get tested.

Is there still a chance I don't have celiac? Or due to my family history, anemia, stomach issues - do you think it's a done deal? I went gluten free for a couple of weeks and thought I felt better, wasn't sure if it was all in my head though -- have been back on gluten for a while so testing would be accurate -- and sometimes I feel OK, other times I feel terrible...

I guess I'll have to wait and see but I'm somewhat nervous & thought I would get some outside opinions. If I do have celiac - I bet I'll feel awesome when I go gluten-free! So that's good, but i will definitely miss pizza, beer, cereal, bagels, pasta, & PASTRY!!

Thanks!!! I'll keep you posted.

[penguin]

Welcome!

I'd say it's a done deal. Your bloodwork is positive, you have celiac. Look forward to feeling awesome!

There are some great replacement foods out there, others on here will chime in I imagine, and I'd also ask your sister how she copes.

[queenofhearts]

I'm betting you have it. The diagnosis is such a mixed blessing, isn't it? The diet seems so daunting, & it really is at first, but after just a month I'm finding it easier. And the blessing part-- all those symptoms have a simple explanation, you have a great prognosis for feeling better, & you don't need any scary meds or operations or any of that-- just a dietary change that would probably be better for you in any case.

And I will tell you, this board is such a fantastic resource. Nothing else compares.

Welcome!

Leah

p.s. Though you wouldn't know it from the storebought selections, pastry is one of the easiest things to make delicious yet gluten free. (Not so much of a rising issue.) If you bake, look for Annalise Roberts cookbook, or Bette Hagman's The Gluten Free Gourmet Makes Dessert.

[floridanative]

Welcome to the club. I'd bet the house that you have Celiac disease. I'm sorry but the sooner you get dx'd and go gluten free, the sooner your new healthier life begins. This board will be a great source of help for you. Six months into the diet/lifestyle and I still need help to know what products are good/bad and what tests and supplements are important to get and stay healthy. So far none of my 7 doctors (that led me to finally get dx'd) can hold a candle to those on this board who have a wealth of knowledge and are willing to share with others. It's a huge blessing to anyone looking for answers. I had unexplained amemia too and I could not believe everything that was related to me eating gluten that went away after a few months on the diet. Form skin/hair issues to fatique....the list goes on and on. It's truly amazing that something as simple as giving up gluten can improve your health that much is such a short period. Five + months in and I've never felt better as an adult! Good luck to you!

[AndreaB]

Welcome!

After you get the scope done get ready to go gluten-free. It's really not that bad. I second the opinion on getting Annalise Roberts Gluten Free Baking Classics. You will learn everything you wanted to learn on this board and then some.

[BostonCeliac]

Thank you all for your responses!

I've pretty much already accepted the fact that the endoscopy will come back as positive for celiac.. now I just have to wait & continue eating normal (with stomach pain, etc) until that point.

My sister has begun "showing me the celiac ropes" and letting me know which products are good, & which to avoid... I do love to cook & bake - which I think will be the easiest part of the diet.. Eating out must be a challenge, I assume you can only eat so much steak & grilled chicken with potatoes or rice!

I will be sure to make this site a part of my day (while procrastinating at work) and get some good tips --

Thanks for the baking book suggestion "QueenofHearts" - will head out to grab it this weekend!

Will let you all know the inevitable when it happens!

[Guest nini]

your blood work was positive so you DO have Celiac, there is still a chance that your biopsy could miss damage, so don't be disturbed IF your biopsy comes back negative. More than likely it will be positive, but keep in mind the biopsy can only confirm the dx if positive, it can never ever ever rule it out. Don't believe the Dr.s if they try to tell you otherwise. Be prepared as soon as you get home from your scope to go ahead and go gluten-free...

welcome to the club! we are a fun bunch and we can help you find just about any food or personal care product that your little heart desires!

my advice would be to start stocking up on some safe foods now while you are still eating gluten, so that when you get home from the scope you won't be starving and frustrated because you have nothing to eat.

[penguin]

I second Nini about the biopsy. My gastro said I have to be gluten-free no matter what, even if they miss the damage (if there is any) during the endo. Your small intestine is 22 ft long, and the scope only goes in 5 ft. Sure, most damage is in/near the duodenum, but not all.

I'd start experimental baking and cooking gluten-free while you're still eating gluten. Since I'm on a challenge for an endo, I'm much braver in trying to bake/cook new gluten-free things. For some reason, having the alternative of going out and getting the glutened version gives me strength, and I've been successful. Even if you're the best baker/cook in the world, you'll have some hiccups. Don't let yourself have the hubris to think you know what you're doing, because it's a whole new world! It took me a long time to get over myself and start experimenting. The failures hurt both the ego and the pocketbook

[mollyp]

I second Nini about the biopsy. My gastro said I have to be gluten-free no matter what, even if they miss the damage (if there is any) during the endo. Your small intestine is 22 ft long, and the scope only goes in 5 ft. Sure, most damage is in/near the duodenum, but not all.

I'd start experimental baking and cooking gluten-free while you're still eating gluten. Since I'm on a challenge for an endo, I'm much braver in trying to bake/cook new gluten-free things. For some reason, having the alternative of going out and getting the glutened version gives me strength, and I've been successful. Even if you're the best baker/cook in the world, you'll have some hiccups. Don't let yourself have the hubris to think you know what you're doing, because it's a whole new world! It took me a long time to get over myself and start experimenting. The failures hurt both the ego and the pocketbook

I am new to this disease, can anyone tell me what exactly I can have at Taco Bell? I am having a hard time as I am also a vegetarian. Thanks.

[BostonCeliac]

Funny you mention that MollyP ---

My sister is Celiac + Vegetarian, and it's a little tricky for her, and we were just talking about Taco Bell.

At Taco Bell specifically, you can pretty much only get Pintos & Cheese. I think you can get the sauces too -- but not any of their corn tacos, they're made with gluten (that info was in a book I bought about living with celiac/where to eat).

She likes the Pintos & Cheese though -- she eats lots of beans for protein. She also eats fish which helps & drinks soy milk & eats soy products (gluten-free of course).

[mollyp]

Funny you mention that MollyP ---

My sister is Celiac + Vegetarian, and it's a little tricky for her, and we were just talking about Taco Bell.

At Taco Bell specifically, you can pretty much only get Pintos & Cheese. I think you can get the sauces too -- but not any of their corn tacos, they're made with gluten (that info was in a book I bought about living with celiac/where to eat).

She likes the Pintos & Cheese though -- she eats lots of beans for protein. She also eats fish which helps & drinks soy milk & eats soy products (gluten-free of course).

Thanks for the reply, sorry I didn't read it sooner. I had a Nacho Bellgrande today. I read online that it was safe. I thought all corn tortilla products would be safe, guess not.

[CarlaB]

Thanks for the reply, sorry I didn't read it sooner. I had a Nacho Bellgrande today. I read online that it was safe. I thought all corn tortilla products would be safe, guess not.

I believe their taco shells are okay, I know they add wheat the meat though. I have heard others eat the tostadas made with beans, or the pintos and cheese. I don't know about the nacho chips.

[mollyp]

Thanks for the help, I feel fine after eating at Taco Bell, but I don't usually get an immediate reaction when I eat gluten. I have anemia and thyroid disease, I usually don't have any stomach problems.

What about cereal? I have read so many conflicting things, my doctor said to eat Rice Krispies, but I have read that they are not safe? Does anyone know what cereals are safe?

[rinne]

Welcome.

I don't think regular Rice Krispies are O.K. but I just purchased a box of Nature's Path Organic Crispy Rice and they are gluten free.

[BostonCeliac]

No Regular Rice Krispies are NOT OK -- same with Corn Pops -- I just finished a box of the Natures Path Organic Krispy Rice and it was really good! Almost better than the original. The Nature's Path Corn Flakes (gluten-free of course) are also pretty good!

[mollyp]

That is good to know, I love cereal. I can hopefully find these at Whole Foods?

[dionnek]

If your dr. told you to eat Rice Krispies, I think you need a new dr!

Fruity Pebbles and Cocoa Pebbles are ok, and supposedly there is a new Dora cereal that is ok, but the rest are "specialty" cereals that you have to find in the specialty sections of the grocery store or at Whole Foods, etc. (at least down here anyway). The Natures Path Honeyed Corn Flakes are pretty good, and some oft he Envirokidz cereals are ok. I haven't tried any others. Whatch out for barely or malt in things - that's what's in Rice Krispies that will get you!