Celiac Diagnosis Today

[purpleorchid620]

Hello,

 

I am 25 years old and I never considered Celiac as the cause of my stomach issues.  I self diagnosed myself with IBS but I always just thought that I has sensitive intestines but never thought of Celiac. My Celiac journey started about a week before this last Christmas. I broke out in this weird rash while on vacation. I didn't think much of it until it wouldn't go away. I have sensitive skin so I just thought it was nothing. Then I notices I was eating more after eating so I saw my doctor and he did some blood test for food allergies. He also screening me for Celiac. All the allergy tests were negative but my tTG was slightly high at a 10. I was so shocked.  I hadn't had any gluten for about a week prior to the test because I was on a diet so they said that it could have been even higher if I had eaten gluten prior to the test. So I was gluten free for 3 weeks and I felt amazing. No stomach pain, no diarrhea, constipation, or nauseousness. I had more energy and my emotional state was better. OK, So I thought I would make it official and see a GI doc for more testing. They told me to go back to a normal diet and scheduled me for a consult and a upper GI scope for the following month (2/28/14). They also had me do more blood work last week and I got those results today. They said my tTG was higher, from 10 to 74, and my Gliadin went from 8 to 19. Has anyone else seen results like this?? They told me that it is positive for Celiac Disease, but they still needed to do the scope for confirmation. They told me that there is no other conditions that cause blood results like this, has anyone had these tests be high and no have Celiac? I noticed that my symptoms were much worse after restarting a normal diet after being off for 3 weeks, is this normal? I need to suffer for another week until my scope then I will go back to Gluten Free. Any advise would be great.... 

 

Thanks

[kareng]

Welcome. If you are eating gluten, you would expect the numbers to go up.

I sent you a message you might want to read.

[bartfull]

My first advice has nothing to do with celiac. You should not use your full name and email address as a screen name! Change it quickly!

 

Then we'll get back to celiac, but yes, it seems you DO have it.

[purpleorchid620]

My first advice has nothing to do with celiac. You should not use your full name and email address as a screen name! Change it quickly!

 

Then we'll get back to celiac, but yes, it seems you DO have it.

Ok, Thanks I will do that. Do you have Celiac? What symptoms have you had?

[bartfull]

Yes, I have celiac. I had digestive issues, and celiac caused my psoriasis. I had brain fog, swelling feet, frequent and painful hiccups, headaches, and a host of other small symptoms that I never would have associated with celiac.

 

The best thing you can do right now is go to the Newbie 101 thread in the coping section. It's a great way to learn about the diesease and the diet. Most doctors tell folks to go gluten-free and send them on their way, but it isn't just about giving up bread and pasta and cookies. Things can be cross-contaminated, and the Newbie thread will teach you how to avoid that.

 

It can seem overwhelming at first, and you will probably go through withdrawal, with headaches and mood swings and constant hunger. But that only lasts about two or three weeks. Then you will start feeling better both mentally and physically. There are PLENTY of good things to eat too, so don't worry. After the Newbie thread, check out the recipe thread and the what's for breakfas/lunch/dinner threads.

 

Oh, and ask as many questions as come to mind. We're glad to help.

[purpleorchid620]

Yes, I have celiac. I had digestive issues, and celiac caused my psoriasis. I had brain fog, swelling feet, frequent and painful hiccups, headaches, and a host of other small symptoms that I never would have associated with celiac.

 

The best thing you can do right now is go to the Newbie 101 thread in the coping section. It's a great way to learn about the diesease and the diet. Most doctors tell folks to go gluten-free and send them on their way, but it isn't just about giving up bread and pasta and cookies. Things can be cross-contaminated, and the Newbie thread will teach you how to avoid that.

 

It can seem overwhelming at first, and you will probably go through withdrawal, with headaches and mood swings and constant hunger. But that only lasts about two or three weeks. Then you will start feeling better both mentally and physically. There are PLENTY of good things to eat too, so don't worry. After the Newbie thread, check out the recipe thread and the what's for breakfas/lunch/dinner threads.

 

Oh, and ask as many questions as come to mind. We're glad to help.

Thanks so much, I will defiantly check those out. How long have you been gluten free?

[GFinDC]

Welcome to the forum Amanda!

 

That sequence of tests is pretty much standard in celiac disease testing.  First they test the blood for anti-bodies to gliaden, and if those are positive they do an endoscopy to look for villi blunting.  Where they did screw up though is telling you to go gluten-free before all the testing was done.  That was bad advice.  If it is celiac disease (and it sure sounds like it is), you can recover and lead a full and happy life.  You do need to learn how to avoid all gluten in your diet.  That includes even tiny amounts you can't see.  The immune system is very sensitive and will react to very small amounts of gluten.  The easiest way to do that for a beginner is to stop eating any processed foods and instead eat whole foods.  That way you don't have to worry about hidden gluten in products and CC.  It's quite a process to for many of us to learn how to do gluten-free safely and avoid random glutenings. It may take 6 months or more to really get it down.

 

By eating mostly whole foods you also avoid lots of chemical preservatives, fillers, food dyes, emulsifiers, sweetners and such that are not necessarily good for you anyway.  You end up eating things like fruit, meats, nuts, veggies mostly.  There are some products with only a few ingredients that are safe.  Like Mission brand corn tortillas.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

****************************************************************************

 

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?
https://www.celiac.com/forums/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?
https://www.celiac.com/forums/topic/75238-what-are-you-cooking-tonight/

Dessert thread
https://www.celiac.com/forums/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399