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Just Diagnosed And I Do Not Want To Believe It

Liz790

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Liz790 Newbie
Liz790
Posted

So the doctor's just told me that I have celiac sprue and I am having the hardest terms coming to term with it. To me, the whole diagnosis makes no sense. The only reason why I went to a GI specialist was because I would get a pain under my right rib (gallbladder/liver area) every couple of months. The send me to get an endoscopy and blood work done. The only thing that came out positive is the endoscopy (villous atrophy they say). My blood work is fine. Did this happen to anyone else? I thought that if you had celiac disease then you would have multiple symptoms all of the time. I dont get....... Isn't a genetic disease also? Aren't there any other tests that can be done to fully confirm this diagnosis?

I am sorry for my rambling and everything else but it makes not sense to me.

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LDJofDenver Apprentice
LDJofDenver
Posted

Yes it is a genetic disease. Which, by the way, means that if you have it, you got it from either your Mother's side of the family or your Father's. And if you have siblings, they have a chance of having it also. You may want to take a look at the genetic testing side, especially for your other family members.

Not all celiacs have symptoms. While there are a whole host of symptoms, many celiacs are sustaining intestinal damage and are unaware.

Here are links to 2 good articles about genetic testing and celiac disease ("...genetic screening for celiac disease has the amazing potential to reveal whether someone has been misdiagnosed...") :

https://www.celiac.com/articles/834/1/-Your...dams/Page1.html

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

People can have negative blood work and then be diagnosed by small bowel biopsy. It's actually pretty common. In my case, the my blood work was positive for it, and the biopsy just confirmed it.

shendler Rookie
shendler
Posted

I can understand it is hard to accept, but trust me you do not want to have any symptoms to convince you that you are in fact sick. I wish I did not have to suffer for years of misdiagnosis to find out I had celiac. It may not seem like it at the time but you are lucky to find out this way. Living with celiac is a pain in the ass, but you will get adjusted to it with time.

ravenwoodglass Mentor
ravenwoodglass
Posted
I can understand it is hard to accept, but trust me you do not want to have any symptoms to convince you that you are in fact sick. I wish I did not have to suffer for years of misdiagnosis to find out I had celiac. It may not seem like it at the time but you are lucky to find out this way. Living with celiac is a pain in the ass, but you will get adjusted to it with time.

Couldn't have put it better myself. If you read my signature and the signatures of many of the other 'late' diagnosis celiacs you'll soon understand why you should be happy you have been diagnosed before you became severely ill. Celiac can do so really horrible things to a person and 'tummy' issues are just one aspect.

You have found a good place to learn and to go for support. It can be a tough adjustment at first but it gets easier with time.

We are here to help in any way we can. Ask any questions you need to.

no-more-muffins Apprentice
no-more-muffins
Posted

Wow, it is a shock to be diagnosed with something that you probably never suspected. I am actually quite surprised that the doctors were so fast in diagnosing you. Like the others said, you were lucky to be diagnosed so quickly. You can get on top of things before you develop other symptoms and get sicker.

On the other hand, you certainly aren't lucky to have celiac. The crazy thing that I have learned in the short time that I have been researching celiac is that there are actually many, many people who also have it. More than I realized and I am finding out about more people all the time. It seems like everyone knows someone or has a family member with it. I do believe that more and more people are discovering that they have it and hopefully that means that it will get easier to manage. More food options will be available, there will be more awareness and it will seem more "normal".

You have every right to be in shock and to mourn the loss of the things you could eat and now can't. It is such a hard thing at first, especially when you don't feel that sick. You definitely have to make big changes to you life and it totally sucks.

These celiac boards are great. There are so many experienced people here who have lots of tips and answers. And they are always good to listen to a vent or a rant. It is much easier to go through this with other people, even if they are just cyber friends. It makes all this gluten stuff seem a little more normal.

Hang in there and good luck.

Jonbo Apprentice
Jonbo
Posted

It's hard to believe. I didn't want to believe it at first either when I read about it because all I have (had now) is abdominal distention/pain when glutened. Considering I don't have alot of the "classic" symptoms most who have Celiac do, it was a definite surprise. Only took me 5 months to be diagnosed after many attempts to diagnose.

You'll adjust in due time. Just hang in there because it's extremely overwhelming at first. I went into complete meltdown mentally when trying to understand what to avoid. Now though, I'm more educated and usually can tell what ot stay away from. Sometimes it still gets the best of me but I'm learning still and always will be.

Takala Enthusiast
Takala
Posted

Look at the bright side, you've caught it before it did a lot of damage.

If I could give my over age 50 body out as a loaner for other people to borrow for 24 hours to see what it is like, I bet I could have most of the OMG I JUST CAN'T BELIEVE THIS peeps begging for a grocery shopping list. B)

I am self diagnosed (after forcing a neurologist's office to give me test results they were withholding and this doctor lied to me about it, I had "bright spots" or brain plaques that you get with the neuro symptoms like ataxia or dizziness) after the assorted morons in medical land missed the diagnosis for most of my adult life, I was really fortunate that at least the other auto immune thing I have going was somehow accurately diagnosed on the first try when I was in my twenties, because now I know from subsequent visits to the doctors they are completely, totally clueless and would miss that, too, and try to label it "fibro."

And this is the one disease you can nearly get a complete remission out of just by changing what you eat. Compared to so many other diseases, like the ones you have to muck up your immune system with by taking immuno suppressants with the bad side effects, it's not that bad.

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Liz790 Newbie
Liz790
Posted
  • Author

Thank you for all of the encouragement. I really needed it. But one question.... What is the best bread to eat?

LDJofDenver Apprentice
LDJofDenver
Posted

That will vary widely, by availability and taste.

I love Udi's Gluten Free Whole Grain Bread-closest thing to "real" bread that I've found so far. It is available in mainstream grocers (Kroger/King Soopers) and natural grocers here in Colorado -- usually frozen. There are also some really good textured breads in CO from Outside The Breadbox.

My adult son's favorite is Ener-G Foods Corn Loaf - he microwaves it for a couple seconds. He says it has the best flavor and texture.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you for all of the encouragement. I really needed it. But one question.... What is the best bread to eat?

My personal favorite is Kinnickinnick. I like the Italian bread and I also use their pizza crusts and waffles. Gluten Free Pantry makes a French Bread Mix that makes great deep dish pizza crust, I use that if it is more than just me eating pizza that day.

amoliphant Newbie
amoliphant
Posted
That will vary widely, by availability and taste.

I love Udi's Gluten Free Whole Grain Bread-closest thing to "real" bread that I've found so far. It is available in mainstream grocers (Kroger/King Soopers) and natural grocers here in Colorado -- usually frozen. There are also some really good textured breads in CO from Outside The Breadbox.

My adult son's favorite is Ener-G Foods Corn Loaf - he microwaves it for a couple seconds. He says it has the best flavor and texture.

If you have a Whole Foods near you, their "Prairie Bread" is really good...

Mtndog Collaborator
Mtndog
Posted

Although you are NOT lucky to have celiac, you are lucky to get diagnosed before things got much much worse. It is a big adjustment so give yourself sometime to get used to both the idea and the diet.

As far as bread goes, I LOVE Against the Grain baguettes and rolls and all the Whole Foods sandwich breads.

IMO, don't try the EnerG breads- you'll feel like you're eating a sponge.

Another good substitution for bread is rice or teff based "tortillas" and use them as wraps- I get some at Trader Joe's and others at Whole Foods.

gfwb Newbie
gfwb
Posted

I was diagnosed a couple of years ago, and just recently started with the pain in the liver/gallbladder area. If your pain persists on the gluten-free diet, let your doctor know. There is a lot of correlation between liver disease and celiac. I wasn't aware of it until just recently when my liver enzyme panel came back high and I started doing the research. (There is a lot of info on both Wikipedia and the Mayo Clinic website.) I plan to share the info with my doctor so that she can put the liver data in context.

  • 1 month later...
Cyndi Newbie
Cyndi
Posted
So the doctor's just told me that I have celiac sprue and I am having the hardest terms coming to term with it. To me, the whole diagnosis makes no sense. The only reason why I went to a GI specialist was because I would get a pain under my right rib (gallbladder/liver area) every couple of months. The send me to get an endoscopy and blood work done. The only thing that came out positive is the endoscopy (villous atrophy they say). My blood work is fine. Did this happen to anyone else? I thought that if you had celiac disease then you would have multiple symptoms all of the time. I dont get....... Isn't a genetic disease also? Aren't there any other tests that can be done to fully confirm this diagnosis?

I am sorry for my rambling and everything else but it makes not sense to me.

I was told 2 days ago that I had gluten disease by the biopsy of my small instestine but no blood work back yet so I'm not sure where to go from here or if and when to start the Glutin free diet. But my stomach hurts everytime I eat and in bathroom with in 1 to 2 hours. They say I'll probably need more blood test done and from what I've read shouldn't go off gluten until all test are done. This comes after being diagnosed with Lupus last year.

ang1e0251 Contributor
ang1e0251
Posted

Call your dr and tell them you want the blood test immediately. You don't even need to see the dr for a blood draw. Then go on the gluten-free diet immediately. You can't sit around sick while your dr's maybe decide to draw blood or maybe do nothing.

Gemini Experienced
Gemini
Posted
I was told 2 days ago that I had gluten disease by the biopsy of my small instestine but no blood work back yet so I'm not sure where to go from here or if and when to start the Glutin free diet. But my stomach hurts everytime I eat and in bathroom with in 1 to 2 hours. They say I'll probably need more blood test done and from what I've read shouldn't go off gluten until all test are done. This comes after being diagnosed with Lupus last year.

Why any doctor would need the blood work as follow-up when you have had a positive biopsy is beyond me! Either one on their own, if positive, is a diagnosis, period. Go gluten-free and don't look back.

BTW....lupus is one of the autoimmune diseases strongly associated with Celiac. Many people here are diagnosed first with other autoimmune diseases and then later with Celiac. You may notice a lessening of symptoms of the lupus once you go gluten-free and heal. Good luck and hope you feel better soon!

ravenwoodglass Mentor
ravenwoodglass
Posted
I was told 2 days ago that I had gluten disease by the biopsy of my small instestine but no blood work back yet so I'm not sure where to go from here or if and when to start the Glutin free diet. But my stomach hurts everytime I eat and in bathroom with in 1 to 2 hours. They say I'll probably need more blood test done and from what I've read shouldn't go off gluten until all test are done. This comes after being diagnosed with Lupus last year.

If you had a positive biopsy you are diagnosed by what they call the 'Gold Standard'. The doctors may not feel there is any need for blood work. Call your doctors office and ask to speak to the doctor or a nurse. They can call in the order for the blood work or you can pick it up if they feel it is needed.

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