In Need Of Some Guidance

[williamp302]

Hello, I will try to be as brief as possible and please excuse me if I go on for to long. I am confused about my diagnosis. For approximately a year now I have had a bloated feeling and a discomfort under my lower right rib cage and it sometimes radiates to my lower right back, no real pain but a constant discomfort. In January I had a upper gastrointestinal endoscopy including the esophagus and stomach and also had a colonoscopy done the same day. When I recieved my results it said I had mild blunting to the villi and the diagnosis is consistant with Celiac Disease (however said I should seek other testing, I thought the colonoscopy tissue test was the best test to diagnose Celiac Disease, the allergist I went to today begs to differ), the doctor that performed the test told me to avoid wheat...Ok, so I have avoided wheat for the past 6 months and I still get the same symptoms. I have never had any stomach pain even when I ate pizza or had a beer but have always had the bloating and mild pain under the rib cage. So today I go see an allergist and he performs a food skin test (many, many small needles in the back area). When he read me the test results he tells me the scale is from 0 to 4 , with 0 being no allergic reaction and 4 being extremely allergic. The result for wheat was 0 so this is where I am confused ?? I had several that were a 2 one of them was Soy and a couple 4's with one of them being orange's. I drink orange juice at least 3 times a week and I am sure I eat food containing Soy..The results for dairy and eggs was also zero and I have read that most Celiacs suffer a dairy allergy also. So he tells me that I need to have a blood test done for Celiac Disease, so I will get that done next week.. So my question is can I still have Celiac Disease and not be allergic to Wheat?? This doesn't make since to me?? He is thinking that because I drink orange juice all the time and eat Soy that this may have caused the symptoms of Celiac Disease..Any help would be GREATLY appreciated. Thanks!!!

[bartfull]

Whew! Where to begin?

OK, there is a big difference between an allergy and an intolerance. Allergies give you histamine reactions - hives, shortness of breath, and they can be fatal. (Think peanut allergy).

An intolerance is the kind of thing that can cause digestive symptoms.

And celiac disease is what causes blunted villi.

It sounds to me like you DO have celiac, but there is a lot more involved than not eating wheat. You can't have rye or barley either, and often celiacs cannot tolerate soy or oats. The dairy thing varies from person to person. There are plenty of us who have no problem at all with dairy.

To become truly gluten-free, you must learn to read labels. As a matter of fact, when you first start out, it is best to go with whole foods only - meat and fresh fruits and veggies. Processed foods can be really tricky. Some may SEEM gluten-free, but if they are made in a facility that processes wheat/rye/barley, they can be cross contaminated.

Also your pots and pans, especially scratched teflon, any cast iron, any wooden utensils, and your toater, all need to be replaced.

There is a thread for newbies that will explain more. It may seem impossible at first, but it can be done, and for your health, it MUST be done.

Now, about the testing. A colonoscopy is for the large intestine. Your villi are in your small intestine. It sounds like they must have done an endoscopy if they found bluted villi.

And it's a shame there are so may clueless doctors out there, but like so many folks, you have one of them. If you have blunted villi, you DO have celiac.

Sorry. It's not the worst diagnosis in the world. Once you get your diet straightened out you will find that you can live a completely normal life, with the possible exception of eating out. Ther ARE some restaurants with gluten-free menus, but the chance of cross contamination is so high, many of us won't take the chance. But we eat before we go, go join our friends and have either a salad, or just a beverage, and our social lives are not affected at all.

So go read the newbie thread, then ask lots of questions. We are here to help and give you support. You came to the right place, so welcome!

[williamp302]

Whew! Where to begin?

OK, there is a big difference between an allergy and an intolerance. Allergies give you histamine reactions - hives, shortness of breath, and they can be fatal. (Think peanut allergy).

An intolerance is the kind of thing that can cause digestive symptoms.

And celiac disease is what causes blunted villi.

It sounds to me like you DO have celiac, but there is a lot more involved than not eating wheat. You can't have rye or barley either, and often celiacs cannot tolerate soy or oats. The dairy thing varies from person to person. There are plenty of us who have no problem at all with dairy.

To become truly gluten-free, you must learn to read labels. As a matter of fact, when you first start out, it is best to go with whole foods only - meat and fresh fruits and veggies. Processed foods can be really tricky. Some may SEEM gluten-free, but if they are made in a facility that processes wheat/rye/barley, they can be cross contaminated.

Also your pots and pans, especially scratched teflon, any cast iron, any wooden utensils, and your toater, all need to be replaced.

There is a thread for newbies that will explain more. It may seem impossible at first, but it can be done, and for your health, it MUST be done.

Now, about the testing. A colonoscopy is for the large intestine. Your villi are in your small intestine. It sounds like they must have done an endoscopy if they found bluted villi.

And it's a shame there are so may clueless doctors out there, but like so many folks, you have one of them. If you have blunted villi, you DO have celiac.

Sorry. It's not the worst diagnosis in the world. Once you get your diet straightened out you will find that you can live a completely normal life, with the possible exception of eating out. Ther ARE some restaurants with gluten-free menus, but the chance of cross contamination is so high, many of us won't take the chance. But we eat before we go, go join our friends and have either a salad, or just a beverage, and our social lives are not affected at all.

So go read the newbie thread, then ask lots of questions. We are here to help and give you support. You came to the right place, so welcome!

Ok it was just confusing when I showed no reaction to wheat..also should I get the blood test to confirm??

[bartfull]

That is a personal choice, but you must be eating gluten for the test to be accurate. If you have been off wheat for the past six months you need to start eating it again for at least 3-6 months before testing. If it were me, I'd skip it and just accept the fact that blunted villi IS a diagnosis. You will find that after you have been gluten-free for a while, your symptoms when eating gluten will most likely be worse than they were before. But if you would feel better getting the other tests, it's up to you.

[IrishHeart]

In January I had a upper gastrointestinal endoscopy including the esophagus and stomach and also had a colonoscopy done the same day. When I recieved my results it said I had mild blunting to the villi and the diagnosis is consistant with Celiac Disease ..... the doctor that performed the test told me to avoid wheat.

So today I go see an allergist and he performs a food skin test

So he tells me that I need to have a blood test done for Celiac Disease, so I will get that done next week.. So my question is can I still have Celiac Disease and not be allergic to Wheat?? T

Oh boy. You need a better GI doctor.

(1) blunting of the villi IS celiac disease. That IS your Diagnosis.

(2) the doctor is an asshat and should have told you more than "avoid wheat", since gluten is also in rye, barley and contaminated oats and other things that are cross-contaminated.

YOU NEED a CELIAC savvy--GI to take care of you! You are going to need follow up care for life.

(3) an allergy is ENORMOUSLY different from celiac disease (it is a misnomer that celiac is a "gluten allergy" -it is an autoimmune disease, not an allergy )

(4) I have celiac and I do not register on any skin prick tests as having a wheat "allergy". These are two different mechanisms.

Please, read about celiac disease so you know what you are dealing with.

I know you still do not feel well, but it could be because you are only avoiding wheat. There is a lot more involved than that, hon.

[williamp302]

Oh boy. You need a better GI doctor.

(1) blunting of the villi IS celiac disease. That IS your Diagnosis.

(2) the doctor is an asshat and should have told you more than "avoid wheat", since gluten is also in rye, barley and contaminated oats and other things that are cross-contaminated.

YOU NEED a CELIAC savvy--GI to take care of you! You are going to need follow up care for life.

(3) an allergy is ENORMOUSLY different from celiac disease (it is a misnomer that celiac is a "gluten allergy" -it is an autoimmune disease, not an allergy )

(4) I have celiac and I do not register on any skin prick tests as having a wheat "allergy". These are two different mechanisms.

Please, read about celiac disease so you know what you are dealing with.

I know you still do not feel well, but it could be because you are only avoiding wheat. There is a lot more involved than that, hon.

Ok, thanks for the advice..another question, if I avoid gluten but every now and then have an orange (one of the foods I showed an allergic reaction to) will that cause the same problems as gluten ? or is that something entirely different and won't cause any serious medical problems the same way gluten would? Thanks

[williamp302]

Oh boy. You need a better GI doctor.

(1) blunting of the villi IS celiac disease. That IS your Diagnosis.

(2) the doctor is an asshat and should have told you more than "avoid wheat", since gluten is also in rye, barley and contaminated oats and other things that are cross-contaminated.

YOU NEED a CELIAC savvy--GI to take care of you! You are going to need follow up care for life.

(3) an allergy is ENORMOUSLY different from celiac disease (it is a misnomer that celiac is a "gluten allergy" -it is an autoimmune disease, not an allergy )

(4) I have celiac and I do not register on any skin prick tests as having a wheat "allergy". These are two different mechanisms.

Please, read about celiac disease so you know what you are dealing with.

I know you still do not feel well, but it could be because you are only avoiding wheat. There is a lot more involved than that, hon.

Trust me , I feel alot better than I did 6 months ago..I weighed 20 pounds less than I do now, wanted to sleep all the time, no energy, and red blood cell count was way down, felt like I was freezing all the time..None of those problems now since going gluten free.

[IrishHeart]

Ok, thanks for the advice..another question, if I avoid gluten but every now and then have an orange (one of the foods I showed an allergic reaction to) will that cause the same problems as gluten ? or is that something entirely different and won't cause any serious medical problems the same way gluten would? Thanks

Allergies are different than celiac, okay.

If you have anaphaylaxis from oranges, then NO, you should not eat them or you will not be able to breathe.