I'm Extremely Confused..

[Lizzz88]

I'm really confused and I really hope someone can help me! I had the blood test(Celiac Pannel) done in December to check for Celiac. I tested positive. Then, I had an endoscopy in January. I had a lot of damage to my esophagus and stomach(I have ulcers, acid refulx, hiatal hiernia, etc). My doctor didn't mention the Celiac until I asked and he responded, "you look pretty flattened out in your small intestines." I never got the results back from the biopsie they took to check for Celiac. I called and called and he finally said that the test was inconclusive, so we did a genetic test. I tested negative. So, if I don't have the gene does that mean that I don't have Celiac? I am still really sick! I've been on the diet for 2 months now, so I'm scared to get back on wheat.

Please give me advice! thanks!

[Ursa Major]

It is possible to have celiac disease without having the 'official' celiac disease genes. Scientists are saying that they probably haven't found all the celiac disease genes yet.

If the doctor could see flattened villi with the naked eye, there is no way the biopsy could have been inconclusive. Especially with your positive blood test. Somebody doesn't know what he is talking about.

You have celiac disease. You need to be strict about being on the gluten-free diet. It can take a while before you really start feeling better, so don't give up.

Under NO CIRCUMSTANCES should you go back to eating wheat, rye or barley.

[rez]

Correct me if I'm wrong, but I don't think there is any way that a doctor can see flattened villi with the naked eye. That's impossible since it's microscopic damage that needs to be looked at by a pathologist under a microscope. Postive blood work can mean other conditions, unless your EMA was positive. What test was positive? If it was anything other than the EMA, I would get a second opinion because the other tests can be positive for reasons other than Celiac. My son had his scope and biopsy yesterday. They found gastritis in his stomach which is totally unrelated to Celiac. He could have an entirely different condition, or a condition in addition to Celiac. He had a positive tTG. We're anxiously waiting for results. Have they checked for Crohn's or Inflammatory Bowel Disorder? Good luck.

[rez]

Just re read your post. LOOK DEEPER!! Especially if you're still not feeling well. Have them biopsy for H Pylori, EE, and Crohn's too. My son had two negative H Pylori blood tests, but the doctor said those are very unreliable. Good luck and I feel for you.

[Lizzz88]

Just re read your post. LOOK DEEPER!! Especially if you're still not feeling well. Have them biopsy for H Pylori, EE, and Crohn's too. My son had two negative H Pylori blood tests, but the doctor said those are very unreliable. Good luck and I feel for you.

Whenever they did my scope, I'm scared they didn't take the biopsie of my small intestines to check for celiac. I was out of it, but my mom said when she asked about it the doctor had a strange look on his face and replied, "she looked pretty flattened out." So, I wonder if he was just covering himself by saying that the test was inconclusive. I guess what i'm gonna have to do is slowly put wheat back in my diet and they are going to have to scope me again. I'm just really sick, and I'm sick of being sick. It's almost 3 months now! I had gastristis, ulcers in my stomach, deuodeunem, and esophagus, acid reflux with blood, and a hiatal hiernia. They rechecked me for h pylori by a stool test, which they said was reliable, and it came back negative. I really hope they figure everything out! I've had to change my entire schedule. I had to change to online classes and I quit my job, so it's been really hard. This just makes it harder!

[rez]

I feel so bad for you. I urge you to get a better, more competent doctor. If you had all that damage inside, they need to find a root cause and get you better! That doctor is definitely out of it if he thought he was telling you about your villi from the scope. It's scary. We go to the University of Chicago and see a world known GI. It's amazing when you have a good doctor. We went through some really bad ones. I know it's so hard, but try to stick up for yourself and search for better care. I'll say lots of prayers for you.

[rez]

Forgot to ask, it's really important to find out which blood test was positive. I would only trust the EMA to be 100% Celiac.

[chrissy]

the doc can't tell you anything positive from the scope---he can guess, but the damage is microscopic. i would ask for the actual lab report to hold in your fist and take home. i would ask for copies of your blood results, also.

[jayhawkmom]

I agree. Your GI is nuts. If he is telling you that he saw flattening of the villi with the naked eye, and then said that your results are inconclusive... he's seriously insane, and not a very good doctor.

Have you tried a gluten free diet?? Obviously, you have more going on than "just" Celiac, if you even have Celiac - but a gluten free diet can help alleviate some of the symptoms you are having.

If I were in your shoes, I'd be looking for another GI - and I'd be demanding some answers. Also... when you go to another doctor, take all your medical records from THIS doctor with you, and ask for some clarification.

Best wishes to you!

[wowzer]

You said the blood test was positive for celiac. I would go with that. See if the gluten free diet helps you.

[mamabear]

I'm really confused and I really hope someone can help me! I had the blood test(Celiac Pannel) done in December to check for Celiac. I tested positive. Then, I had an endoscopy in January. I had a lot of damage to my esophagus and stomach(I have ulcers, acid refulx, hiatal hiernia, etc). My doctor didn't mention the Celiac until I asked and he responded, "you look pretty flattened out in your small intestines." I never got the results back from the biopsie they took to check for Celiac. I called and called and he finally said that the test was inconclusive, so we did a genetic test. I tested negative. So, if I don't have the gene does that mean that I don't have Celiac? I am still really sick! I've been on the diet for 2 months now, so I'm scared to get back on wheat.

Please give me advice! thanks!

First I would establish what all was biopsied and what were the results. Ask your internist or FP to get a copy of the pathology and then you can see what was recorded.

Second, gee...I hate to say this, but.....you can see some damage some of the time. It is POSSIBLE to see abnormal areas in the small intestine with the naked eye via the scope or capsule endoscopy, but it takes a very experienced GI to do this. Patchy areas can be visible as well as "scalloping" which has a very distinctive look on the edges of the intestinal folds. There is a wonderful Wikipedia reference to this under celiac disease......pictures,too! Usually the converse is true

that you have to wait on the cytology report, but there are exceptions.

Third, ~5% of celiacs do not have DQ2 or DQ8......so it is possible that you have celiac sprue

and not those genes.

I also would not think going back to gluten makes any sense for you unless you are willing to have further invasive testing with another GI. Do you have a good family doctor to help evaluate all this?

I agree you need to know which blood tests were done, as they are given different levels of importance in predicting celiac disease.....but we celiacs come with all kinds of "pedigrees'....it would be so nice if the researchers could come up with the ONE 99.99999% accurate test!!!!!!!!

[mamabear]

First I would establish what all was biopsied and what were the results. Ask your internist or FP to get a copy of the pathology and then you can see what was recorded.

Second, gee...I hate to say this, but.....you can see some damage some of the time. It is POSSIBLE to see abnormal areas in the small intestine with the naked eye via the scope or capsule endoscopy, but it takes a very experienced GI to do this. Patchy areas can be visible as well as "scalloping" which has a very distinctive look on the edges of the intestinal folds. There is a wonderful Wikipedia reference to this under celiac disease......pictures,too! Usually the converse is true

that you have to wait on the cytology report, but there are exceptions.

Third, ~5% of celiacs do not have DQ2 or DQ8......so it is possible that you have celiac sprue

and not those genes.

I also would not think going back to gluten makes any sense for you unless you are willing to have further invasive testing with another GI. Do you have a good family doctor to help evaluate all this?

I agree you need to know which blood tests were done, as they are given different levels of importance in predicting celiac disease.....but we celiacs come with all kinds of "pedigrees'....it would be so nice if the researchers could come up with the ONE 99.99999% accurate test!!!!!!!!

Sorry...a little more....I did not mean to imply you don't need the biopsy!! You do.....I just mean that abnormalities CAN be visible, but get the tissue for biopsy if you are in the small intestine!!

[Lizzz88]

I agree. Your GI is nuts. If he is telling you that he saw flattening of the villi with the naked eye, and then said that your results are inconclusive... he's seriously insane, and not a very good doctor.

Have you tried a gluten free diet?? Obviously, you have more going on than "just" Celiac, if you even have Celiac - but a gluten free diet can help alleviate some of the symptoms you are having.

If I were in your shoes, I'd be looking for another GI - and I'd be demanding some answers. Also... when you go to another doctor, take all your medical records from THIS doctor with you, and ask for some clarification.

Best wishes to you!

Yeah, I've been on a gluten free diet since the end of December. So, two months now. It seemed to help with the lower gi problems at first, but now it's kind of bad again. I've been really careful because I'm not going back on wheat until they figure things out! I go to this doctor on March 14th and I'm gonna take all my records to another doctor. I might end up having a colonoscopy. Is that a bad test or is it similiar to the endoscopy? Is that how they check for Crohn's?

[2Boys4Me]

Hmm. Ty had an upper endoscopy when he was diagnosed. They checked his esophagus, stomach and duodenum. If they've already biopsied you there, can't they use those samples in addition to your blood test to confirm or deny celiac? The duodenum is the "top" part of the intestines and from what I understand, usually the first section of the intestines to show villi damage.

[rez]

I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone with Celiac have that visible damage? This is all so hard to grasp.

[Lizzz88]

Let's see, well, I just asked my mom what blood test was positive and she said the IgG was. Which when I researched, it said that IgG can just mean that a GI problem exist.

I really think that this doctor either lost or forgot to take that biopsie when he scoped me because I got all the results back except that one(which was the most important!) and then when he finally answered back he just said that it was inconclusive. Does anyone think that I should get in touch with the lab and find out if there ever was a biopsie?

These are my symptoms..if anyone knows what this could be, please tell me because I'm sick of feeling sick and my doctor doesn't seem to know.

-Sharp pain below breast bone(top of stomach)

-Cramping of stomach(middle and lower)

-Still having a lot of acid reflux..I'm on prevacid twice a day and taking Carafate 4 times to coat the ulcers.

-Nausea constantly

[mamabear]

I'm so confused. I was under the impression that they could see abnormalities/scalloping in the folds and mosaic type patterns in the duodenum, but I thought our doctor told us they need to take samples to look at the villi because the damage could be microscopic. If they can diagnose based on what they see, why do they take biopsies at all? Does everyone with Celiac have that visible damage? This is all so hard to grasp.

I've sent you a PM. You are correct in that the inspection through the endoscope may LOOK normal, and be abnormal on biopsy. I was trying to say it IS possible to see the damage. Ultimately, the biopsy results trump the visuals.

[Lizzz88]

I've sent you a PM. You are correct in that the inspection through the endoscope may LOOK normal, and be abnormal on biopsy. I was trying to say it IS possible to see the damage. Ultimately, the biopsy results trump the visuals.

I didn't get a PM..can you resend it? Thank you for your help!

[rez]

Sorry, I think there was a misunderstanding. Ann sent me a PM to explain some things to me. Basically, she explained that they can sometimes see folds or scalloping of the duodenum, but the pathologist looks for the microscopic damage done to the villi. Good luck.