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Grrr.. New Doc..

beachymama

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beachymama Newbie
beachymama
Posted

So after ultra drama at my last gastro, I decided to go to my dad's gastro because he's always raving about how awesome he is.

I brought with me my previous blood results (IgA serum 146 and tTG IgA AUTOAb 4)and my regular CBC type blood work from my family doctor. He looked through the blood work and told me it wasn't celiac because the test results were within normal limits, and that I didn't have any other "celiac issues" like anemia or thyroid problems. I'm like uhh, ok. So, I'm still awaiting the results of my haplotyping - but he didn't seem too interested in hearing about that either. :(

So, now I'm being scheduled for a fecal luekacycte (sp) test, a colonoscopy (my dad has colitis) an endoscopy, a lactose breath test (which blows my mind) and something to do with sucrose or fructose or something.

All I want to do is crawl into bed for a few weeks. :(

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beachbirdie Contributor
beachbirdie
Posted

So after ultra drama at my last gastro, I decided to go to my dad's gastro because he's always raving about how awesome he is.

I brought with me my previous blood results (IgA serum 146 and tTG IgA AUTOAb 4)and my regular CBC type blood work from my family doctor. He looked through the blood work and told me it wasn't celiac because the test results were within normal limits, and that I didn't have any other "celiac issues" like anemia or thyroid problems. I'm like uhh, ok. So, I'm still awaiting the results of my haplotyping - but he didn't seem too interested in hearing about that either. :(

So, now I'm being scheduled for a fecal luekacycte (sp) test, a colonoscopy (my dad has colitis) an endoscopy, a lactose breath test (which blows my mind) and something to do with sucrose or fructose or something.

All I want to do is crawl into bed for a few weeks. :(

Well, the doc is right, the two tests you had for celiac don't in any way say celiac. Big problem is (as was said on your other thread) they simply didn't do enough tests. You need:

Deamidated gliadin peptides, both IgA and IgG version

anti-endomysial antibodies (anti-EMA)

and they might, in a pinch, run the TtG IgG

I saw also that your grandfather died of lymphoma. Do you know what type? Lymphoma IS a very possible consequence of untreated celiac.

It will be interesting to see what your gene test says, though genetic testing does not diagnose, it only shows the possibility and level of risk.

beachymama Newbie
beachymama
Posted
  • Author

Well, the doc is right, the two tests you had for celiac don't in any way say celiac. Big problem is (as was said on your other thread) they simply didn't do enough tests. You need:

Deamidated gliadin peptides, both IgA and IgG version

anti-endomysial antibodies (anti-EMA)

and they might, in a pinch, run the TtG IgG

I saw also that your grandfather died of lymphoma. Do you know what type? Lymphoma IS a very possible consequence of untreated celiac.

It will be interesting to see what your gene test says, though genetic testing does not diagnose, it only shows the possibility and level of risk.

Well, the thing is, I've been told our lab doesn't do it that way. Since my IgA was considered "in range" they won't proceed with the other ones because it comes back being all good. My doctor said they look fine.

I got the results of my genetics today:

HLA-DQ2 (DQA1*05/DQB1*02) -- Negative

HLA-DQ8 (DQA1*03/DQB1*0302) -- Positive

HLA Variants Detected:

HLA-DQA1 03

HLA-DQA1 05

HLA-DQB1 0301

HLA-DQB1 0302

I spoke with the doctor (he actually called me on my cell phone) and he said he's not convinced it's celiac and he still wants to do the battery of tests we had talked about. Sadly, my insurance (Tricare -- military) is being a bunch of weenies and won't let them do the colonoscopy and the endoscopy at the same time. The doc thinks the colonoscopy should be done first. So, I'm scheduled for that on July 3rd. He said if I want to try going gluten free and seeing if it helps, that's fine because it won't mess with my colonoscopy. However, I will have to be eating gluten again for the endoscopy... gahhh.

This thing is stressful. I don't know how you pros manage. :)

MitziG Enthusiast
MitziG
Posted

Do NOT go off gluten until the endoscopy! Your doctor is not well informed. INSIST on the endoscopy first. The colonoscopy is likely not even necessary and can NOT reveal celaic.

The last thing you want to do is to go off gluten for awhile, and then have to go back on for an endoscopy. if it is your problem you will get very, very sick from trying to reintroduce it- but that won't be enough to convince the dr. So you will either suffer for months to satisy him- at which point, the endoscopy may still come out negative for a variety of reasons. Or you will give up and quit, and never get a dx. Which is what usually happens.

With negative bloodwork, you probably are NOT celiac. But, gluten intolerance is very likely. My advice, get the endoscopy and go gluten free. If your problems aren't resolved after a few months of strict adherence to the diet- THEN get the other tests. But I doubt you will need them.

MitziG Enthusiast
MitziG
Posted

Also- even if you are only off gluten for a few weeks, in order to get the best chance of a positive biopsy, you will need to go back to eating a LOT of gluten for another 3-4 months before you can have the endoscopy. And if your GI doesn't know this (which it appears he does not) RUN the other way. He is probably going to screw up the endoscopy/biopsy anyway!

ravenwoodglass Mentor
ravenwoodglass
Posted

If possible you really need to get the complete panel. I don't know why your insurance company won't let the doctor do both endo and colonoscopy at the same time as that is a much less expensive way to go. You might want to call the company and question that. You may find it is the doctor that wants to do it that way as there is more money for him when the procedures are done at different times. If that is the case you may want to go to a different doctor. I would also advise you to get the endo first and do stay on gluten until that is done.

You can be celiac even with negative blood work and even with negative endo. Do give the diet a strict try when all celiac related testing is done no matter what the results.

beachymama Newbie
beachymama
Posted
  • Author

Do NOT go off gluten until the endoscopy! Your doctor is not well informed. INSIST on the endoscopy first. The colonoscopy is likely not even necessary and can NOT reveal celaic.

The last thing you want to do is to go off gluten for awhile, and then have to go back on for an endoscopy. if it is your problem you will get very, very sick from trying to reintroduce it- but that won't be enough to convince the dr. So you will either suffer for months to satisy him- at which point, the endoscopy may still come out negative for a variety of reasons. Or you will give up and quit, and never get a dx. Which is what usually happens.

With negative bloodwork, you probably are NOT celiac. But, gluten intolerance is very likely. My advice, get the endoscopy and go gluten free. If your problems aren't resolved after a few months of strict adherence to the diet- THEN get the other tests. But I doubt you will need them.

Well, the reason he wants to do the colonoscopy first is because my dad has ulcerative colitis and he thinks that might be my problem also. He's all about process of elimination, and every doctor I have seen starts with a colonoscopy.

As far as the bloodwork - I don't even know if those results are right. It was part of a panel for my cholesterol and CBC and all that stuff from my regular doctor. I've been on Weight Watchers for a few months and have been avoiding carbs like the plague because their point values are too high. I had no idea I was supposed to be cramming the gluten before that kind of test - so who knows.

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beachymama Newbie
beachymama
Posted
  • Author

Also- even if you are only off gluten for a few weeks, in order to get the best chance of a positive biopsy, you will need to go back to eating a LOT of gluten for another 3-4 months before you can have the endoscopy. And if your GI doesn't know this (which it appears he does not) RUN the other way. He is probably going to screw up the endoscopy/biopsy anyway!

Oh, he knows -- he told me that. Chances are, if I feel better I'm not going to have the endoscopy anyway. I won't need it, and I'm not going to cram gluten if it makes me feel crappy. I feel pretty confident he knows what he's doing, because when he explained the endoscopy to me in the office he said he would be taking at least 10 different samples because areas can be missed.

beachymama Newbie
beachymama
Posted
  • Author

If possible you really need to get the complete panel. I don't know why your insurance company won't let the doctor do both endo and colonoscopy at the same time as that is a much less expensive way to go. You might want to call the company and question that. You may find it is the doctor that wants to do it that way as there is more money for him when the procedures are done at different times. If that is the case you may want to go to a different doctor. I would also advise you to get the endo first and do stay on gluten until that is done.

You can be celiac even with negative blood work and even with negative endo. Do give the diet a strict try when all celiac related testing is done no matter what the results.

No, it's definitely my insurance. The receptionist was baffled, but Tricare wants results from the colonoscopy before they'll approve the endoscopy. I know he'll do them at the same time when allowed, because my dad had the double procedure done by the same doctor and his insurance didn't have an issue with it. I remember him joking "now, don't put the wrong probe in the wrong place" :rolleyes:

I don't necessarily need a little piece of paper proving I'm celiac or gluten sensitive or whatever. I'm just confused by the gene thing that I got back -- I am NOT a science person by any means. I've tried looking it all up, but it just swims in front of my eyes. I don't know whether to have my kids tested or what at this point. I'm more concerned about them than myself! (ah, yes, mommyhood lol)

frieze Community Regular
frieze
Posted

No, it's definitely my insurance. The receptionist was baffled, but Tricare wants results from the colonoscopy before they'll approve the endoscopy. I know he'll do them at the same time when allowed, because my dad had the double procedure done by the same doctor and his insurance didn't have an issue with it. I remember him joking "now, don't put the wrong probe in the wrong place" :rolleyes:

I don't necessarily need a little piece of paper proving I'm celiac or gluten sensitive or whatever. I'm just confused by the gene thing that I got back -- I am NOT a science person by any means. I've tried looking it all up, but it just swims in front of my eyes. I don't know whether to have my kids tested or what at this point. I'm more concerned about them than myself! (ah, yes, mommyhood lol)

perhaps the doc's office didn't word the request quite right?

IrishHeart Veteran
IrishHeart
Posted

I have to respond to the statement that a "negative blood test probably means you do not have celiac."

This is not necessarily true.

The tests can be falsely negative for a variety of reasons.

Mine were, and I have Celiac.

Your genetic test indicates you are positive for the HLA-DQ8 gene which is associated with celiac, but is not a diagnostic tool as many people carry this gene and do not have celiac. But it does give you some info!

If I were you, I'd load up on gluten and insist upon the biopsy first. Then, go gluten-free right after.

A colonoscopy is not used for diagnosis of celiac disease, but he is wise to do all those tests you think are unnecessary but may not be --as those conditions can accompany celiac disease.

He is trying to get to the root of your problem, but sadly, he is going on the assumption you do not have it because the blood work "says so".

Just my thoughts!

beachymama Newbie
beachymama
Posted
  • Author

perhaps the doc's office didn't word the request quite right?

I'm going to call and ask my insurance tomorrow, but it's probably true. Tricare is notorious for being wacky -- yay Army! Hahah.

A colonoscopy is not used for diagnosis of celiac disease, but he is wise to do all those tests you think are unnecessary but may not be --as those conditions can accompany celiac disease.

He is trying to get to the root of your problem, but sadly, he is going on the assumption you do not have it because the blood work "says so".

Just my thoughts!

I hate to sound like one of those people who whines about something and then doesn't take the advice offered to them. However, in this case -- I really think he's looking more at my family history as far as order of testing. I have no family history (at least diagnosed) on either side of celiac, I do however, have a family history of ulcerative colitis and polyps. I just think he's trying to be cautious and take care of something that I may have a higher chance of having. Walks like a duck, talks like a duck and all that.

I'm wondering - does anyone know what the fecal test checks for? Is that celiac related? I haven't heard too much about it. The script says "stool for C&S and fecal leukocytes" -- I didn't rush over to the lab because I remember pooping in the hat when I had an awful stomach flu one year and I'm not jazzed about doing it again.. B)

IrishHeart Veteran
IrishHeart
Posted

However, in this case -- I really think he's looking more at my family history as far as order of testing. I have no family history (at least diagnosed) on either side of celiac, I do however, have a family history of ulcerative colitis and polyps. I just think he's trying to be cautious and take care of something that I may have a higher chance of having. Walks like a duck, talks like a duck and all that.

I'm wondering - does anyone know what the fecal test checks for? Is that celiac related? I haven't heard too much about it. The script says "stool for C&S and fecal leukocytes" -- I didn't rush over to the lab because I remember pooping in the hat when I had an awful stomach flu one year and I'm not jazzed about doing it again.. B)

Hon, I am saying the same thing! He IS wise to look for those other things that "run in the family". My doc tested me for Crohn's, h.pylori, and other AI diseases because they run in the family. I am not saying don't have the tests. On the contrary, I think you SHOULD. :)

But, saying there is "no family history" just does not apply. It just means no one has been DXed YET. SOMEONE has to be first for there to be a family history, right? It may be you.

In my family, it was me, but surely my Dad had it. And my Mom and now, 2 more members of my LARGE extended family have been DXED because I was and I alerted them all to the hereditary nature of this disease. Now, all their "IBS" and GERD and other "bathroom" issues make sense to them. Not that any of them are rushing to get tested. :rolleyes:

As for fecal sample testing, it's not painful or invasive. You do your business and it goes to the lab. No biggie.

Fecal leukocytes show inflammation in the large intestine.

here, read this so you know why he is ordering these tests.

Open Original Shared Link

He is being thorough which is GREAT and a lot more than most of us can say about our (former) GI doctors.

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