Positive Blood.. Any Need For "official" Diagnosis?

[KB.tpw]

I've had symptoms most of my life. In 2010 I was tested by my GP for only ttg and it came back serum iga 252 and ttg a 3. I was shocked and disappointed that I had no answers.

In February of this year I saw a gastroenterolgist. After repeatedly telling me how unlikely it is that I have celiac and I most likely just have ibs, my results came back-

Serum iga- 289

Endomysial iga titer- 1:80

Gliadin peptide iga- 27

Transglutamin ab iga- 61

He called to tell me these results and was adamant that I have an endoscopy AND colonoscopy. I asked why and he said it was necessary to assess damage and to rule out other problems. I am a stay at home m to 4 kids under 8 years old. I can't exactly check out for a day and I certainly don't want unnecessary medical bills. I told him that if I still have a lot of symptoms after a year gluten-free, I would gladly do the endoscopy. He seemed very annoyed.

I did get my vitamin levels checked and have been on 50k iu of vitamin d/wk and I'm taking a b complex on top of regular multivitamins.

My question- is there any situation that I'm not thinking about now or in the future that would benefit by my having the official diagnosis? I'm not sure if he's going to give it to me or not.. I see him again in a couple of weeks.

[nvsmom]

Welcome to the board.  

 

Do you have the normal reference ranges for those tests?  They can vary. Generally for the DGP IgA and tTG IgA, the upper end of the reference ranges are 20 or 4, and you are way beyond that. With three positive blood tests, it's pretty much a sure thing you have celiac disease, whether the doctor puts his stamp of approval on it or not.

 

To diagnose celiac disease, an endoscopy can be helpful, especially if the blood tests are inconclusive - which yours are not ( IMHO).  I have no idea why he would want to do a colonoscopy...

 

I felt the same as you. I had a couple of positive tests and did not feel there was a need for the endoscopy as I was willing to go gluten-free without it. Like you, I said I would have it done if I did not improve on the gluten-free diet, which I did.

 

If you need some sort of special diet accommodation, that is the only time that you need an official diagnosis. Kids often need that for school but I have no idea where an adult might need that as we can usually feed ourselves... Perhaps in a senior's nursing home you would need accommodations?

 

Some people like to have an endoscopy done in case they do not improve quickly, and then they have a baseline to refer back to.  Not many have more than one endoscopy done though.

 

Some people like to have that further evidence that they have celiac disease, and they find it helps them stay on the gluten-free diet better.

 

You'll just need to make a point of telling future doctors that you have celiac disease, as that can predispose you to other autoimmune diseases like thyroiditis, diabetes, and other health problems.  

 

You may want to have you children checked, and then rechecked every couple of years if they continue to eat gluten, as celiac disease is a genetic disease.  If they have signs of celiac disease and test positive, you should probably make them gluten-free too because as you know, the tests can miss celics.

 

Best wishes with whatever you decide to do.

[KB.tpw]

Thank you for the detailed response!

For the ema titer the ref was <1:10

Gliadin peptide less than 20 is negative

Transglutamin 19 or less

I thought about the nursing home thing; I assumed surely by then they will have better tests available that won't require eating gluten or having a scope.

My 5 year old son had a consult with pedi GI and has a scope scheduled for the 27th. My 8 year old daughter has her consult the next day. I would like to wait a little while for the 3 year old.. And the baby is gluten free with me and still breastfed (10 months old).

I told my regular doctor about it as well as my dentist. It's sad though how many people have no idea what I'm talking about. Especially nurses-- ah if I had a quarter for every time I've heard, "what's a gluten?"

[Fenrir]

The reason they need to do the endoscopy is to rule out Crohn's because Crohn's can also cause increased Celiac antibody levels in people who do not have Celiac. Granted, not all people with Crohn's have elevated celiac antibodies but it can happen and you would probably want to make sure it's not Crohn's there are different treatments for that, though Crohn's can be helped by a gluten-free diet as well.

 

More than likely you have Celiac but you wouldn't want to go on living with crohn's if you are one of the rare individuals that has it with those lab results. Also, depending on age and family history it is a good idea to have the colonoscopy.

 

My mom had colon cancer in here mid 40's so my GI doc said I should have one (I'm 37) because you should have it done 10 years before a first degree relative has had had it.

[Gemini]

The reason they need to do the endoscopy is to rule out Crohn's because Crohn's can also cause increased Celiac antibody levels in people who do not have Celiac. Granted, not all people with Crohn's have elevated celiac antibodies but it can happen and you would probably want to make sure it's not Crohn's there are different treatments for that, though Crohn's can be helped by a gluten-free diet as well.

 

More than likely you have Celiac but you wouldn't want to go on living with crohn's if you are one of the rare individuals that has it with those lab results. Also, depending on age and family history it is a good idea to have the colonoscopy.

 

My mom had colon cancer in here mid 40's so my GI doc said I should have one (I'm 37) because you should have it done 10 years before a first degree relative has had had it.

You do not test for Crohn's Disease via endoscopy...it is a disease of the large intestine. I have also never heard of Crohn's causing elevated Celiac antibody levels and I think I have read more literature on that than most.  I would like to see your references for this because it would be a first for me. Also, colon cancer has nothing to do with Celiac but yes, that would be a good reason to do one.

 

To the OP....positive blood work is a definitive diagnosis for Celiac, especially if you are very symptomatic for Celiac and they resolve on a gluten free diet. The EMA is specific to Celiac Disease only, meaning only Celiac will cause a positive.  There is also gene testing, which can bolster the diagnosis for the doubters.  It is not a diagnosis but with positive blood work, is pretty much a slam dunk.  It's also a lot cheaper than a scope, if insurance is an issue.

 

Doctors usually push for scopings because of the practice of defensive medicine and they make a lot of money from them.  Like NVSmom, I was diagnosed via blood work that was off the charts and I was a poster child for classic Celiac......I weighed 94 pounds at diagnosis.   I was too sick for any scopings and after a year gluten-free, I was a different person and felt pretty good, gut wise, so there was never a need to do one.  It's been 9 years now and I am doing great. Unless there is blood in your stool from stool testing, it is not a pressing need or required for a diagnosis.  If this doctor won't give you one without a scope, he's holding you hostage and it would benefit you to find another doctor but you have Celiac....no doubt.  Welcome to the club! 

 

As an added thought......I have never had any doctor in the past 9 years doubt my diagnosis because I wasn't scoped.  But, then again, I am thin and many still think you have to be thin to be a Celiac. NOT! 

[nvsmom]

The reason they need to do the endoscopy is to rule out Crohn's because Crohn's can also cause increased Celiac antibody levels in people who do not have Celiac. Granted, not all people with Crohn's have elevated celiac antibodies but it can happen and you would probably want to make sure it's not Crohn's there are different treatments for that, though Crohn's can be helped by a gluten-free diet as well.

 

Crohn's can cause elevated tTG IgA but it is usually a very weak positive, and not that common. The tTG IgA is somewhere between 91 and 99% specific to celiac disease, and there are other diseases that can elevate it as well (colitis, thyroiditis, diabetes, liver disease, serious infection) so the chances of crohn's causing a higher tTG IgA is fairly small.

 

With other tests that have an even higher specificity for celiac disease (EMA IgA is 98-99% which is about as good as it can get, and DGP IgA is 93-96% specific to celiac disease), chances are it's celiac disease... and hopefully only celiac disease

 

Doctors usually push for scopings because of the practice of defensive medicine and they make a lot of money from them.  Like NVSmom, I was diagnosed via blood work that was off the charts and I was a poster child for classic Celiac......I weighed 94 pounds at diagnosis.   I was too sick for any scopings and after a year gluten-free, I was a different person and felt pretty good, gut wise, so there was never a need to do one.  It's been 9 years now and I am doing great. Unless there is blood in your stool from stool testing, it is not a pressing need or required for a diagnosis.  If this doctor won't give you one without a scope, he's holding you hostage and it would benefit you to find another doctor but you have Celiac....no doubt.  Welcome to the club! 

 

As an added thought......I have never had any doctor in the past 9 years doubt my diagnosis because I wasn't scoped.  But, then again, I am thin and many still think you have to be thin to be a Celiac. NOT! 

 

I am not a the "usualL celiac and was about 20-30lbs overweight when diagnosed but my numbers were high enough that my doctor didn't push the scope.... Then again, he was a pretty lazy doctor and I've since dumped him..LOL

 

I had a rheumy doubt my diagnosis because I wasn't scoped but I told her I wasn't going to make myself sick again just to satisfy her diagnostic criteria, but in much less blunt wording - my Canadianism was showing.  

[Fenrir]

You do not test for Crohn's Disease via endoscopy...it is a disease of the large intestine. I have also never heard of Crohn's causing elevated Celiac antibody levels and I think I have read more literature on that than most.  I would like to see your references for this because it would be a first for me. Also, colon cancer has nothing to do with Celiac but yes, that would be a good reason to do one.

 

To the OP....positive blood work is a definitive diagnosis for Celiac, especially if you are very symptomatic for Celiac and they resolve on a gluten free diet. The EMA is specific to Celiac Disease only, meaning only Celiac will cause a positive.  There is also gene testing, which can bolster the diagnosis for the doubters.  It is not a diagnosis but with positive blood work, is pretty much a slam dunk.  It's also a lot cheaper than a scope, if insurance is an issue.

 

Doctors usually push for scopings because of the practice of defensive medicine and they make a lot of money from them.  Like NVSmom, I was diagnosed via blood work that was off the charts and I was a poster child for classic Celiac......I weighed 94 pounds at diagnosis.   I was too sick for any scopings and after a year gluten-free, I was a different person and felt pretty good, gut wise, so there was never a need to do one.  It's been 9 years now and I am doing great. Unless there is blood in your stool from stool testing, it is not a pressing need or required for a diagnosis.  If this doctor won't give you one without a scope, he's holding you hostage and it would benefit you to find another doctor but you have Celiac....no doubt.  Welcome to the club! 

 

As an added thought......I have never had any doctor in the past 9 years doubt my diagnosis because I wasn't scoped.  But, then again, I am thin and many still think you have to be thin to be a Celiac. NOT! 

I was referring to the colonoscopy to help DX crohn's. I also mentioned that depend on age the Dr. will recommend it or if you have a family history of colon cancer. Also, I have read a pretty large study on tTG and SOME crohn's patients do have elevated tTGs. It is a small number of people but it may be PART of the reason to do a colonoscopy in the case of GI symptoms.

 

More than likely the colonoscpy is being recommended by GI because of the symptoms, maybe age and maybe if they have a family history. Once again, as I said, more than likely it is celiac but there are many reasons to do a colonoscopy and I think most of the time when the GI i recommending it it is for good reason. Not to mention if you are having a EGD anyway, might as well get them done at the same time and get it over with.

[Not crazy]

Crohns does not just affect the large intestine. It can affect anything from the mouth to the anus and anywhere in between.

[KB.tpw]

So.. my symptoms weren't all that typical.  I did have IBS as a young teen to the point that I began homeschooling, but things have gotten much better over the years in that sense. Instead, I dealt with depression, anxiety, panic attacks, low iron.. I was tested and retested and retested for thyroid.  Finally, when my hair began to fall out, my nails were paper thin, and I went to a surgeon to investigate a swollen lymph node. He said, "Hey.. my wife has celiac disease and I think you do too!" And that was that. I think I'm around 10 weeks gluten-free and emotionally feel a million times better. I would think I would have more GI symptoms if I had Chron's, but I haven't read a ton on it.

 

I'm not eating gluten again for anyone, so I may just have to shop around for doctors until they accept the blood tests. 

[Gemini]

Crohns does not just affect the large intestine. It can affect anything from the mouth to the anus and anywhere in between.

Crohns is tested for by a biopsy of the large intestine.  It mainly affects the large intestine in most people who have it.  I'm sure it can affect other areas of the GI tract....that's a no brainer as it's all connected.  Ditto for Celiac Disease.  But when they are testing for it, they don't biopsy the mouth. 

[Gemini]

So.. my symptoms weren't all that typical.  I did have IBS as a young teen to the point that I began homeschooling, but things have gotten much better over the years in that sense. Instead, I dealt with depression, anxiety, panic attacks, low iron.. I was tested and retested and retested for thyroid.  Finally, when my hair began to fall out, my nails were paper thin, and I went to a surgeon to investigate a swollen lymph node. He said, "Hey.. my wife has celiac disease and I think you do too!" And that was that. I think I'm around 10 weeks gluten-free and emotionally feel a million times better. I would think I would have more GI symptoms if I had Chron's, but I haven't read a ton on it.

 

I'm not eating gluten again for anyone, so I may just have to shop around for doctors until they accept the blood tests. 

You know, KB...I wouldn't worry about it.  Your blood work speaks for itself. You have Celiac and the symptoms you thought were atypical are not.  Many people have panic attacks/depression/anxiety because Celiac affects your brain in a big way.  Seratonin is made in the gut so when you have all that inflammation in your gut, chemical production and everything else nosedives...and so does your mood. Stay strictly gluten free and watch your health improve dramatically! 

[BlessedMommy]

I understand not wanting to ever eat gluten again.

 

I would not do another gluten trial for a million dollars.