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My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

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#1 icelandgirl

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Posted 11 June 2014 - 07:39 AM

Let me start off by saying thank you to anyone who reads this whole thing...cause it's going to be long.  And if no one reads it, maybe it will help me to type it.  Because right now I'm angry,sad, frustrated and confused!!!  :angry:  <_<  :(

 

In January, after months of all day diarrhea, headaches, brain fog, pain, I went to see my GP and he had the results of my bloodwork.  He said you've tested positive for H. Pylori and Celiac disease.  I hugged him.  There was an answer to it!  I was so weak and tired (the D was 10-20 times a day) I didn't ask questions.  He said stop eating gluten and I did.  The week before I'd found out that there were polyps all over my gallbladder and that it would need to come out and the week before that there were polyps on my uterus that needed to be removed.  

 

I really didn't know anything about celiac.  I spent 2 weeks detoxing and then had surgery to have my gallbladder removed and my uterine polyps removed.  I recovered from that and then really got into this board and started reading.  I kept seeing things about needing a biopsy...but I didn't have one.  At this point I was more than a month gluten free and was finally feeling better.  I could see improvements in my life and it was such a relief.  I knew I didn't want to ever eat gluten again.

 

Yesterday I had an appointment with my doctor again and had some questions for him.  Why no biopsy?  A lot of people think you need one to have a diagnosis.  His response...you don't need a biopsy.  I asked about re-running my antibodies to see if my 5 months gluten free was paying off.  He said you don't need to do that.  It won't show anything.  What???  I asked about testing my children.  He said you don't normally need to do that until they are at least teenagers.  What?  I've got one teenager so...He tells me he's going to check the guidelines on testing.  He leaves the room.

 

During this time I am freaking out!  WTH!!!  Am I allowed to type that?

 

So...he's gone for a while.  He comes back in and says...well, I'm not sure.  I need to talk to a GI.  Maybe you should have had a biopsy.  

 

I left...devastated.  :(  :(  :(

 

6 PM...my phone rings.  It's my Dr.  He talked to a GI.  He's very sorry.  He learned something today.  He should have had my do a biopsy.  And he learned that there is a link between celiac and thyroid (I've been hypothyroid for 14 years) and some cancers...just like I told him and he dismissed me with a "I've never heard of that."  Now that I've been gluten free for 5 months.  I could eat some gluten for a while and then do the biopsy.  I told him if I get even a tiny bit I will be sick for a week.  Ok, so that's not a good idea.  We can do the gene testing.  But he will need to check to see how much it is before he sends me for that.  Sometimes it's stupid expensive according to him.

 

I'm not eating gluten to do a biopsy.  I'm so confused.  Do I have this thing or not?  Does it matter to have the biopsy or not?

 

I'm looking for another Doctor.  I'd like one who focuses on the whole human being...not just a symptom.  Any thoughts on how to find one of those that takes insurance?

 

Thanks for letting me vent!


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#2 cyclinglady

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Posted 11 June 2014 - 07:56 AM

Well, first talk to the GI. You have the celiac disease positive lab tests and many docs will diagnose based on those results alone. You can go forward and do the biopsy to check for cancer (unlikely) and ascertain damage which is probably still evident even without a gluten challenge. You can ask to have your kids tested by the new doc or find another PCP.

My PCP did not blink an eye when I requested her getting tested. Insurance covered it. But, when I ask him about celiac disease related issues, he has asked me to consult with my GI. I guess he can not be an expert in everything. So, I have learned to champion for myself.

You have every right to be angry!!!
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#3 w8in4dave

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Posted 11 June 2014 - 08:23 AM

I actually give your Dr. some credit for looking into it and telling you he was wrong. I'd go to the GI and talk to him or her. I don't think you have to do a Gluten Challenge. I think they are looking for damage to your small Villi and probably Cancer. So go ahead and see the GI. I would really plead with him to have you children tested. If you talk to him heart to heart and say weather he feels it is a need or not you do and you want it done. I'd also tell him if he insist that they don't need it either he will do it or you'll change Drs. , You'll be surprised! It is hard to find a good Dr. If he is wanting some test and is learning then that is a plus! Or ask him to refer you to a specialist. 


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#4 Gemini

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Posted 11 June 2014 - 08:44 AM

Icelandgirl.....take a deep breath and relax!  Here is what you can also consider......if a person has positive blood work for Celiac Disease, they do not need a biopsy for diagnostic purposes. Forgive me but I cannot remember what tests you had done and how positive they were but you say you had positive blood work and then went gluten free.  This is the route I went because I was deathly ill at diagnosis and couldn't do a biopsy.  I have never doubted my diagnosis but I am also a classic Celiac so it was easier to figure out at that point.

 

You have Celiac if your blood work was positive and you have a very negative reaction to eating gluten. But you do need to have your antibodies re-checked at least once a year, after they reach normal range.  If I were you, I would do this......wait until the 3-6 month mark of being gluten free and have your antibodies re-checked.  If they have come down since the first test, then you are doing well on the diet.  Have gene testing done to see if you carry one or more of the main Celiac genes.  You do know this is not a diagnosis but will bolster the original diagnosis for those pesky doctors. You have had a positive dietary response to going gluten free and that wouldn't happen with any other disease except Celiac.  And....as cyclinglady advised, you could have the biopsy to see how well you are healing.  Please do not worry about cancer.  This always infuriates me.

Some doctors like to work on fear and in truth, ending up with Celiac related cancer is rare.  Yes, it can happen but it is rare.  Remember...did I mention that it is rare?  :)

 

Many, many people, including myself, were diagnosed via blood work and we definitely have full blown Celiac.  The biopsy is overrated and most GI docs will emphatically claim you need one for a diagnosis because they make lots of money off of them. If it makes you feel better and calmer checking your insides out at this point, by all means go ahead and do so.  But you have been gluten-free so please, please, please do not let them tell you that you don't have it if it comes back negative. You had your gall bladder out and have thyroid disease (so do I) and these go hand in hand with Celiac.  Look at the whole picture.

 

Now, go eat a gluten free cookie and feel better.  Do not doubt yourself and let us know what you decide!  :)  And yes, get your kids tested (blood work) every couple of years...no matter what the doc says.


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#5 Tabclear

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Posted 11 June 2014 - 08:58 AM

Icelandgirl.....take a deep breath and relax!  Here is what you can also consider......if a person has positive blood work for Celiac Disease, they do not need a biopsy for diagnostic purposes. Forgive me but I cannot remember what tests you had done and how positive they were but you say you had positive blood work and then went gluten free.  This is the route I went because I was deathly ill at diagnosis and couldn't do a biopsy.  I have never doubted my diagnosis but I am also a classic Celiac so it was easier to figure out at that point.

 

You have Celiac if your blood work was positive and you have a very negative reaction to eating gluten. But you do need to have your antibodies re-checked at least once a year, after they reach normal range.  If I were you, I would do this......wait until the 3-6 month mark of being gluten free and have your antibodies re-checked.  If they have come down since the first test, then you are doing well on the diet.  Have gene testing done to see if you carry one or more of the main Celiac genes.  You do know this is not a diagnosis but will bolster the original diagnosis for those pesky doctors. You have had a positive dietary response to going gluten free and that wouldn't happen with any other disease except Celiac.  And....as cyclinglady advised, you could have the biopsy to see how well you are healing.  Please do not worry about cancer.  This always infuriates me.

Some doctors like to work on fear and in truth, ending up with Celiac related cancer is rare.  Yes, it can happen but it is rare.  Remember...did I mention that it is rare?  :)

 

Many, many people, including myself, were diagnosed via blood work and we definitely have full blown Celiac.  The biopsy is overrated and most GI docs will emphatically claim you need one for a diagnosis because they make lots of money off of them. If it makes you feel better and calmer checking your insides out at this point, by all means go ahead and do so.  But you have been gluten-free so please, please, please do not let them tell you that you don't have it if it comes back negative. You had your gall bladder out and have thyroid disease (so do I) and these go hand in hand with Celiac.  Look at the whole picture.

 

Now, go eat a gluten free cookie and feel better.  Do not doubt yourself and let us know what you decide!  :)  And yes, get your kids tested (blood work) every couple of years...no matter what the doc says.

 

Really? From what I understood from my (admittedly limited research) and from speaking to several gastroenterologists and dieticians, the biopsy is still the gold standard. The blood results can have false positives, as well negative results when in fact the patient has Coeliac disease. Also aren't there numerous other conditions that can cause the same markers in the blood as celiac disease? There are also certain blood test for celiac disease that aren't recommended becasue they give unreliable results if you have an IgA defficiancy.

 

Admittedly, if you get positive blood work and going gluten free helps, then chances are you have celiac disease, but saying "you do not need a biopsy for diagnostic purposes" is a bit of a dangerous statement isn't?


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#6 NatureChick

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Posted 11 June 2014 - 09:50 AM

Icelandgirl. You are already doing exactly what you need to do - educating yourself so that you can take control of your health! Too many people rely on doctors entirely to tell them what to do, but we can't expect them to know us as well as we know ourselves.

I personally wouldn't do a gluten challenge unless my life depended on it. You already have a positive diagnosis and know what to do. Followup testing can be done at your leisure and could give you peace of mind, but wouldn't change the treatment.

I would make sure your children get tested now, and if your current doctor still refuses to test or to give a referral even after you educate him, then sure, find a better one. Depending on how your health insurance works, you could add a Gastroenterologist in addition to your GP, or you could even make a GI your primary doctor.

Yes, your doctor doesn't have the expertise to deal with all of your needs, but at least he didn't tell you it was all in your head, yell at you, or have you do something that caused more problems.


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#7 Pegleg84

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Posted 11 June 2014 - 10:40 AM

Yes, the blood tests can be unreliable, but its much more likely to be a false negative than a false positive. If it was positive and you feel a lot better not eating gluten, then the likelihood is that you have it. Having a biopsy BEFORE going gluten-free is still recommended, but if you've already been gluten-free for months, and know you're going to be in horrible pain if you have to eat it again, then don't. It's not worth it. You can still get a biopsy done to check for remaining damage and other problems, but don't do a gluten challenge. Not worth the pain.

Get your kids tested. The earlier they know, the better.

If you feel better not eating gluten, then give yourself your own Celiac diagnosis and don't turn back.

 

Feel better and good luck!


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#8 icelandgirl

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Posted 11 June 2014 - 11:07 AM

Well, first talk to the GI. You have the celiac disease positive lab tests and many docs will diagnose based on those results alone. You can go forward and do the biopsy to check for cancer (unlikely) and ascertain damage which is probably still evident even without a gluten challenge. You can ask to have your kids tested by the new doc or find another PCP.

My PCP did not blink an eye when I requested her getting tested. Insurance covered it. But, when I ask him about celiac disease related issues, he has asked me to consult with my GI. I guess he can not be an expert in everything. So, I have learned to champion for myself.

You have every right to be angry!!!

Yeah, I was angry.  Now, I'm just kind of sad.  Disappointed too.

 

I'm still thinking changing Dr's is the way to go.  He wouldn't re-test my antibodies.  I'm wondering about a DO instead of an MD.  It seems like they might be more whole body focused.


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#9 sweetsailing

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Posted 11 June 2014 - 11:11 AM

Hi icelandgirl,

 

I agree you might want to change doctors, however I wanted to provide this link for you.  It is from Mayo Clinic and it's their protocol for follow up post celiac diagnosis.  It confirms what others are telling you here that you should have your antibodies re-tested.  You could share this with your physician.

 

http://www.mayomedic...eliac-treat.pdf


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#10 icelandgirl

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Posted 11 June 2014 - 11:14 AM

Icelandgirl.....take a deep breath and relax!  Here is what you can also consider......if a person has positive blood work for Celiac Disease, they do not need a biopsy for diagnostic purposes. Forgive me but I cannot remember what tests you had done and how positive they were but you say you had positive blood work and then went gluten free.  This is the route I went because I was deathly ill at diagnosis and couldn't do a biopsy.  I have never doubted my diagnosis but I am also a classic Celiac so it was easier to figure out at that point.

 

You have Celiac if your blood work was positive and you have a very negative reaction to eating gluten. But you do need to have your antibodies re-checked at least once a year, after they reach normal range.  If I were you, I would do this......wait until the 3-6 month mark of being gluten free and have your antibodies re-checked.  If they have come down since the first test, then you are doing well on the diet.  Have gene testing done to see if you carry one or more of the main Celiac genes.  You do know this is not a diagnosis but will bolster the original diagnosis for those pesky doctors. You have had a positive dietary response to going gluten free and that wouldn't happen with any other disease except Celiac.  And....as cyclinglady advised, you could have the biopsy to see how well you are healing.  Please do not worry about cancer.  This always infuriates me.

Some doctors like to work on fear and in truth, ending up with Celiac related cancer is rare.  Yes, it can happen but it is rare.  Remember...did I mention that it is rare?  :)

 

Many, many people, including myself, were diagnosed via blood work and we definitely have full blown Celiac.  The biopsy is overrated and most GI docs will emphatically claim you need one for a diagnosis because they make lots of money off of them. If it makes you feel better and calmer checking your insides out at this point, by all means go ahead and do so.  But you have been gluten-free so please, please, please do not let them tell you that you don't have it if it comes back negative. You had your gall bladder out and have thyroid disease (so do I) and these go hand in hand with Celiac.  Look at the whole picture.

 

Now, go eat a gluten free cookie and feel better.  Do not doubt yourself and let us know what you decide!  :)  And yes, get your kids tested (blood work) every couple of years...no matter what the doc says.

Thanks Gemini...I want to hug you.  I'm breathing and relaxing.

 

I'm really bothered that the Dr refused to check my antibodies.  It's been 5 months.  He said there was no reason to...ever.  I've been looking at Dr's...what will my insurance cover, etc.

 

My faith in Dr's is really shaken and it was years ago.  I've had medical issues for so long...so many.  When I was in my 20's I was having repeated numbness on my left side...specifically my arm and leg.  Months and months of this.  Pain, fear, etc.  My GP at the time just didn't want to deal with it.  She told me at one point that I probably had MS or a brain tumor.  Finally she schedules an MRI and what I had was a bleeding lesion on the brain that was causing seizures.  This led to brain surgery.  I left her practice after that.  It just seems like Dr's are fine if you have strep or need medicine...but if something is really wrong...they just don't know.


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You never know how strong you are, until being strong is your only choice.
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#11 icelandgirl

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Posted 11 June 2014 - 11:21 AM

Icelandgirl. You are already doing exactly what you need to do - educating yourself so that you can take control of your health! Too many people rely on doctors entirely to tell them what to do, but we can't expect them to know us as well as we know ourselves.

I personally wouldn't do a gluten challenge unless my life depended on it. You already have a positive diagnosis and know what to do. Followup testing can be done at your leisure and could give you peace of mind, but wouldn't change the treatment.

I would make sure your children get tested now, and if your current doctor still refuses to test or to give a referral even after you educate him, then sure, find a better one. Depending on how your health insurance works, you could add a Gastroenterologist in addition to your GP, or you could even make a GI your primary doctor.

Yes, your doctor doesn't have the expertise to deal with all of your needs, but at least he didn't tell you it was all in your head, yell at you, or have you do something that caused more problems.

You're right...and at least he acknowledged his error.  


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You never know how strong you are, until being strong is your only choice.
Bob Marley

#12 icelandgirl

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Posted 11 June 2014 - 11:21 AM

Hi icelandgirl,

 

I agree you might want to change doctors, however I wanted to provide this link for you.  It is from Mayo Clinic and it's their protocol for follow up post celiac diagnosis.  It confirms what others are telling you here that you should have your antibodies re-tested.  You could share this with your physician.

 

http://www.mayomedic...eliac-treat.pdf

Thank you for that...printed it!


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You never know how strong you are, until being strong is your only choice.
Bob Marley

#13 icelandgirl

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Posted 11 June 2014 - 11:26 AM

Yes, the blood tests can be unreliable, but its much more likely to be a false negative than a false positive. If it was positive and you feel a lot better not eating gluten, then the likelihood is that you have it. Having a biopsy BEFORE going gluten-free is still recommended, but if you've already been gluten-free for months, and know you're going to be in horrible pain if you have to eat it again, then don't. It's not worth it. You can still get a biopsy done to check for remaining damage and other problems, but don't do a gluten challenge. Not worth the pain.

Get your kids tested. The earlier they know, the better.

If you feel better not eating gluten, then give yourself your own Celiac diagnosis and don't turn back.

 

Feel better and good luck!

Thank you...that helps!


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You never know how strong you are, until being strong is your only choice.
Bob Marley

#14 Gemini

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Posted 11 June 2014 - 12:27 PM

Really? From what I understood from my (admittedly limited research) and from speaking to several gastroenterologists and dieticians, the biopsy is still the gold standard. The blood results can have false positives, as well negative results when in fact the patient has Coeliac disease. Also aren't there numerous other conditions that can cause the same markers in the blood as celiac disease? There are also certain blood test for celiac disease that aren't recommended becasue they give unreliable results if you have an IgA defficiancy.

 

Admittedly, if you get positive blood work and going gluten free helps, then chances are you have celiac disease, but saying "you do not need a biopsy for diagnostic purposes" is a bit of a dangerous statement isn't?

Any time you ask a GI doctor, they are going to respond that you need a biopsy for diagnosis.  I think part of it is liability driven and the other part money.  In some circumstances, a person might need to move on to a biopsy if their blood work was inconclusive and came back as a weak positive and then the biopsy can be used as a back up diagnosis, if you are lucky enough that they hit the right spot and find damage.  I believe even a weak positive is indicative of Celiac but as you can see from reading this forum, some folks need more proof to convince them they have it and to stick to a strict gluten-free diet.  I can understand that if they aren't that familiar with the disease or the diagnosis criteria.  It is not always as clear cut as other diseases.

 

As far as I know, there are no other diseases that will elevate blood markers except the tTg. That can be elevated from other autoimmune diseases which are commonly seen with Celiac.  However, the DGP and EMA will only be positive from Celiac Disease. 

 

All of the IgA related testing in a Celiac panel will not be useful if a person has an IgA deficiency.  They could have the IgG related tests done but may choose to have the biopsy if these are elevated because the EMA test is IgA based and that is usually the clincher in a blood panel for Celiac Disease.

 

http://www.curecelia...-ema-blood-test

 

Taking all this into account, I stand behind my sytatement that for many people, a biopsy is not required for diagnosis.  Even Dr. Fasano, one of the leading researchers and Celiac physicians, has stated the same.  Celiac testing is not a one size, fits all kind of thing.  The bottom line for me is that if someone shows clear cut benefits from eating gluten free and regains their health, I stand behind them 100%. That is far better than having a negative biopsy and not going gluten free and becoming sicker and sicker.

I know relatives who had this happen and I am watching them suffer all because they believe a doctor unquestioningly.


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#15 Gemini

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Posted 11 June 2014 - 12:41 PM

Thanks Gemini...I want to hug you.  I'm breathing and relaxing.

 

I'm really bothered that the Dr refused to check my antibodies.  It's been 5 months.  He said there was no reason to...ever.  I've been looking at Dr's...what will my insurance cover, etc.

 

My faith in Dr's is really shaken and it was years ago.  I've had medical issues for so long...so many.  When I was in my 20's I was having repeated numbness on my left side...specifically my arm and leg.  Months and months of this.  Pain, fear, etc.  My GP at the time just didn't want to deal with it.  She told me at one point that I probably had MS or a brain tumor.  Finally she schedules an MRI and what I had was a bleeding lesion on the brain that was causing seizures.  This led to brain surgery.  I left her practice after that.  It just seems like Dr's are fine if you have strep or need medicine...but if something is really wrong...they just don't know.

...and if I were next to you, I would hug you back and give you a cookie!  :D

 

You said it in a nutshell....your doctor doesn't know squat about Celiac and that is far too common, I am afraid.  I was sick for 30 years and ended up down to 94 wobbly pounds and wasting away before I figured it out and requested the blood panel. I had symptoms out the whazoo and every single one of them disappeared over the next 3 years gluten free. As they say, hindsight is 20/20. I still have a lot of trouble trusting doctors and am very cautious about what I let them do or don't do. Yes, that is my problem but when you have been screwed over and nearly died from their mistakes, it shakes you to the core. I understand your feelings totally.

 

I am so sorry you had to endure what you did and then ended up having brain surgery.  Reading all you have written about yourself, I would say you are a screaming Celiac, like the rest of us here.  And yes....it can cause brain lesions, that is well documented. I have always said that unless it can be seen on an x-ray, good luck having many doctors find it.  The doctor gems are the ones who will ask why you are seemingly falling apart with so many problems and look at you as whole body and not treat each organ/body problem separately.

 

Get yourself a new doctor and let us know how it all goes. We are on the same team here and really do care. Do not eat gluten...they can still look at your gut to make sure everything is healing well.


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