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

[GottaSki]

I completely agree. I don't want them to go through what I've been through.

When I was finally diagnosed my boys were teens, their pediatrician ordered celiac panels on them without question. I know a lot more about testing now so I would have pushed for a few more tests...mostly nutrients as both of them had a variety of symptoms that could be associated with celiac disease. They both tested negative, but each went gluten-free when they were ready to see if it would resolve their health issues. One is now diagnosed with Celiac Disease and the other is NCGS (likely celiac based on genes and symptom resolution gluten-free).

No one diagnosed with celiac disease should have to fight for testing. If a doctor refuses, change doctors.

Same goes for your primary. His lack of celiac knowledge is quite common unfortunately, but many doctors are becoming celiac savvy, find one near you. The diagnostic management of celiac disease is quite simple and should be automatic with any other annual tests you require.

Hang in there...many of us become strong advocates because of the general lack of digestive disorder knowledge among our medical professionals.

We are here to help...and cheer you on

[icelandgirl]

When I was finally diagnosed my boys were teens, their pediatrician ordered celiac panels on them without question. I know a lot more about testing now so I would have pushed for a few more tests...mostly nutrients as both of them had a variety of symptoms that could be associated with celiac disease. They both tested negative, but each went gluten-free when they were ready to see if it would resolve their health issues. One is now diagnosed with Celiac Disease and the other is NCGS (likely celiac based on genes and symptom resolution gluten-free).

No one diagnosed with celiac disease should have to fight for testing. If a doctor refuses, change doctors.

Same goes for your primary. His lack of celiac knowledge is quite common unfortunately, but many doctors are becoming celiac savvy, find one near you. The diagnostic management of celiac disease is quite simple and should be automatic with any other annual tests you require.

Hang in there...many of us become strong advocates because of the general lack of digestive disorder knowledge among our medical professionals.

We are here to help...and cheer you on

Lisa...thanks as always for the help and cheering on. It really helps knowing I can come here. I walked out of that office and cried. Could not believe it. What business does he have diagnosing something he has no idea about? Ya know? I'm glad to be going to the GI next week. They say that celiac is one of the diseases they treat...so I'm expecting that he will at least know what I'm talking about.

My kids are due for their well checks next month...interestingly all 3 have their birthdays over a 6 day period...and I will be talking to the pediatrician. I've always loved him as a doctor. I'm hoping that will continue after the appointment. I have a suspicion that one of the boys has it...so much that has gone on with him would make sense if he tests positive. I'm just not sure if my youngest is too young. She'll be 3.

Sorry to go on and on...thanks for listening!

[GottaSki]

Lisa...thanks as always for the help and cheering on. It really helps knowing I can come here. I walked out of that office and cried. Could not believe it. What business does he have diagnosing something he has no idea about? Ya know? I'm glad to be going to the GI next week. They say that celiac is one of the diseases they treat...so I'm expecting that he will at least know what I'm talking about.

My kids are due for their well checks next month...interestingly all 3 have their birthdays over a 6 day period...and I will be talking to the pediatrician. I've always loved him as a doctor. I'm hoping that will continue after the appointment. I have a suspicion that one of the boys has it...so much that has gone on with him would make sense if he tests positive. I'm just not sure if my youngest is too young. She'll be 3.

Sorry to go on and on...thanks for listening!

No apologies needed. I get it.

Hang in there

[GFinDC]

Hi Icelandgirl,

 

The test for Hashimoto's thyroiditis (which leads to hypothyroidism) is a TPO antibodies test.  Hashimoto's is one of the autoimmune conditions associated with celiac disease.

 

Open Original Shared Link

What is a thyroid peroxidase antibody test? Does it diagnose thyroid disease? Answers from Open Original Shared Link

 

Thyroid peroxidase (TPO), an enzyme normally found in the thyroid gland, plays an important role in the production of thyroid hormones. A TPO test detects antibodies against TPO in the blood. If you've been diagnosed with thyroid disease, your doctor may recommend a TPO antibody test — in addition to other thyroid tests — to help determine the cause.

The presence of TPO antibodies in your blood suggests that the cause of thyroid disease is an autoimmune disorder, such as Hashimoto's disease or Graves' disease. In autoimmune disorders, your immune system makes antibodies that mistakenly attack normal tissue. Antibodies that attack the thyroid gland cause inflammation and impaired function of the thyroid.

....

[icelandgirl]

Hi Icelandgirl,

 

The test for Hashimoto's thyroiditis (which leads to hypothyroidism) is a TPO antibodies test.  Hashimoto's is one of the autoimmune conditions associated with celiac disease.

 

Open Original Shared Link

What is a thyroid peroxidase antibody test? Does it diagnose thyroid disease?

Answers from Open Original Shared Link

 

Thyroid peroxidase (TPO), an enzyme normally found in the thyroid gland, plays an important role in the production of thyroid hormones. A TPO test detects antibodies against TPO in the blood. If you've been diagnosed with thyroid disease, your doctor may recommend a TPO antibody test — in addition to other thyroid tests — to help determine the cause.

The presence of TPO antibodies in your blood suggests that the cause of thyroid disease is an autoimmune disorder, such as Hashimoto's disease or Graves' disease. In autoimmune disorders, your immune system makes antibodies that mistakenly attack normal tissue. Antibodies that attack the thyroid gland cause inflammation and impaired function of the thyroid.

....

Yeah...my doctor had never heard of other AI'S being associated with celiac including thyroid. When he called me after talking with a GI he admitted that the GI had confirmed what I said. He told me he learned something from me. Should I ask for my money back? Should he pay me? Lol

[GFinDC]

Yeah...my doctor had never heard of other AI'S being associated with celiac including thyroid. When he called me after talking with a GI he admitted that the GI had confirmed what I said. He told me he learned something from me. Should I ask for my money back? Should he pay me? Lol

 

I don't think your doctor is unusual in being out of the loop on celiac disease.  I doubt he will pay you back but, can't hurt to ask right?    You can find lists of related conditions by searching on "celiac disease related condition" or "celiac disease associated" condition".

 

Celiac disease was considered a rare condition until the last few years.  So lots of doctors are not up to speed on it.

[HavaneseMom]

I think he should definitely pay you for the lesson. At least give you your co-pay back . Just kidding, we know that's not going to happen.

After I saw your posts about getting your kids tested, I remembered something my GI doctor told me right after he gave me my diagnosis.

He told me that all of my first degree relatives should be tested now, and if they come back negative at this time, they should all be tested again every 2 years going forward. I think it will be easy breezy to get your kids test approved. Your GI doctor may even be able to set it up for you.

Good luck!

[icelandgirl]

I think he should definitely pay you for the lesson. At least give you your co-pay back . Just kidding, we know that's not going to happen.

After I saw your posts about getting your kids tested, I remembered something my GI doctor told me right after he gave me my diagnosis.

He told me that all of my first degree relatives should be tested now, and if they come back negative at this time, they should all be tested again every 2 years going forward. I think it will be easy breezy to get your kids test approved. Your GI doctor may even be able to set it up for you.

Good luck!

I'm definitely going to ask the GI. Out of curiosity...how old are your kids and did they test positive?

[HavaneseMom]

I'm definitely going to ask the GI. Out of curiosity...how old are your kids and did they test positive?

Hi Icelandgirl,

I just realized I should have put more thought in to my user name. I just have the two Havanese (that's the name of their breed) dog fur kids you see in my profile picture. I don't have any kids otherwise. Sorry for the confusion!

But as far as testing goes, my mom and my sister have both been tested and their results came back negative. My dad and two other siblings choose not to be tested. I do have a friend at work who's dad has Celiac and three out of the six children in their family have it. I think that is much higher odds than usual in their case. I just did a quick search and read on the University of Chicago site that the rate in first degree relatives for Celiac is 1 in 22.

Here's the link if you are interested:

Open Original Shared Link

[icelandgirl]

Hi Icelandgirl,

I just realized I should have put more thought in to my user name. I just have the two Havanese (that's the name of their breed) dog fur kids you see in my profile picture. I don't have any kids otherwise. Sorry for the confusion!

But as far as testing goes, my mom and my sister have both been tested and their results came back negative. My dad and two other siblings choose not to be tested. I do have a friend at work who's dad has Celiac and three out of the six children in their family have it. I think that is much higher odds than usual in their case. I just did a quick search and read on the University of Chicago site that the rate in first degree relatives for Celiac is 1 in 22.

Here's the link if you are interested:Open Original Shared Link

Sorry to assume...your kids are cuties!

[nvsmom]

It can be a good idea to test the TSH, free T3 and T4 for thyroid issues too. My TPO Ab never tested as abnormal so they won't call it Hashi's, but my thyroid barely works anymore.... Lazy thyroid?  Idon't know.  LOL

 

Congrats on your successful  doctor training.  

[HavaneseMom]

Sorry to assume...your kids are cuties!

Thanks! :-)

[icelandgirl]

It can be a good idea to test the TSH, free T3 and T4 for thyroid issues too. My TPO Ab never tested as abnormal so they won't call it Hashi's, but my thyroid barely works anymore.... Lazy thyroid?  Idon't know.  LOL

 

Congrats on your successful  doctor training.  

Why, thank you! I wish I had told him more of what I've learned but when he told me I needed to stop reading all this stuff I just gave up. Sad...he's been my doctor for 16 years. Hopefully the next time he gets someone in there with celiac he will do things differently.

[IrishHeart]

Why, thank you! I wish I had told him more of what I've learned but when he told me I needed to stop reading all this stuff I just gave up. Sad...he's been my doctor for 16 years. Hopefully the next time he gets someone in there with celiac he will do things differently.

 

If it makes you feel any better, my PCP doctor symptom-treated me for 12 years. When I was deathly ill, he kept trying to help me, sending me to all kinds of specialists. I dropped 90 lbs, lost my hair, cognitive function, developed painful neuropathy & ataxia, anemia and a few dozen other symptoms until finally, I was the one who  figured out that I had celiac. 

 

The story is long, but the point is: when he realized that is what I had, he went pale and was fumbling around and finally said, "I have 3 children with celiac. I just did not know how it manifests in adults."

 

If I had the strength, I may have gotten off the exam table and strangled him to death. Instead, I found a good celiac GI doctor to take over my care.

 

Another celiac told me her husband refused to see the failure to thrive in their son--and he was a leading pediatric gastroenterologsit. Tunrs put both she and the kid had celiac and the husband thought she was just being too worrisome. Yeah, they are divorced.

 

Doctors make mistakes. Doctors did not study celiac in med school. At least your doctor admitted he was not aware enough.

 

Time for you to see a GI with some celiac-savvy. 

 

Be your own best advocate. Get the genetic testing done. It's worth it for bolstering your diagnosis and skipping the biopsy.

I had a biopsy well after the fact because I was too weak and ill at diagnosis. It showed some intestinal scarring and patchy minor villi damage and inflammation--but nothing to worry about.  I was healing and my doctor and I were afraid I had refractory sprue, so we took that as a good sign !

The kicker is: I had negative blood work. I was told I could not possibly have celiac and I was left to suffer for another year .I knew in my heart this thing was the culprit. .So, you see sometimes, there is no "set protocol".

 

P.S. I agree with everything Gemini and Gottaski said, so I will not not say it all over again, I will just say "ditto". 

[computerHack]

You definitely have to be your own champion. I've always had a gluten allergy for which I had to self diagnose.  Once i eliminated wheat/gluten i was fine. Average time to diagnose is about 10 years. That is 10 years of suffering with no answer.  Oddly enough I ended up being cured of my gluten allergy. I've always had a gluten allergy since I was a child in Jamaica. Living in the US now since high school.  Last year I traveled to El Salvador for vacation and somehow picked up a parasite; probably from being bitten by mosquito or tick (babeciosis). After taking 2 doses of the parasite medication the gluten allergy seems to have disappeared.  And this was a gluten allergy that ranged from being unable to focus/concentrate, unable to absorb vitamins, rashes, etc.  Only being 100% gluten free helped me to be functional. Now, it seems like it may have been triggered by something else since the parasite medication made a huge difference. Oh, and it took about 6 months and 2 doctors to find a parasite in my system, even after losing 30 pounds because I kept getting neuropathy when I ate anything. Definitely be your own champion and always get second or third opinion. 

[icelandgirl]

If it makes you feel any better, my PCP doctor symptom-treated me for 12 years. When I was deathly ill, he kept trying to help me, sending me to all kinds of specialists. I dropped 90 lbs, lost my hair, cognitive function, developed painful neuropathy & ataxia, anemia and a few dozen other symptoms until finally, I was the one who  figured out that I had celiac. 

 

The story is long, but the point is: when he realized that is what I had, he went pale and was fumbling around and finally said, "I have 3 children with celiac. I just did not know how it manifests in adults."

 

If I had the strength, I may have gotten off the exam table and strangled him to death. Instead, I found a good celiac GI doctor to take over my care.

 

Another celiac told me her husband refused to see the failure to thrive in their son--and he was a leading pediatric gastroenterologsit. Tunrs put both she and the kid had celiac and the husband thought she was just being too worrisome. Yeah, they are divorced.

 

Doctors make mistakes. Doctors did not study celiac in med school. At least your doctor admitted he was not aware enough.

 

Time for you to see a GI with some celiac-savvy. 

 

Be your own best advocate. Get the genetic testing done. It's worth it for bolstering your diagnosis and skipping the biopsy.

I had a biopsy well after the fact because I was too weak and ill at diagnosis. It showed some intestinal scarring and patchy minor villi damage and inflammation--but nothing to worry about.  I was healing and my doctor and I were afraid I had refractory sprue, so we took that as a good sign !

The kicker is: I had negative blood work. I was told I could not possibly have celiac and I was left to suffer for another year .I knew in my heart this thing was the culprit. .So, you see sometimes, there is no "set protocol".

 

P.S. I agree with everything Gemini and Gottaski said, so I will not not say it all over again, I will just say "ditto". 

Thanks Irish.  When I went through all of the stuff years ago that led to brain surgery I thought I had learned to be my own advocate...but in this situation I completely forgot it.  I have to do that.  Doctors do not know everything and the only person that knows what's going on with me is me.  

 

When I read what others have been through, it makes me cry.  It's so sad that so many people suffer for so long before getting the correct diagnosis.  When I look at my own life and all of the stuff that's happened it's crazy.

 

I'm going forward...fighting for myself.  Thanks again!

[icelandgirl]

Hey all...just a little update...

 

I went to see the GI doc yesterday...he was very nice and very helpful.    I told him my story and ended with so I want to talk to someone who knows something about celiac disease.  He looked at me totally seriously and said, "What's celiac disease?"  And then laughed.    

 

Anyway, it was really nice to talk to him.  He did know lots of stuff.  He said that of course my PCP should have referred me after my bloodwork came back positive and ideally he'd like me to eat gluten for a few weeks and get scoped.  I told him what happens when I get glutened and I wouldn't do that he understood.  He did also mention that I could get scoped anyway to see what kind of damage there was although after 5 months gluten free we couldn't be sure what we would see.  I told him that I've had several surgeries and I really don't want to have to go under again if I don't have to.  So, he asked me if the results of a biopsy would change anything that I'm doing.  And I said no...so there was my answer.  My PCP screwed up...I may never know exactly how bad things were inside.  But I feel better than I did...a lot better.  And I'm not going back.

 

He then had me tested for all of the deficiencies talked about on here, b12, d, etc.  And he knew all of them!  Woo hoo!  He said normally he would refer someone to a nutritionist but he could tell from talking to me that I already knew what I needed to know.  

 

Anyway...I think that's it.  I feel better just having talked to him.

 

[GottaSki]

Hey all...just a little update...

 

I went to see the GI doc yesterday...he was very nice and very helpful.    I told him my story and ended with so I want to talk to someone who knows something about celiac disease.  He looked at me totally seriously and said, "What's celiac disease?"  And then laughed.    

 

Anyway, it was really nice to talk to him.  He did know lots of stuff.  He said that of course my PCP should have referred me after my bloodwork came back positive and ideally he'd like me to eat gluten for a few weeks and get scoped.  I told him what happens when I get glutened and I wouldn't do that he understood.  He did also mention that I could get scoped anyway to see what kind of damage there was although after 5 months gluten free we couldn't be sure what we would see.  I told him that I've had several surgeries and I really don't want to have to go under again if I don't have to.  So, he asked me if the results of a biopsy would change anything that I'm doing.  And I said no...so there was my answer.  My PCP screwed up...I may never know exactly how bad things were inside.  But I feel better than I did...a lot better.  And I'm not going back.

 

He then had me tested for all of the deficiencies talked about on here, b12, d, etc.  And he knew all of them!  Woo hoo!  He said normally he would refer someone to a nutritionist but he could tell from talking to me that I already knew what I needed to know.  

 

Anyway...I think that's it.  I feel better just having talked to him.

That is excellent news. Thanks for the update