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

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42 replies to this topic

#16 BlessedMommy

 
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Posted 11 June 2014 - 01:15 PM

I'm all for biopsies if a person gets them done before going gluten free or shortly thereafter. But it seems a little odd to me to have a doctor recommend that a person who has clearly positive antibody tests and a positive response to the gluten free diet and knows that they get VERY sick from eating gluten, to go purposefully make themselves sick (and possibly even hospitalized) just to prove a point. 


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


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#17 Tabclear

 
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Posted 11 June 2014 - 02:06 PM

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.

 

Thanks for the link. You clearly know what you are talking about. I will say though that the health service is different here in the UK, the NHS is always trying to save money and not perform unnecessary tests, yet from what I can tell all patients having confirmed blood work are sent for a biopsy. This tells me that it is still regarded as being necessary and not about making money. Might be different in the US, I don't really understand your health service or how your insurance works.

 

It would seem quite a few people on here have had very negative experiences with their celiac disease diagnosis and their doctors. It's distressing to think there are so many doctors that know next to nothing about an extremely prevalent autoimmune disease.

 

I'll stop high-jacking this thread now...


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#18 icelandgirl

 
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Posted 11 June 2014 - 02:15 PM

...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.

Thanks again Gemini. I will not for any reason eat gluten...no worries. I don't want to be sick for a week or more. I'm not doing the biopsy either. And I'm good with that. I've had so many symptoms for so many years...it's incredible when I think over my life. I'm actively looking for another doctor. How do you find one who looks at the person as a whole? I'm not just a symptom but I've been made to feel that way for sure. I was going to ask him to test me for nutritional deficits since so many on here seem to have them but he shut me down so firmly on the antibodies that I just gave up. Then I walked out to my car and cried.
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January 2014-Celiac
August 2014- Hashimoto's



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

#19 icelandgirl

 
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Posted 11 June 2014 - 02:18 PM

I'm all for biopsies if a person gets them done before going gluten free or shortly thereafter. But it seems a little odd to me to have a doctor recommend that a person who has clearly positive antibody tests and a positive response to the gluten free diet and knows that they get VERY sick from eating gluten, to go purposefully make themselves sick (and possibly even hospitalized) just to prove a point.

I thought it was crazy too. And I told him that I would not be doing that for any reason. I've been cross contaminated and been sick for over a week...not going to deliberately ingest poison. But I just found it so upsetting that he could diagnose me yet know nothing. Nothing. Didn't even know about ties between thyroid and celiac. Said...I've never heard of that. So I told him that these are things I've been reading. His response...stop reading.

so...any ideas on how to get a new doctor?
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January 2014-Celiac
August 2014- Hashimoto's



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

#20 BlessedMommy

 
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Posted 11 June 2014 - 02:40 PM

Sounds like a good plan to just switch doctors! I surely know where you're coming from as I would not eat gluten for anybody. I won't make myself ill and hospitalized to fulfill anybody's diagnostic criteria.

 

The great thing about celiac is that the treatment doesn't require your doctor's permission to do.

 

Could you ask around for a friend's recommendation for a good doctor?


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~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 


#21 HavaneseMom

 
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Posted 11 June 2014 - 06:59 PM

Hi Icelandgirl,

So sorry to hear you had such a bad doctors visit.

If it were me, I would ask him to refer you to the GI doctor he called to ask about Celiac Disease. I would go over you original result with the GI specialist and let them know that you are unable to do a gluten challenge for the biopsy, but want to monitor your Celiac anti-bodies and be tested for nutritional deficiencies. I do think it is important for those test to be done and it sounds like it wasn't?

From my experience, the Primary Care Physicians I have seen know little about Celiac and the long term effects it can have on us, and don't take it very seriously. My GI doctor has been watching my bloodwork and has me scheduled for yearly testing. I wasted a lot of time trying to stick with my Primary Care doctor for everything, but after my experience with getting diagnosed I realize that the specialist are there for a reason and I need to use them - even though I am very fearful about seeing new doctors.

If you are looking for a new doctor, try typing the name of your city in the search engine on this site. There might be some threads that come up naming referrals for your area. Also, I waited forever for my doc to refer me to a GI and found out later that my insurance didn't actually require a referral to specialist. You might be able to bypass waiting for a referral if you find a GI you want to see depending on your insurance.
Good luck!
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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#22 icelandgirl

 
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Posted 12 June 2014 - 12:52 PM

Hi Icelandgirl,
So sorry to hear you had such a bad doctors visit.
If it were me, I would ask him to refer you to the GI doctor he called to ask about Celiac Disease. I would go over you original result with the GI specialist and let them know that you are unable to do a gluten challenge for the biopsy, but want to monitor your Celiac anti-bodies and be tested for nutritional deficiencies. I do think it is important for those test to be done and it sounds like it wasn't?
From my experience, the Primary Care Physicians I have seen know little about Celiac and the long term effects it can have on us, and don't take it very seriously. My GI doctor has been watching my bloodwork and has me scheduled for yearly testing. I wasted a lot of time trying to stick with my Primary Care doctor for everything, but after my experience with getting diagnosed I realize that the specialist are there for a reason and I need to use them - even though I am very fearful about seeing new doctors.
If you are looking for a new doctor, try typing the name of your city in the search engine on this site. There might be some threads that come up naming referrals for your area. Also, I waited forever for my doc to refer me to a GI and found out later that my insurance didn't actually require a referral to specialist. You might be able to bypass waiting for a referral if you find a GI you want to see depending on your insurance.
Good luck!

Thanks for your advice Havanesemom...I don't need a referral either. I scheduled an appointment for next week with a GI for a consultation.
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January 2014-Celiac
August 2014- Hashimoto's



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

#23 HavaneseMom

 
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Posted 12 June 2014 - 03:23 PM

Thanks for your advice Havanesemom...I don't need a referral either. I scheduled an appointment for next week with a GI for a consultation.


Great news! Let us know how your appointment goes.
  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#24 beth01

 
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Posted 12 June 2014 - 03:55 PM

I hope you get things figured out with your doctor situation. 

 

About your children, have them tested. Mine are 9 and 11 and when I asked about testing them, my GP that sees us all said it wasn't necessary.  This was after my 11 year old has been to cardiac specialists, had an echocardiogram, EKG, and an ultrasound of her heart because she was having unexplained fainting.  I asked him why all that was necessary but he wouldn't do a simple blood test?  He finally relented.  My son is negative (so far and hopefully stays that way), my daughter on the other hand is a celiac.  It's hereditary and time doesn't make it any better.   So much better to find out sooner rather than later.


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Diagnosed April 7th 2014

#25 icelandgirl

 
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Posted 12 June 2014 - 05:37 PM

I hope you get things figured out with your doctor situation. 
 
About your children, have them tested. Mine are 9 and 11 and when I asked about testing them, my GP that sees us all said it wasn't necessary.  This was after my 11 year old has been to cardiac specialists, had an echocardiogram, EKG, and an ultrasound of her heart because she was having unexplained fainting.  I asked him why all that was necessary but he wouldn't do a simple blood test?  He finally relented.  My son is negative (so far and hopefully stays that way), my daughter on the other hand is a celiac.  It's hereditary and time doesn't make it any better.   So much better to find out sooner rather than later.

I completely agree. I don't want them to go through what I've been through.
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January 2014-Celiac
August 2014- Hashimoto's



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

#26 GottaSki

 
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Posted 13 June 2014 - 02:33 AM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#27 icelandgirl

 
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Posted 13 June 2014 - 06:30 AM

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!
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January 2014-Celiac
August 2014- Hashimoto's



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

#28 GottaSki

 
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Posted 13 June 2014 - 08:10 AM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#29 GFinDC

 
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Posted 13 June 2014 - 09:28 AM

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.

 

http://www.mayoclini...rs/faq-20058114

What is a thyroid peroxidase antibody test? Does it diagnose thyroid disease? Answers from Todd B. Nippoldt, M.D.
 

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.

....


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#30 icelandgirl

 
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Posted 13 June 2014 - 10:15 AM

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.
 
http://www.mayoclini...rs/faq-20058114


What is a thyroid peroxidase antibody test? Does it diagnose thyroid disease?
Answers from Todd B. Nippoldt, M.D.
 
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
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January 2014-Celiac
August 2014- Hashimoto's



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





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