refusing EGD/biopsy

[emma6]

hi my name is emma,

just wondering has anyone else opted out of the EGD/biopsy?

i have multiple reason why i have decided not to (hypoglycemia, heart problems, anxiety)

my only celiac symptom is malabsorption of iron which is improving so to me it seems extreme and the benefits don't out way the risks

my doctors and GI are making me feel like i'm crazy for not wanting it.

they won't listen to me, answer my questions or consider further blood tests. they are all adamant
that i HAVE to have an EGD because the blood tests are all unreliable but from what i have researched they all
 have above a 90% accuracy and the biopsy is also somewhat unreliable too which they never mentioned lol.

is there some kind of treatment they will give you if you were to have intestinal damage?
or is the only result of proving you have damage to eat gluten free (which i already am)

does anyone know other reasons my blood tests could be positive if there is a chance i don't have celiac disease

and is there any way of ruling out other things that could possibly cause a false positive test?

these are my coeliac serology results in Australia not sure how they compare to other countries
Deamidated Gliadin IgA    H>250 U/ml (<15)
Deamidated Gliadin IgG    H 36  U/ml (<15)
Tissue Transglutaminase IgA H> 250 U/ml (<15)
Tissue Transglutaminase IgG 2 U/ml (<15)

thank you so much!

[Jmg]

Hi Emma and welcome

I can't say I opted out of the biopsy, I was actually delighted when the GI put me forward for it because I was desperate for answers and the biopsy is considered the gold standard when diagnosing celiac. For your doctors, its the logical next step after positive blood work. However there is a slight risk, the procedure itself can be unpleasant and I understand your reluctance to go through with it.

Ultimately its a decision only you can take. As you say there's no treatment per se other than the gluten-free diet, but if intestinal damage is established this can be tracked over time to measure your response to the diet and may help you in accessing further support services like dieticians. In my case a hiatus hernia was revealed, others on here have found other things, so there may be other benefits for endoscopy than simply confirming the celiac diagnosis.

If you do go ahead you should be consuming gluten. It would be worth telling your doctor that you've been excluding it if you haven't already. 

Incidentally, are you quite sure your only symptom is iron deficiency?  You also mention:

5 hours ago, emma6 said:

i have multiple reason why i have decided not to (hypoglycemia, heart problems, anxiety)

Celiac is linked to hypoglycemia and anxiety, it can also cause chest pains and heart palpitations. I had all of them and they've all improved on the gluten-free diet despite my biopsy failing to show celiac!  There's a scarily long list of potential affects here:

Open Original Shared Link

and some other info that may be of use in this post:

 Whichever decision you take I wish you the best of luck and I'm sure you'll find this site helpful for both info and support. 

Best,

Matt

 

[frieze]

follow the money

[squirmingitch]

You could request an EMA blood test. The EMA is specific to celiac disease & a slam dunk especially when combined with your over the top positives that you've already had. See:

In addition you can request a gene test to see if you have the genetics that predispose one to celiac disease. The genetic test is not really used to dx celiac but rather to rule it out. 

And then there is the 4 out of 5 rule:

Open Original Shared Link

[Gemini]

2 hours ago, frieze said:

follow the money

Yup...this about says it all! 

Emma.....I refused the biopsy and had very elevated blood work also. I nearly choked on my tea when I saw your results because with numbers that high on the partial blood work they did, there is no doubt you have Celiac Disease. Your blood work shows you are reacting to the gluten you were ingesting (DGP) and you would most likely show obvious damage on biopsy as your tTg is very, very high. Those are not false positives. A false positive can occur on the tTg from other autoimmune diseases BUT it usually is a much smaller elevation....like 10-20 points above reference range. It can happen with thyroid disease.  Your numbers are the "Holy Crap, Batman! You have Celiac!" numbers. 

I completely understand why you refused the biopsy. I presented with classic Celiac and had severe iron deficiency, along with many other symptoms so when I received the results of my blood work and failed all tests except the one tTg/IgG, that clinched it for me. It was a light bulb moment. I was also extremely sick at the time of diagnosis, gastro- wise, so the thought of them shoving a tube down my throat to satisfy their little diagnostic criteria was enough to make me even sicker.  The GI profession totally failed me for years so, even to this day, I do not and will not have a GI doctor.  Anything I need testing on with regards to Celiac Disease is done by my PCP or thyroid doc, who was the only one to help me when I got dangerously sick towards the end of the ordeal. Do not ever let a doctor push you into testing you are not comfortable with. Find someone else who will listen to you and not try to make more money off of your illness. Your results are definitive...you have Celiac. If your anemia resolves, then that is additional proof.

In the end, I did not need one.  It has been 11 years gluten-free for me, and my stomach is a calm and happy place now. I am strict with my diet and it is well worth the effort to get the results I have achieved.  One more thing....if the blood results are that unreliable, then why would they do them in the first place?  What a stupid thing to say to someone!

Find other doctors, if you can easily do that. Welcome to the club! 

[Gemini]

11 minutes ago, squirmingitch said:

You could request an EMA blood test. The EMA is specific to celiac disease & a slam dunk especially when combined with your over the top positives that you've already had. See:

In addition you can request a gene test to see if you have the genetics that predispose one to celiac disease. The genetic test is not really used to dx celiac but rather to rule it out. 

And then there is the 4 out of 5 rule:

Open Original Shared Link

Very good advice here........  I was going to suggest the EMA but that is an expensive test because it has to be done by a technician and not a machine.  I guess they figured they would rather make the money themselves from the biopsy......

[squirmingitch]

I also agree with Gemini & all she said. I only have one caveat. Do you have kids? If you don't get an endoscopy these a&&$@!e docs are not going to give you an official dx. IF you have kids, especially young ones still living at home, then you need to get a dx for their sakes. All first degree relatives should be tested every 2 years. Celiac is a genetically predisposed disease. If you have an official dx then it will be MUCH easier to get your kids tested - you won't have to fight so hard for it - and it's really important that IF they present with celiac you get them an official dx for protection in school, college & so forth.

If this is not a concern for you then get on the strict diet starting right now. Read our Newbie 101 in the coping section.

Welcome to the club!

[Irene Joanne]

One thing I do know is that EVERY specialist/Doctor I have seen has questioned my celiac diagnose and only accepted it when I said I had the biopsy.  I've had to see a lot of doctors this past year and every time I'm questioned- I'm glad I can say I had the biopsy so I'm believed and taken seriously.  My celiac blood tests were in the very high numbers too- and I sure didn't want to wait for the biopsy, but I'm thankful I did

[Gemini]

2 minutes ago, Irene Joanne said:

One thing I do know is that EVERY specialist/Doctor I have seen has questioned my celiac diagnose and only accepted it when I said I had the biopsy.  I've had to see a lot of doctors this past year and every time I'm questioned- I'm glad I can say I had the biopsy so I'm believed and taken seriously.  My celiac blood tests were in the very high numbers too- and I sure didn't want to wait for the biopsy, but I'm thankful I did

I think it all depends on where you live.  I live in Boston, Mass. and we have many Celiac specialty research/hospital clinics here.  I have been gluten-free for 11 years and not one doctor I have ever seen since diagnosis ever doubted I had Celiac.  Once they took a look at my blood panel, they agreed there was no doubt.

If a doctor doubts the diagnosis when a person has very high antibody numbers on multiple tests on the screening panel, then they need to find a new doctor. Some doctors are more liability based than common sense based. The biopsy is not so much the Gold Standard any more. It certainly has it's uses, especially when people have ambiguous blood work or there is suspicion of something else. The antibody tests have come a long way and are very reliable.

[Irene Joanne]

I'm from Canada 

[Charli61]

I'm from Canada too, and they suggested the biopsy, but given the high numbers on the blood test they said it really wasn't necessary (also I have DH but that was never 'formally diagnosed' either, but it was seen and noted) The Dr. said the biopsy is the de facto test to confirm Celiac.  So, I didn't have the biopsy.  Question for you all..... Did your Dr.s suggest a yearly scope?  Mine did and I suggested that I had one and sure as heck didn't think I needed another one, much less one a year!

[Irene Joanne]

1 hour ago, Charli61 said:

I'm from Canada too, and they suggested the biopsy, but given the high numbers on the blood test they said it really wasn't necessary (also I have DH but that was never 'formally diagnosed' either, but it was seen and noted) The Dr. said the biopsy is the de facto test to confirm Celiac.  So, I didn't have the biopsy.  Question for you all..... Did your Dr.s suggest a yearly scope?  Mine did and I suggested that I had one and sure as heck didn't think I needed another one, much less one a year!

I'd have a really hard time finding a doctor willing to do another scope. Mostly once diagnosed they don't seem to think it's necessary- at least where I'm from 

[emma6]

17 hours ago, Jmg said:

Hi Emma and welcome

I can't say I opted out of the biopsy, I was actually delighted when the GI put me forward for it because I was desperate for answers and the biopsy is considered the gold standard when diagnosing celiac. For your doctors, its the logical next step after positive blood work. However there is a slight risk, the procedure itself can be unpleasant and I understand your reluctance to go through with it.

Ultimately its a decision only you can take. As you say there's no treatment per se other than the gluten-free diet, but if intestinal damage is established this can be tracked over time to measure your response to the diet and may help you in accessing further support services like dieticians. In my case a hiatus hernia was revealed, others on here have found other things, so there may be other benefits for endoscopy than simply confirming the celiac diagnosis.

If you do go ahead you should be consuming gluten. It would be worth telling your doctor that you've been excluding it if you haven't already. 

Incidentally, are you quite sure your only symptom is iron deficiency?  You also mention:

Celiac is linked to hypoglycemia and anxiety, it can also cause chest pains and heart palpitations. I had all of them and they've all improved on the gluten-free diet despite my biopsy failing to show celiac!  There's a scarily long list of potential affects here:

Open Original Shared Link

and some other info that may be of use in this post:

 Whichever decision you take I wish you the best of luck and I'm sure you'll find this site helpful for both info and support. 

Best,

Matt

 

Thank you so much for the reply and the list! im not at all sure iron deficiency is my only symptom i was already taking iron supplements as i was vegetarian for 4 years so originally it was just blamed on that. i don't have any stomach symptoms but i do have  severe joint pain (elbows and knees) , post-nasal drip/excessive mucus in throat which is being treated as LPR and exfoliative cheilitis with an unknown cause for 8 years.

so far no doctor will even consider these could be related to celiac disease but they can't find anything else wrong with me so i'm still looking for answers

13 hours ago, Gemini said:

Yup...this about says it all! 

Emma.....I refused the biopsy and had very elevated blood work also. I nearly choked on my tea when I saw your results because with numbers that high on the partial blood work they did, there is no doubt you have Celiac Disease. Your blood work shows you are reacting to the gluten you were ingesting (DGP) and you would most likely show obvious damage on biopsy as your tTg is very, very high. Those are not false positives. A false positive can occur on the tTg from other autoimmune diseases BUT it usually is a much smaller elevation....like 10-20 points above reference range. It can happen with thyroid disease.  Your numbers are the "Holy Crap, Batman! You have Celiac!" numbers. 

I completely understand why you refused the biopsy. I presented with classic Celiac and had severe iron deficiency, along with many other symptoms so when I received the results of my blood work and failed all tests except the one tTg/IgG, that clinched it for me. It was a light bulb moment. I was also extremely sick at the time of diagnosis, gastro- wise, so the thought of them shoving a tube down my throat to satisfy their little diagnostic criteria was enough to make me even sicker.  The GI profession totally failed me for years so, even to this day, I do not and will not have a GI doctor.  Anything I need testing on with regards to Celiac Disease is done by my PCP or thyroid doc, who was the only one to help me when I got dangerously sick towards the end of the ordeal. Do not ever let a doctor push you into testing you are not comfortable with. Find someone else who will listen to you and not try to make more money off of your illness. Your results are definitive...you have Celiac. If your anemia resolves, then that is additional proof.

In the end, I did not need one.  It has been 11 years gluten-free for me, and my stomach is a calm and happy place now. I am strict with my diet and it is well worth the effort to get the results I have achieved.  One more thing....if the blood results are that unreliable, then why would they do them in the first place?  What a stupid thing to say to someone!

Find other doctors, if you can easily do that. Welcome to the club! 

that made me laugh! i didn't realize they were so high haha thank you so much that is all really helpful!

i'm assuming since its so high it will take a while to go down i want to take the test again in a few months to see if there is any improvement

 

13 hours ago, squirmingitch said:

I also agree with Gemini & all she said. I only have one caveat. Do you have kids? If you don't get an endoscopy these a&&$@!e docs are not going to give you an official dx. IF you have kids, especially young ones still living at home, then you need to get a dx for their sakes. All first degree relatives should be tested every 2 years. Celiac is a genetically predisposed disease. If you have an official dx then it will be MUCH easier to get your kids tested - you won't have to fight so hard for it - and it's really important that IF they present with celiac you get them an official dx for protection in school, college & so forth.

If this is not a concern for you then get on the strict diet starting right now. Read our Newbie 101 in the coping section.

Welcome to the club!

no i don't have kids i'm only 25 so at least that's one less thing to worry about good to know though!

[emma6]

14 hours ago, squirmingitch said:

You could request an EMA blood test. The EMA is specific to celiac disease & a slam dunk especially when combined with your over the top positives that you've already had. See:

In addition you can request a gene test to see if you have the genetics that predispose one to celiac disease. The genetic test is not really used to dx celiac but rather to rule it out. 

And then there is the 4 out of 5 rule:

Open Original Shared Link

thank you! they refused to give me an EMA test said it would just show the same thing but i did manage to argue my way into getting a HLA test reference i think i will still try to get an EMA test asap since i've only been gluten free for 2 weeks i'm hoping my levels will still be up since it was so high

[Jmg]

1 hour ago, emma6 said:

  i don't have any stomach symptoms but i do have  severe joint pain (elbows and knees) , post-nasal drip/excessive mucus in throat which is being treated as LPR and exfoliative cheilitis with an unknown cause for 8 years.

so far no doctor will even consider these could be related to celiac disease but they can't find anything else wrong with me so i'm still looking for answers  

You get to play celiac bingo now  Just try googling celiac and exfoliative cheilitis and you'll start to find others who were in the same boat.  I was getting joint pains which have now mostly cleared up and I was very prone to excessive mucus. I remember being really embarassed once in a very high level meeting due to my persistent and horribly mucus driven cough...

The really good news is that your only 25 and have found this relatively early. Try noting down how you feel in a diary and you may be surprised to see what improves over time, things you never thought of connecting to diet. I was still discovering symptoms on here a couple of years later that I'd forgotten amidst the major effects. 

You're also clearly a strong person willing to stand up for themselves in the face of opposition from doctors. That's such a good trait to have. Good On ya!!!

 

 

[Gemini]

20 hours ago, Irene Joanne said:

I'm from Canada 

After reading these few posts, I really think it all depends on where you live and the doctors attitude about the whole process. I think a biopsy is not always needed.  It depends on the circumstances and symptoms, etc.  Sometimes it is harder to piece together a proper diagnosis while other times it's so obvious.  Many people now do not even have GI issues, which used to be the hallmark of Celiac. This is why it is so difficult for some.  It would be nice if there was a very definitive test that was either positive or negative, with 100% accuracy!