Biopsy Or Not

[farmer]

Just tested VERY positive for celiac. My brother and sister both have it as well - brother for over 10 years, sister for approximately a year.

The celiac blood panel came back very positive according to my doc. He told me due to the fact that the blood panel was so conclusive, and that it runs in my family, there was no need for further testing (biopsy).

Should I ask for this test anyway?

[Gemini]

  farmer said:

Just tested VERY positive for celiac. My brother and sister both have it as well - brother for over 10 years, sister for approximately a year.

The celiac blood panel came back very positive according to my doc. He told me due to the fact that the blood panel was so conclusive, and that it runs in my family, there was no need for further testing (biopsy).

Should I ask for this test anyway?

If you want to have the test done and see how much damage your gut has, then by all means ask your doctor for the test. I was also diagnosed on blood work alone because I failed every test by very large numbers and I was a poster child in appearance for celiac disease. However, I was so sick at the time and not holding any food down, the thought of a scope being shoved down my throat was not an option so I started the diet and was on the road to recovery. You have the right to ask for an endo if you want one.

[farmer]

  Gemini said:

If you want to have the test done and see how much damage your gut has, then by all means ask your doctor for the test. I was also diagnosed on blood work alone because I failed every test by very large numbers and I was a poster child in appearance for celiac disease. However, I was so sick at the time and not holding any food down, the thought of a scope being shoved down my throat was not an option so I started the diet and was on the road to recovery. You have the right to ask for an endo if you want one.

Don't really want it done, just want to make sure it is not necessary. As I said, between the blood work and family history, my doc didn't see the need, but I don't know what the gastro specialist is going to say. By the way, seeing him was at my request.

Thanks.

[sbj]

  farmer said:

Don't really want it done, just want to make sure it is not necessary. As I said, between the blood work and family history, my doc didn't see the need, but I don't know what the gastro specialist is going to say. By the way, seeing him was at my request.

Thanks.

I think there are two considerations here.

First: you don't need a biopsy to diagnose celiac disease:

"

Biopsy Not Always Necessary for Celiac Disease Diagnosis

Research in the most recent issue of Alimentary Pharmacology & Therapeutics shows that a transglutaminase antibody level can be defined which gives a positive predictive value of 100 percent for celiac disease indicating that small bowel biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels. There is high diagnostic accuracy of immunoglobulin-A-tissue transglutaminase antibodies for detecting celiac disease. Researchers explored whether a small bowel biopsy is always required to establish the diagnosis. ... The researchers observed that all patients with transglutaminase antibody levels over 30 U/mL had characteristic small bowel mucosal lesions."

Second: You might want an endoscopy for baseline comparison, to assess ther state of your bowel, to compare for later follow-up, to look at the esophagus and stomach:

"Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy

[Gemini]

  sbj said:

I think there are two considerations here.

First: you don't need a biopsy to diagnose celiac disease:

"

Biopsy Not Always Necessary for Celiac Disease Diagnosis

Research in the most recent issue of Alimentary Pharmacology & Therapeutics shows that a transglutaminase antibody level can be defined which gives a positive predictive value of 100 percent for celiac disease indicating that small bowel biopsy is no longer regarded as mandatory in patients with such high transglutaminase antibody levels. There is high diagnostic accuracy of immunoglobulin-A-tissue transglutaminase antibodies for detecting celiac disease. Researchers explored whether a small bowel biopsy is always required to establish the diagnosis. ... The researchers observed that all patients with transglutaminase antibody levels over 30 U/mL had characteristic small bowel mucosal lesions."

Second: You might want an endoscopy for baseline comparison, to assess ther state of your bowel, to compare for later follow-up, to look at the esophagus and stomach:

"Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy

[sbj]

  Gemini said:

Age may be a factor for some but I think many who are diagnosed in their 30's and 40's are not to the point where they have to paranoid about cancer. It's a great scare tactic, though, and the medical profession uses it freely.... Where has all the common sense gone?

This really gets my goat! I have Lynch syndrome and the average age that this strikes someone with cancer is 45 years old. 'Common sense' tells me to listen to my doctor and get an annual colonoscopy.

"[After gluten-free diet,] a year later, same patient develops new symptoms of diarrhea, weight loss, whatever. We'll get a duodenal biopsy as part of the workup, but its going to be difficult to interpret without knowing what things were like before going gluten-free.

Specifically, a baseline to look back at tells us whether the small bowel is better, worse or no different, and helps us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities

involving the rest of the gut."

It's up to the poster, for sure. He asked for reasons to do an endoscopy - that's what I've provided. I don't hold out hope, though, as this forum has a decidedly anti-medical profession bent. Best of luck to all who ignore their doctor and instead trust their own instincts.

[lizard00]

Do you already have a scheduled appointment with the GI? Mabe you can call the office and talk to the nurse and get an idea of how the GI feels about it. Or you can discuss it further with the GI at the appointment. My GI did not do an initial biopsy because when he diagnosed me I had been gluten-free for 6 months. He wants to do one maybe this spring, just to make sure everything's good. I'm sure we'll discuss it when I see him again.

SBJ-

I'm not convinced that anyone on here is anti-medical professionals. edit: Skeptical, absolutely. Truly anti... no.

I think that many of us have been disappointed by the doctors we so believed would give us our answers. If I had not trusted my instincts, I would still be eating gluten, getting sicker every day. Sometimes our instincts are better than what a piece of paper says. I stand by the statement that I know my body better than a doctor does.

There are many wonderful doctors out there, but there are also many who are not so good. I've been to two not so good, but now thankfully have 2 fantastic ones. I live in a decent size city where doctors are plentiful and I have great insurance, so if I don't like one, I can try another. Not everyone has those luxuries. I'm happy that you seem to have doctors who haven't disappointed.

[sbj]

  lizard00 said:

I'm not convinced that anyone on here is anti-medical professionals.

[farmer]

Haven't seen the GI yet, not until first week in January (soonest I could get).

However, since my doc said the celiac panel was 'proof positive', along with the fact that 2 members of my immediate family have it, I have been on the gluten free diet for almost 2 weeks. I don't know if the GI is going to want to pursue the biopsy route, but we'll see. My doctor says there is no need.

[Gemini]

  sbj said:

This really gets my goat! I have Lynch syndrome and the average age that this strikes someone with cancer is 45 years old. 'Common sense' tells me to listen to my doctor and get an annual colonoscopy.

"[After gluten-free diet,] a year later, same patient develops new symptoms of diarrhea, weight loss, whatever. We'll get a duodenal biopsy as part of the workup, but its going to be difficult to interpret without knowing what things were like before going gluten-free.

Specifically, a baseline to look back at tells us whether the small bowel is better, worse or no different, and helps us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities

involving the rest of the gut."

It's up to the poster, for sure. He asked for reasons to do an endoscopy - that's what I've provided. I don't hold out hope, though, as this forum has a decidedly anti-medical profession bent. Best of luck to all who ignore their doctor and instead trust their own instincts.

Let me see if I can't make myself clearer for you.....don't want to upset your goat!

My comments were aimed at those individuals who have no pre-existing conditions, other than the Celiac symptoms, which would make cancer more of a risk factor. This is what I mean by using your common sense. Farmer has other family members with Celiac and has tested VERY positive (like myself) for Celiac and has already started the gluten-free diet. So for this individual to question the need for a biopsy was the correct thing to do. As I stated, it's entirely up to that person to decide, based upon history and how they are feeling. I stand by my comments. If you have pre-existing conditions that warrant further testing, then by all means, do what makes you comfortable but do not criticize those

that use common sense in making decisions.

As for the second scenario of a patient developing problems well into a gluten-free diet, having a baseline isn't going to make much difference in obtaining a diagnosis. What you infer is that without one, a doctor may not be able to make a diagnosis, based on more recent testing? That would be a dumb doctor and not one I would go to. It is insane to rely completely on standardized tests because they fail many people. If doctor's actually listened to their patients and used that dreaded common sense, you wouldn't see all the people you do coming to this board desperate for help from a compromised medical system. The only thing they really look for is cancer and if you don't have it, they begin to doubt your complaints. And the longer you go without them being able to actually "see" something, the odds are you'll be told it's all in your head....there's nothing wrong with you.

I still also think way too much testing is being done on a population that is being taught to really fear getting cancer. I do not think my body is a pre-cancerous cell waiting to explode just because I have Celiac disease. Those with genetic markers or a strong history of the disease are a totally different story.....they are the ones doctors need to concentrate on. If you walk around thinking something bad is going to happen, it probably will. Mental mind set has as much to do with disease as what you eat.

Thank you for your wishes of luck also.....I have avoided doctors most of my adult life and went to them WHEN NEEDED, like the population used to do. If I had relied on their warped attempts at diagnosis, I would be in the hospital now on a feeding tube. Something is wrong when a person with a broad knowledge of medicine but no medical degree (me) is able to diagnose 3 autoimmune problems that the medical community totally missed. I had in your face symptoms, was a poster child for the disease and had staggering blood work yet they were only concerned with a biopsy? HELLO!!!!!!

[sbj]

  Gemini said:

Let me see if I can't make myself clearer for you.....don't want to upset your goat! My comments were aimed at those individuals who have no pre-existing conditions, other than the Celiac symptoms, which would make cancer more of a risk factor. I stand by my comments. If you have pre-existing conditions that warrant further testing, then by all means, do what makes you comfortable but do not criticize those that use common sense in making decisions. HELLO!!!!!!

Well there you go lizard00!

My brother at age 46 had no 'pre-exisiting' conditions. He suffered from diarrhea and was losing weight. Cancer was not considered a risk factor. My brother died at age 48 from colorectal cancer - quite possibly because he did not trust the medical community to diagnose his condition (after all - he was only suffering from "celiac symptoms"), possibly because he self-diagnosed, definitely because he self-treated. When I read a post that says unless you are of a certain age you need not worry about cancer - that doctors use cancer as a scare tactic to perform unnecessary tests - I get extremely upset. My brother is the reason I am frequently on this forum urging self-diagnosers to consider causes other than celiac for their symptoms. I stand by everything I've written and I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense tells you better. It could kill you.

GOODBYE!!!!

[Gemini]

  sbj said:

Well there you go lizard00!

My brother at age 46 had no 'pre-exisiting' conditions. He suffered from diarrhea and was losing weight. Cancer was not considered a risk factor. My brother died at age 48 from colorectal cancer - quite possibly because he did not trust the medical community to diagnose his condition (after all - he was only suffering from "celiac symptoms"), possibly because he self-diagnosed, definitely because he self-treated. When I read a post that says unless you are of a certain age you need not worry about cancer - that doctors use cancer as a scare tactic to perform unnecessary tests - I get extremely upset. My brother is the reason I am frequently on this forum urging self-diagnosers to consider causes other than celiac for their symptoms. I stand by everything I've written and I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense tells you better. It could kill you.

GOODBYE!!!!

I am very sorry for the loss of your brother BUT if he was not a Celiac and had chronic diarrhea and weight loss, that IS a symptom of cancer. Doesn't matter whether or not he had pre-existing conditions in his case. Those 2 symptoms are symptoms of cancer and should have a doctor's attention. If he was a Celiac with on-going, severe problems, then further testing would be warranted also. You like to twist words, don't you?

Anyone presenting with those 2 symptoms, which were my symptoms at time of diagnosis, should be screened for celiac disease and have a history taken. The doctor I went to did the blood work first to see what she got from that. When it came back very positive, she pretty much diagnosed me with celiac disease. The reason included the fact I had already gone gluten-free and within 3 DAYS, my symptoms were going away, never to return. If I had cancer, the diet would have done nothing. Again, common sense prevails.

There are doctors, whether you want to admit it or not, that use the cancer scare to coerce people into having a boatload of tests they may not need. They do it to women all the time with mammograms. Just tell them you haven't had one in the past year and they act like you are cancer waiting to happen.

Not having tests does not cause cancer. Many people here on this forum know what's normal for them and what is not and use this to decide what tests are necessary. From some of the personal accounts written, it's no wonder many of them shy away from the medical profession. There is a big difference between avoiding doctors at all costs, even with nasty symptoms, and using doctors and testing when warranted and needed. It is not a doctor's job to control people's lives but to assist them if there is a problem. I understand why you would feel the way you do.....that's your experience and you lost your brother. However, not everyone needs a biopsy or may have one and go on to lead happy, healthy lives.

[sbj]

  Gemini said:

There are doctors, whether you want to admit it or not, that use the cancer scare to coerce people into having a boatload of tests they may not need. They do it to women all the time with mammograms. Just tell them you haven't had one in the past year and they act like you are cancer waiting to happen...Many people here on this forum know what's normal for them and what is not and use this to decide what tests are necessary.

As Homer Simpson once said, "That's crazy talk." I'll not reply to you directly anymore other than to rebut the dangerous advice that cancer screening should be avoided unless one doesn't 'feel normal.'

Have you ever met a breast cancer survivor? Did they suggest that they were happy they avoided doctors who 'coerced' them into recommended cancer screening? Do you not realize that self-exams don't always screen effectively for cancer? Do you not realize that most cancers don't present with symptoms at all and can only be detected with recommended screening?

I don't expect much backup on this forum but if anyone else is reading please seek regular recommended screening for cancer. This can be as simple as a blood or urine test. After age 50 it might include mammograms or colonoscopy. Most cancers are silent and you might never know you have cancer unless you are screened - even if you know your body better than your doctor does.

When it comes to cancer and your life you can't simply 'listen to your body' and decide for yourself what tests are necessary - you need to get the proper recommended screening even without any symptoms.

[farmer]

Just to let everyone know, if the GI wants me to get the biopsy, I will. I was only asking for an opinion. I certainly would abide by whatever a specialist tells me.

I also think that everyone should get a yearly physical, which includes routine blood work.

[sbj]

  farmer said:

Just to let everyone know, if the GI wants me to get the biopsy, I will. I was only asking for an opinion. I certainly would abide by whatever a specialist tells me.

I also think that everyone should get a yearly physical, which includes routine blood work.

I apologize, farmer, for sidetracking your topic. I'll not do it again.

[Gemini]

  Quote

Have you ever met a breast cancer survivor? Did they suggest that they were happy they avoided doctors who 'coerced' them into recommended cancer screening? Do you not realize that self-exams don't always screen effectively for cancer? Do you not realize that most cancers don't present with symptoms at all and can only be detected with recommended screening?

Actually, I know 3 women who are close to me who were diagnosed with breast cancer and only one was diagnosed through screening. The other 2 were going for those so called "important screenings" and were told they were fine....no problems. Within 3 months, both detected lumps ON THEIR OWN and were diagnosed after they went on the warpath with their doctors. Talk about being let down. They were devastated to think they did all the "supposed" right things and both the medical proession and their testing let them down. Hard to understand how you can be told you are fine and then have to have a mastectomy 3 months later when you find your own cancer. It's not all cut and dried like you seem to think. Again, you twist words...no one said to avoid doctors, just to use some common sense with testing.

  Quote

When it comes to cancer and your life you can't simply 'listen to your body' and decide for yourself what tests are necessary - you need to get the proper recommended screening even without any symptoms.

If you choose to go for all the screening tests, that's fine if it makes you feel safe. However, there are many on this forum who DO NOT NEED A BIOPSY FOR A CELIAC DIAGNOSIS. Having Celiac Disease does not mean you have cancer, either. In fact, those who stick to a strict gluten-free lifestyle are less likely to have cancer than the general population, which makes sense considering what most people eat today.

You may have had a different experience but do not tell others they are wrong or crazy for doing things differently than you do. How they come about a diagnosis for celiac disease may differ from what you do but that does not make them wrong.

To Farmer.....you will be having a biopsy because if you go to a GI specialist, they always want to do one. Mainstream physicians will not give a diagnosis without one, even if you present as a poster child for celiac disease, have flamingly high blood work and there are family members who have also been diagnosed. They make a lot of money from these procedures, even if some find that hard to believe. There are also liability concerns today, as you can see from some other postings. Good luck to you with your gluten-free lifestyle! I hope it is an easy transition for you.

[farmer]

I met with the gasto specialist yesterday.

He told me that he would not pursue the endoscope biopsy due to the fact that my celiac panel blood results were extremely high, and also my family history.

He said that he had never had a celiac panel titer come back as high as mine, and that I definitely, without a doubt, had celiac.

[ravenwoodglass]

  farmer said:

I met with the gasto specialist yesterday.

He told me that he would not pursue the endoscope biopsy due to the fact that my celiac panel blood results were extremely high, and also my family history.

He said that he had never had a celiac panel titer come back as high as mine, and that I definitely, without a doubt, had celiac.

You have a good doctor there. I hope you are now gluten free and on your way to healing.

[rinne]

  sbj said:

Well there you go lizard00!

My brother at age 46 had no 'pre-exisiting' conditions. He suffered from diarrhea and was losing weight. Cancer was not considered a risk factor. My brother died at age 48 from colorectal cancer - quite possibly because he did not trust the medical community to diagnose his condition (after all - he was only suffering from "celiac symptoms"), possibly because he self-diagnosed, definitely because he self-treated. When I read a post that says unless you are of a certain age you need not worry about cancer - that doctors use cancer as a scare tactic to perform unnecessary tests - I get extremely upset. My brother is the reason I am frequently on this forum urging self-diagnosers to consider causes other than celiac for their symptoms. I stand by everything I've written and I urge people to listen to their doctors. It is NOT common sense to avoid testing that a medical professional recommends because your own layman's common sense tells you better. It could kill you.

GOODBYE!!!!

So can testing: Open Original Shared Link

"One study performed across 36 UK hospitals found that 1 in 2000 patients died within 30 days of undergoing endoscopy. One-third of these deaths were due to complications of sedation. In addition, there were 20 perforations in 774 procedures, eight of which were fatal, giving a death rate of nearly 1 in 100 (Gut, 1995; 36: 462-7)."

I am glad you have your diagnosis and a great doctor.

[farmer]

Thanks to all who have given input. This is a great site.

I've been gluten-free for a little over a month, and I do feel much better (little to no gas, no bloating, no occasional nausea, etc.).

As a quick fyi, here is one of my blood results:

ttg iga: 7100

The negative range is <5. This is the # the gastro specialist said was the highest he had ever seen.

[MaryJones2]

wow! I think that's the highest I've seen anyone post here. I hope you are feeling better now.

[farmer]

Yes...much better.

[Tallforagirl]

  sbj said:

I don't expect much backup on this forum...

sbj, I'm right with you.

[farmer]

A bit of a mistake on my part. The gastro specialist gave me the correct #'s. The titer is the highest he has ever seen:

Endomysial IGA Antibody: 1:2560

A normal reading is <1:5

Also, my TTG IGA was >100. A normal reading is <5.

Just wanted to give the correct numbers.

[coldnight]

  sbj said:

LOL, I hear you SBJ, I think there's a middle ground. What doctors say is not gospel, but there is a lot of information and experience they have that the average person does not. So, it depends on the situation, but even breast cancer can strike young. I worked with the mother of a guy who has testicular cancer quite young, 19 I think. It's always best to at least get an opinion or two on something. Diet doesn't fix everything. Not to say that doctors are always right, I was told my numerous doctors I did not have a hernia when I was certain I did, because I had been diagnosed pre-insurance coverage, just looking for someone to dx it post-insurance, and had to see several. So, skepticism is good, just in a healthy dose.