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lngmk

Do I need the biopsy?

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Hi, Total newbie here so please excuse my lack of knowledge on the subject. I have been anemic and suffered from debilitating, chronic migraines for 16 years among many other symptoms. My doctor just did bloodwork to check for celiac and the ttg came back at 54.4 (my lab papers say normal is <12). She now wants to send me for a biopsy and when I asked if that was really necessary, she said 'welllllll, I'd hate to miss a cancer'. So, my question is - do I really need to do it? I went gluten free immediately after getting results and feel SO much better in only a week. The thought of going back on gluten and facing those migraines again feels very defeating. Thank you very any insight or advice you can provide. 

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Yes, get the scope, if you have only been off it a week the rebound should not bee that bad, off it for a few months and it will be unbearable. The scope and biopsy is the golden standard for diagnosing celiac disease. Having the dia will mean a whole lot later on in life in case of emergencies having it in the medical records is nice, prove to your self and family, government help, etc.  The blood test is iffy and can often miss the disease with a false negative. EVEN if you do test negative on the endoscope you can still go gluten-free and I would even suggest it. If you do not have celiac disease you could still have NCGS which can not be really properly diagnosed at this point in time.

The endoscope might also find other issues such as polyps, ulcers, or anything out of place that might need to be addressed.

Since your new you might want to check out the Newbie 101 thread for info on staying gluten free and dealing with the changes, I have list of gluten free food alternatives I can post also. We do suggest a whole foods only diet for a while to get used to being gluten-free and boost healing if you have intestinal damage. For the anemia etc. I might suggest getting testing and seeing if you need to supplement anything. We have a few members who are not celiac but have NCGS and they can give you a lot more help then me if that ends up being the case.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

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I agree with the biopsy! I think the thing that people don't get is that the "celiac" version of a gluten free diet is very strict. It is socially isolating and hard to do (mostly avoiding cross contamination).  Get the correct diagnosis now so that you do not second guess the diagnosis later because, Ennis is right, doing it later is much worse.

You don't mention how old you are but if you need it, you can get your colonoscopy at the same time and do it all under the same anesthesia.

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I had the biopsy because 1) it complied with what the majority of celiac experts and GIs recommend and 2) (this is a biggie....) I needed to know WITHOUT A DOUBT that I had celiac disease because I knew (having lived with my gluten-free hubby for a decade) what it meant, and 3) it gave me a baseline and ruled out other issues (e.g. H. Pylori, ulcers, etc.), finally, it has proven helpful when going to new doctors -- lab reports rarely lie.  

Not everyone can get the endoscopy for a variety of reasons.  But if you can afford it or are not close to dying,  I would ask that you consider it carefully.  I have a diagnosis, but my hubby does not.  He went Gluten Free based on the poor advice of his GP and my allergist.  He is doing great.  But he would be the first to tell you that I have had WAY more support from family, friends and medical, yes, medical.  

 

 

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For another opinion from someone who did not have the biopsy but did have a positive full Celiac panel that was off the charts.......your doctor should have done the FULL PANEL. She did one test that was very positive but the reason for doing the full panel is important.  Not only for a more solid diagnosis, but you should have the DGP or AGA/IgA testing also.  These tests are for reaction to gluten in your diet. If they are positive also, that bolsters a diagnosis AND is a reference point for re-testing your antibodies every year to see how compliant you are with the diet. Many doctors just re-run the tTg for compliance and that is incorrect testing. It does not tell you if you are still ingesting gluten from your diet but only tests for intestinal damage. It can also be raised from other autoimmune disease so it is extremely important for both the tTg and DGP to be run every time to get a clearer picture of what's going on. I hope I made that clear for you, if not, feel free to ask any questions you may have.

Secondly, a positive tTg does not indicate cancer and she is using scare tactics on you to get you to have the biopsy. I hate that.  The reason is that damage can be patchy and they can miss affected area's, even if you do have Celiac.  Then they will say you do not have it when you still may and the blood test was a false positive......which is rare and usually is only positive by a few points.  Yours isn't....it's elevated by enough to do the whole panel.  The whole panel includes a test called the EMA, and if that is positive, along with the tTg, then the odds are 99% you have Celiac.  OK, it might be 98% but you get the picture. 

I have a firm diagnosis because I failed all the tests by large numbers.  I am also a classic Celiac and was suffering from advanced malnutrition when diagnosed so that made it easier for me. Sometimes it is not so easy to diagnose. If you do decide to have the biopsy, you would need to go back on gluten and eat at least a couple of slices of bread per day for another couple of weeks, at least, to even hope for an accurate diagnosis. You have not been off gluten that long so I don't think you would need to do the full 6 week challenge but you never know...it's such a crap shoot with this disease. I totally understand your not wanting to eat gluten for the biopsy because I was so violently ill when it was my time with this that I wouldn't even consider it. But you must think of all this and decide for yourself. What I would do is tell her you WANT the full panel done for the reasons I told you and if she balks at that idea, then you do not have a good doctor who is willing to help diagnose you the correct way.

Good luck and let us know what you decide!

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Stick with it and get the biopsy. You won't regret it, as texasjen says, the diet is very demanding and can be very isolating. It can be easy to convince yourself you can have a little gluten now and then, or that you don't have to worry about cross contamination when there is any doubt about the diagnosis. And don't kid yourself, even those who love you and want the best for you will become weary of the strictness we have to take with our diet. They don't want the diagnosis to be true, of course because they care for you, but also for selfish reasons. Face it, this lifestyle impacts those closest to us and it requires all the support you can get plus a positive attitude from not only yourself, but from those closest to you

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Something I keep hearing and do not quite understand is why people think this diet is so hard and demanding.  I never found it to be at all. I think it is very inconvenient, at times, especially when there is a social function because you may have to bring your own food.  But that does not isolate you in  any way.  You bring your food and eat with everyone, as usual.

If you are a person who ate a pretty healthy diet to begin with, then you won't have a problem eating gluten free.  Meaning, those who eat a whole foods based diet with some junk food thrown in.....because everyone needs a cupcake now and again.  But if you relied on eating out as much as people do in today's world and ate a lot of fast foods, or do not like to cook, there is going to be a huge adjustment for you. In the end, the adjustment will be good because you are going to be a lot healthier for it.  As far as CC is concerned, you learn that like you do the diet and after some time, it becomes second nature. It's automatic for me, at this point. I just hate to hear the somewhat negative comments because that sets the tone for many who are new to Celiac Disease. Attitude is about 80% of the success you will have with it. 

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1 hour ago, Gemini said:

Something I keep hearing and do not quite understand is why people think this diet is so hard and demanding.  I never found it to be at all. I think it is very inconvenient, at times, especially when there is a social function because you may have to bring your own food.  But that does not isolate you in  any way.  You bring your food and eat with everyone, as usual.

If you are a person who ate a pretty healthy diet to begin with, then you won't have a problem eating gluten free.  Meaning, those who eat a whole foods based diet with some junk food thrown in.....because everyone needs a cupcake now and again.  But if you relied on eating out as much as people do in today's world and ate a lot of fast foods, or do not like to cook, there is going to be a huge adjustment for you. In the end, the adjustment will be good because you are going to be a lot healthier for it.  As far as CC is concerned, you learn that like you do the diet and after some time, it becomes second nature. It's automatic for me, at this point. I just hate to hear the somewhat negative comments because that sets the tone for many who are new to Celiac Disease. Attitude is about 80% of the success you will have with it. 

I applaud Gemini's post. I have not found it hard nor isolating, except at first when sorting out hidden gluten sources. I was so happy to have my pain decrease that I would have been happy if I only was eating potatoes,. As it is, there's such a huge range of foods you can eat that it's rather healthy and it's fun to explore what you can make. Even on a simple budget. I've been doing this for 9 years btw.

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Don't forget the reality of a formal diagnosis: You are forever in a higher risk group when seeking private life or health insurance. Healthcare in the USA could change dramatically in the next few weeks...it is a preexisting condition.

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Miss a cancer! That's awful for the doc to say that. 

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42 minutes ago, Victoria1234 said:

I applaud Gemini's post. I have not found it hard nor isolating, except at first when sorting out hidden gluten sources. I was so happy to have my pain decrease that I would have been happy if I only was eating potatoes,. As it is, there's such a huge range of foods you can eat that it's rather healthy and it's fun to explore what you can make. Even on a simple budget. I've been doing this for 9 years btw.

Thank you, and I am glad there are others who feel the same way I do.  It could be that we both have been doing this for so long, it is normal for us.  It definitely becomes so much easier the longer you are gluten-free.  I also was so grateful to be validated, after having docs telling me for years that it was all in my head. I was grateful that I didn't have to suffer through horrible treatments or have surgery. My perspective was different, I guess. I think liking to cook made a huge difference also and my brain was geared to thinking how I could make my favorite recipes gluten free and good tasting.  I love to be challenged.  The only downside is that travel requires more prep and planning but I still have traveled internationally 5 times since diagnosis and was glutened only twice, which did not ruin the trip. It may have slowed me down for 3 days but it didn't stop me. That was in the beginning and it has not happened in the last 3 trips.

I am not trying to disparage the hard time some people have when they are first diagnosed but once the initial shock is over, life will go on and you can be very happy with the diet and new way of doing things.  The product range has exploded since I was diagnosed so there is no need to feel deprived anymore.

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9 minutes ago, admin said:

Don't forget the reality of a formal diagnosis: You are forever in a higher risk group when seeking private life or health insurance. Healthcare in the USA could change dramatically in the next few weeks...it is a preexisting condition.

Yup....that's another whole issue that I hope will not explode on us.  It's a problem until you reach the age of 65, when you can go on Medicare. They seem to not penalize people so much with that because you are older anyway and will have some age related stuff going on.  As much as I don't want single payer, insurance companies hold everyone with preexisting conditions hostage.  Even Obama Care charged people more for preexisting conditions because insurance won't have it any other way. I am not sure we can continue with the insurance based system. You can certainly obtain insurance but you might have to sell one of your children to pay the premiums......:o

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7 hours ago, Ennis_TX said:

Yes, get the scope, if you have only been off it a week the rebound should not bee that bad, off it for a few months and it will be unbearable. The scope and biopsy is the golden standard for diagnosing celiac disease. Having the dia will mean a whole lot later on in life in case of emergencies having it in the medical records is nice, prove to your self and family, government help, etc.  The blood test is iffy and can often miss the disease with a false negative. EVEN if you do test negative on the endoscope you can still go gluten-free and I would even suggest it. If you do not have celiac disease you could still have NCGS which can not be really properly diagnosed at this point in time.

The endoscope might also find other issues such as polyps, ulcers, or anything out of place that might need to be addressed.

Since your new you might want to check out the Newbie 101 thread for info on staying gluten free and dealing with the changes, I have list of gluten free food alternatives I can post also. We do suggest a whole foods only diet for a while to get used to being gluten-free and boost healing if you have intestinal damage. For the anemia etc. I might suggest getting testing and seeing if you need to supplement anything. We have a few members who are not celiac but have NCGS and they can give you a lot more help then me if that ends up being the case.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

Thank you all for the awesome info and insight! I should have added that I am in Canada and currently the wait time for an endoscopy is 3-6 months. So that is why the thought of going back to gluten at that stage is like a nightmare to even think about! My doctor is not terribly knowledgable about celiac and I would guess that's why she did not order all of the tests that she should have (we have a major doctor shortage in my city and I'm lucky to even have a family doctor). She IS referring me to a Gastro guy but that will likely take months also. I have a son with a peanut allergy and so I have not found the process of clearing out my cupboards and whatnot terribly overwhelming and don't really eat out much so I think will be pretty comfortable with avoiding traces if need be. I guess my next step should be requesting she order all of the tests you all have mentioned!

Edited by lngmk

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31 minutes ago, lngmk said:

Thank you all for the awesome info and insight! I should have added that I am in Canada and currently the wait time for an endoscopy is 3-6 months. So that is why the thought of going back to gluten at that stage is like a nightmare to even think about! My doctor is not terribly knowledgable about celiac and I would guess that's why she did not order all of the tests that she should have (we have a major doctor shortage in my city and I'm lucky to even have a family doctor). She IS referring me to a Gastro guy but that will likely take months also. I have a son with a peanut allergy and so I have not found the process of clearing out my cupboards and whatnot terribly overwhelming and don't really eat out much so I think will be pretty comfortable with avoiding traces if need be. I guess my next step should be requesting she order all of the tests you all have mentioned!

Considering the wait time before you can even see the GI and how ill you were before and the good results you have seen on a gluten free trial personally I would pass on the biopsy. You should consider getting the full panel done ASAP and your doctor should also run a vitamin and mineral panel to make sure you don't have any severe deficiencies. Talk to your doctor and see if the doc will give you a formal diagnosis based on relief of symptoms and your blood work returning to normal on a retest in a few months.

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The biopsy is not required for an official diagnosis. Positive blood test and response to gluten free diet is all that is required. It was sufficient for me, along with the DNA test (shows potential only), to convince me what I need to do to stay healthy.I have a "prescription" letter for gluten free diet from my doctor based on those things.

And pre-existing condition only applies if you had a period without insurance, it's like if you wait for your house to burn down, then go buy fire insurance and expect coverage. As long as you've had continuous coverage, this is not a consideration.

 

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Also remember that a negative in celiac tests, especially the biopsy, is NOT CONCLUSIVE, is NOT PROOF YOU DO NOT HAVE IT. 

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On 7/13/2017 at 1:55 PM, lngmk said:

Thank you all for the awesome info and insight! I should have added that I am in Canada and currently the wait time for an endoscopy is 3-6 months. So that is why the thought of going back to gluten at that stage is like a nightmare to even think about! My doctor is not terribly knowledgable about celiac and I would guess that's why she did not order all of the tests that she should have (we have a major doctor shortage in my city and I'm lucky to even have a family doctor). She IS referring me to a Gastro guy but that will likely take months also. I have a son with a peanut allergy and so I have not found the process of clearing out my cupboards and whatnot terribly overwhelming and don't really eat out much so I think will be pretty comfortable with avoiding traces if need be. I guess my next step should be requesting she order all of the tests you all have mentioned!

Ugh!  I keep forgetting that this forum reaches beyond the US.  If I had to wait months for an endoscopy, I would most likely skip it.  I bet your doctor would be happy to diagnose you if you improve in a gluten free diet.  

I hope you feel better soon.  

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32 minutes ago, Beverage said:

The biopsy is not required for an official diagnosis. Positive blood test and response to gluten free diet is all that is required. It was sufficient for me, along with the DNA test (shows potential only), to convince me what I need to do to stay healthy.I have a "prescription" letter for gluten free diet from my doctor based on those things.

And pre-existing condition only applies if you had a period without insurance, it's like if you wait for your house to burn down, then go buy fire insurance and expect coverage. As long as you've had continuous coverage, this is not a consideration.

 

Just want to clarify that pre-existing used to apply even if you have had continuous coverage and you were applying to another insurance carrier.  I could not get insurance a while back due to Hashimoto's.  I never went without insurance ever in my life.  When I did switch carriers, (could not go to the doctor for one year but I still paid my premiums), I had to pay more.  Now, with the National Healthcare Act, we are concerned that I will denied even though I have insurance.  My own company may drop me even though they have been insuring me.  As it stands, we pay $24,000 a year for medical coverage for three people! 

Edited by cyclinglady

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11 minutes ago, cyclinglady said:

Just want to clarify that pre-existing used to apply even if you have had continuous coverage and you were applying to another insurance carrier.  I could not get insurance a while back due to Hashimoto's.  I never went without insurance ever in my life.  When I did switch carriers, (could not go to the doctor for one year but I still paid my premiums), I had to pay more.  Now, with the National Healthcare Act, we are concerned that I will denied even though I have insurance.  My own company may drop me even though they have been insuring me.  As it stands, we pay $24,000 a year for medical coverage for three people! 

If you have continuous coverage with an employer, you would be charged the group rate and were not penalized for preexisting conditions. If you lose your job and were forced to apply through the government site, you WERE PENALIZED. You could be charged up to 3 times the amount of a young, healthy person and the bill that keeps dying in the Senate right now (thankfully) was going to penalize you by age (50-64), up to 5 times the amount of a young, healthy person. With insurance companies involved, that's what you are going to get.  Both plans were not good for Americans.  Cyclinglady's comments are correct.  It is stupid because everyone has a preexisting condition these days.  How about insurance that people can actually use?  :rolleyes:  I am just sitting back and waiting for it to all implode. The they will be forced to figure it out or docs won't get paid.  That won't last long......

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    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
    Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
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