New Gi Wants And Endoscopy

[Wolicki]

I was diagnosed 3 months ago via blood tests. Went Gluten free in June, most syptoms disappeared immediately after 10 years of terrible illness. My regular GI didn't know a thing about Celiac, so I switched to one who is more knowledgable. I declined the endo.

My first visit was yesterday with the new doc. She seems a lot more knowledgeable, but insists on an endoscopy. I told her I would never go back to gluten and that I understood that an endo could show no signs of celiac while on a gluten-free diet. She said yes, that was true, and that it's ok if I don't want to eat gluten but she wants to "check for damage."

The only GI sypptoms I have now are related to food intolerances, but she says she wants to "make sure" by checking via endo.

So two questions:

1. Since I have been gluten-free for 3 months, wouldn't and endo be negative or inconclusive?

2. Suppose she does find damage? Isn't the only treatment a gluten free diet, or is there something else they can do to help heal it?

I am really not interested in invasive testing just to prove to a new doctor that I have issues with gluten. I would appreciater your input very much!

[Lisa]

I can't walk in your shoes, but it would seem wise to me, that after ten years of being terrible ill, an endoscopy and colonoscopy might be wise, if for nothing else but to rule out more serious conditions. Although, I don't see the need to return to glute. That issue is a given.

Anytime anyone has had digestive issues, I think it's a smart thing to do.

[ravenwoodglass]

The choice is yours. If you are having continued issues then it wouldn't be a bad idea just to be on the safe side but don't use it as a diagnostic tool for the celiac at this point. If your over 50 you may want to consider having the routine colonoscopy done and the endo at the same time. Have they rerun any of your blood work yet? You have only been on the diet for 3 months so it may not have dropped a lot but it might be useful.

[tiggsy]

I'm inclined to agree with you about the endoscopy. What's the need to check for damage? How will it change anything? Is it going to cost you money for no value?

[ang1e0251]

I think I would look at family history if there are serious illnesses there. You have noted you have been ill for 10 years. The endo can be a baseline against conditions down the road just as a baseline colonoscopy at age 50 is. It's not that they expect to find growths or cancer but it's a good time to check and have the pictures and biopsys against future symptoms.

[Gemini]

I was diagnosed 3 months ago via blood tests. Went Gluten free in June, most syptoms disappeared immediately after 10 years of terrible illness. My regular GI didn't know a thing about Celiac, so I switched to one who is more knowledgable. I declined the endo.

My first visit was yesterday with the new doc. She seems a lot more knowledgeable, but insists on an endoscopy. I told her I would never go back to gluten and that I understood that an endo could show no signs of celiac while on a gluten-free diet. She said yes, that was true, and that it's ok if I don't want to eat gluten but she wants to "check for damage."

The only GI sypptoms I have now are related to food intolerances, but she says she wants to "make sure" by checking via endo.

So two questions:

1. Since I have been gluten-free for 3 months, wouldn't and endo be negative or inconclusive?

2. Suppose she does find damage? Isn't the only treatment a gluten free diet, or is there something else they can do to help heal it?

I am really not interested in invasive testing just to prove to a new doctor that I have issues with gluten. I would appreciater your input very much!

There are many schools of thought on this and I will offer my experience because it mirrors your own.

I was terribly symptomatic for 25 years and was diagnosed via blood work at 46. I was not trusting of the medical profession because they screwed up royally over that time and I ended up diagnosing myself, then confirming it via blood work with my thyroid doctor. It was overwhelmingly positive on all tests so there is no doubt I was a Celiac. I declined the endo because I didn't go through my PCP or have a GI doctor, plus firmly believe invasive testing should be reserved for those who clearly need it and not forced on everyone as a matter of course.

My symptoms resolved and now, almost 5 years later, I am completely asymptomatic and my gut couldn't feel any better. I have a new PCP, whom I love, and she gently has tried to get me to have an endo. We had a good discussion about it and I honestly don't see the point. I have gained weight so now make the weight charts, have no symptoms of any GI issues and feel pretty good, aside from some thyroid re-adjustments. Food no longer bothers me AT ALL.

Many people need to have testing done for peace of mind. I tend to listen to my body and clearly know what is normal for me and what is not. I have 4 autoimmune diseases in total and diagnosed every one of them myself and backed them up with blood work and doctor visits. I actually pissed a couple of docs off because I found what they didn't. I have also learned that doctors of today want to see a picture before they believe that nothing is wrong, which crosses over into liability concerns....they do not want to be sued and that is a driving force today in the overuse of screening tests. Add to that my attitude that I don't believe I'm more susceptible to cancer just because I'm a Celiac.....if you take good care of yourself and follow the diet religiously, the odds are you'll be perfectly OK. I guess I don't have the worry gene!

Having said that, you state you are still having symptoms. Are they interrupting your life or are they slowly getting better? Once you cut out what you shouldn't be eating, if you are fairly healthy, the GI issues should resolve. If not, this may be the reason the doc wants to scope you and you'll have to give it serous thought. There is a balance but I understand what you are going through. I turned 50 this year and know the colonoscopy talk will pop up at my next visit. I have no plans to have one done at this stage of the game but have told my new PCP that I would not rule out having one done when I am older. The 50 mark is too young for someone with no family history of GI cancers but that is just my opinion. I have autoimmune diseases galore in my family but we are not a cancer family, thank God!

Good luck but be prepared for this insistence on being scoped. They all do it today and I don't necessarily agree with it but it really is your choice alone to make, after talking with your physician.

I would have had one done had my symptoms continued but I am doing so well gut wise, it seems pointless right now. Good luck to you and glad you at least got your diagnosis as to what was wrong!

[ravenwoodglass]

It's not that they expect to find growths or cancer

But they can find them. When they did my endo and colonscopy they found that my duodenum has precancerous changes, undoubtedly due to my many years of misdiagnosis, and the lower scope revealed polyps. We can't always feel the bad stuff that is going on and but it is a personal choice whether to have these tests done. I put them off until over 6 years after I was diagnosed but in the long run I am glad I had them done as now we know that I have a higher risk and need to be checked more frequently even though I am symptom free unless I get into something that I shouldn't.

[Gemini]

But they can find them. When they did my endo and colonscopy they found that my duodenum has precancerous changes, undoubtedly due to my many years of misdiagnosis, and the lower scope revealed polyps. We can't always feel the bad stuff that is going on and but it is a personal choice whether to have these tests done. I put them off until over 6 years after I was diagnosed but in the long run I am glad I had them done as now we know that I have a higher risk and need to be checked more frequently even though I am symptom free unless I get into something that I shouldn't.

Very true but here's my point....my family is loaded with undiagnosed Celiacs in denial. They do not want to know and have severe (at times) symptoms and have had for as many years as I did. They get their little screenings done, which I find weird considering they refuse to eat a healthy diet, let alone a gluten free one. They all have come back with good reports and no problems at all....not even a polyp. This is just the colonoscopy alone, they do not have endo's. Also, pre-cancerous changes do not necessarily mean you will develop cancer. I had pre-cancerous changes to my cervix, from the birth control pill, which cleared up on it's own, with no treatment, once I stopped taking the pill. Never have had a problem since.

If my family had a history of cancer, things would be different but many people never develop cancer, even though you would think they might. I really think not everyone needs to be screened, unless you cannot move on in life without a picture. If that's what it takes to make people comfortable, then fine, have it done. But the whole routine screening thing is part of the reason health care costs so much these days....they are expensive tests and we all have to pay for them indirectly through health premiums.

As far as symptoms go, most people do not know what to look for. I know people who claim they had no symptoms but after speaking with them, they did have symptoms but were unaware that they were a warning sign. There is just a big disconnect with people taking responsibility for their health so they need to have a doctor do it for them. Ultimately, it's up to the person whether they have them done or not and I don't think not having them done right away makes anyone foolish. Doctors like to put the fear of cancer into everyone to comply and that is NOT good medicine. I didn't notice everyone keeling over and dying years ago before we had these screening tests, in fact, I think people did better for many reasons. They also didn't worry so much about what may never happen.

[ravenwoodglass]

Very true but here's my point....my family is loaded with undiagnosed Celiacs in denial. They do not want to know and have severe (at times) symptoms and have had for as many years as I did. They get their little screenings done, which I find weird considering they refuse to eat a healthy diet, let alone a gluten free one. They all have come back with good reports and no problems at all....not even a polyp. This is just the colonoscopy alone, they do not have endo's. Also, pre-cancerous changes do not necessarily mean you will develop cancer. I had pre-cancerous changes to my cervix, from the birth control pill, which cleared up on it's own, with no treatment, once I stopped taking the pill. Never have had a problem since.

If my family had a history of cancer, things would be different but many people never develop cancer, even though you would think they might. I really think not everyone needs to be screened, unless you cannot move on in life without a picture. If that's what it takes to make people comfortable, then fine, have it done. But the whole routine screening thing is part of the reason health care costs so much these days....they are expensive tests and we all have to pay for them indirectly through health premiums.

As far as symptoms go, most people do not know what to look for. I know people who claim they had no symptoms but after speaking with them, they did have symptoms but were unaware that they were a warning sign. There is just a big disconnect with people taking responsibility for their health so they need to have a doctor do it for them. Ultimately, it's up to the person whether they have them done or not and I don't think not having them done right away makes anyone foolish. Doctors like to put the fear of cancer into everyone to comply and that is NOT good medicine. I didn't notice everyone keeling over and dying years ago before we had these screening tests, in fact, I think people did better for many reasons. They also didn't worry so much about what may never happen.

Having the testing or not is entirely an individual choice. I did not at any point say that it would be foolish not to have the testing done. Some people worry and/or have a family history or symptoms that might make them more likely to choose to have the testing done. Others may choose to never ever have a colonscopy or any other form of screening and that is their choice.

The original poster was asking for reasons why her doctor was wanting to do the scopes. I was simply stating reasons why they would do them. The doctor may also want to check for ulcers or other issues that may be giving her continued symptoms. The doctor seems aware that the testing would not be useful for celiac diagnosis purposes. Most GI would want to do the same thing and in the end it is up to the OP whether she feels the need for more testing.

[jerseyangel]

It's up to you, of course. My new GI last year (I had moved to another state from the one I was diagnosed in) wanted to do an endoscopy since I had not had one since I was diagnosed 3 years prior. She was aware I had been strictly gluten-free for the 3 years.

I'm glad I did it since she found stomach polyps which had to be biopsied and also a hiatal hernia, which explained some odd symptoms I was having but didn't mention to her beforehand.

Just some food for thought--there are other things that can show up on an endo that aren't connected to Celiac.

[Wolicki]

Well, that was a healthy discussion, wasn't it?

I've already had 2 colonoscopies, one at 40 and one at 43 (about 5 months ago). My dad died from colon cancer at 63, so I had my first screen done that year. All clean as a whistle. The old GI did an endo at the same time of my esophogus and stomach, and found gastritis and a little esophogitis- that appears to have cleared up- mo more meds or Tums. I think my small intestine is the only part that hasn't been looked at.

The issues I am having now are simply that grains and nut butters cause gas , bloating and gurgly noises, so I dont eat them. So I dOther than that, I feel great. The 10 years of being ill was joint pain, chest pain, fatigue, anxiety, it felt like I had the flu all the time. I lost a lot of weight and had C.

I don't think she suspects there's an additional problem, but that she just wants to see for herself that I have Celiacs. Maybe I am just down on doctors because I feel like they let me down for so long....<sigh>

[ravenwoodglass]

I don't think she suspects there's an additional problem, but that she just wants to see for herself that I have Celiacs. Maybe I am just down on doctors because I feel like they let me down for so long....<sigh>

If that is the case I personally would tell her 'thanks but no thanks'.

[sussarliv]

Hello!

I am new here, but going through the same. My blood tests are pretty positive but my GI wants a biopsy anyway.

Between the blood test and the appt with the GI, I took myself off of all gluten and I felt wonderful. Now I am back on it and getting more bloated by the hour

Anyway - my GI told me 2-3 weeks of a heavy gulten diet will work. Especially since I reacted so fast to being off of the gluten.

Good luck!

Susan

[Wolicki]

Hello!

I am new here, but going through the same. My blood tests are pretty positive but my GI wants a biopsy anyway.

Between the blood test and the appt with the GI, I took myself off of all gluten and I felt wonderful. Now I am back on it and getting more bloated by the hour

Anyway - my GI told me 2-3 weeks of a heavy gulten diet will work. Especially since I reacted so fast to being off of the gluten.

Good luck!

Susan

You're a brave soul. I will not go back to gluten. Never.

[sussarliv]

You're a brave soul. I will not go back to gluten. Never.

Thanks! I keep telling myself that. I went to bed last night looking like a beach whale.

All my symptoms are back . This is just the pits.

Susan

[LDJofDenver]

My GI doc wanted to do the endoscopy and it was 6-7 months after I went gluten free. She said I did not have to go back on gluten for this procedure (perhaps because I was in my 50s when diagnosed and had decades of damage?). I went ahead with it because it was time I also had a colonoscopy, and it made sense to just do both and get it over with.

Well the biopsy showed significant damage (still, she was right), and also revealed esophageal damage due to GERD (which they term as a precancerous thing), and gastritis. So I am glad I did the endoscopy. Most importantly because it found other potentially serious things. I am taking prescription Prilosec for the GERD now, which hopefully will keep me in the 97% group where the esophageal condition never crosses over to cancer.

Just my story, to add to your decision-making process.

Best to you.

[pewpewlasers]

This is useful to hear. I just saw a new gastro today and he wants to scope me even though I have been gluten free for over a year.

[StacyA]

Hello!

I am new here, but going through the same. My blood tests are pretty positive but my GI wants a biopsy anyway.

Between the blood test and the appt with the GI, I took myself off of all gluten and I felt wonderful. Now I am back on it and getting more bloated by the hour

Anyway - my GI told me 2-3 weeks of a heavy gulten diet will work. Especially since I reacted so fast to being off of the gluten.

Good luck!

Susan

Susan - have you had your biopsy yet? My labs were high and my GI doc said to go gluten-free, but after 3 weeks of gluten-free I decided I wanted the biopsy to be absolutely sure - so I went back on gluten for 3 weeks and had my biopsy today. My doc said everything looked okay to the naked eye, but we're waiting for the pathologist to look. I'm worried 3 weeks on gluten wasn't long enough, although I wasn't gluten-free for all that long either - so I wondered what your results were if they've come back yet.

-Stacy