Endoscopy And Diagnosis. Why Or Why Not?

[user001]

I saw a gastro today for the first time since my positive blood results and at 4 months gluten free,

 

He says my levels were pretty high and i most definately have celiac disease, but he was pushing for the endoscopy. He made it seem like its really important to have a diagnosis on file and the endoscopy is the only way to actually, officially diagnose celiac disease.

 

Even though I have pretty decent insurance, it is still a bit costly, about $300 or a little less on the day of the endo procedure. He made it clear that he really doesn't want me to have to go back on gluten, but I do need to have this test done within 2 months or so, or with the 4 months gluten-free under my belt, the results wont be representative of whats going on.

 

Is it really important to have the endoscopy, if I am already committed to living a gluten free life? Why or why not?

[beth01]

1. It's nice to have a base line test so they can compare how your treatment is working.

2. To get a official diagnosis for Celiac.  Is your doctor stating in your medical charts that you have a diagnosis for Celiac, or is he stating things like " probable"?  You might have problems with follow up care if you aren't confirmed ( insurance not paying for follow up tests based on no diagnosis).

3. If you are of school age it needs to be stated on file that you are a Celiac if you want the school to be providing meals. Celiac is covered under the disability acts.  I need to have one for my daughter, she is 11.  They won't even send a note home for parents without that letter on her file.  Frustrating, but necessary.

4. Because the testing is so fun. Not as much as the colonoscopy but I already have a big smiley face on the calendar for the next two.  I am so excited!  *See disclaimer.

 

I know some have been officially been "outed" as a celiac without the endoscopy.  I am not sure if that is based on medical history, family history, or just what kind of doctor you have.  We are both relatively new to this and are learning.

 

* not laced with sarcasm at all....or is it?

[Gemini]

If your blood test results were high and you failed a number of or all of the tests on the Celiac panel, then you have a diagnosis, whether or not your doctor says you do or don't. It's funny because I was also diagnosed via blood work and I did gene testing and have a double Celiac gene.  I did not find my present doctor until 3 years after diagnosis and when she saw my blood work and gene testing, she did not go any further.....Celiac Disease is in my charts. I also have 3 other autoimmune diseases that are strongly linked to Celiac so between all this and the fact I am petite and don't weigh much, every doctor I have been to in the 9 years since I have been diagnosed never fails to believe me.  There are many doctors who will diagnose on positive bloodwork....solid, positive blood work and resolution of symptoms after starting the gluten-free diet. I have to add that most GI's may not diagnose on blood work alone because, quite honestly, they make big bucks doing the endo and they are all liability crazed these days. I have never been to any GI doctor in the last 20 years because they misdiagnosed me for years and told me to see a shrink so I have little respect for the profession.  It was my thyroid doctor who agreed to do the blood work on me after I became life threateningly ill with Celiac. You do what you gotta do to get better.  It's funny, but your post says your GI doctor says you definitely have Celiac Disease BUT the endo is the only way to officially diagnose it.  That's sounds absolutely insane.

 

You really do not need a baseline to "see" how treatment is working because recovery and feeling great is a pretty good way to see if it is working.  My attitude was that if I did not get better in a decent amount of time or was still having gut issues, then I would submit to the endo.  But that never happened because once I went strictly gluten-free, my recovery was nothing short of a miracle.  It was slow but always on an upward spiral...until the problem with dairy reared it's ugly head and I went dairy free.  I can now tolerate small amounts of dairy and do fine with that. But, overall, I am doing great and there is no such thing as a stomach problem for me anymore.  It is such a good feeling!

 

You sound on the fence about this and I understand.  It really is up to you to decide if you want to do this.  If the doctor won't "officially" diagnose you without the endo, find a doctor who won't hold you hostage over a test to get a diagnosis you already have with your blood work.  But the blood work needs to be definitive and not just a weak positive because, otherwise, you'll need more testing to get anyone to believe you.

 

I have never, ever, not once considered cheating on the diet.  I was down to 94 pounds at diagnosis and never, ever want to go there again!  It is not hard at all to eat gluten-free when your symptoms disappear and you gain your health back.  Kind of inconvenient at times, I admit, but hard.....no.

 

Good luck to you! 

 

 

[KCG91]

Same here - I saw a gastro after three months gluten-free (and stonking high initial blood test results) and he said that if he was a betting man he'd put money on my having coeliac. He wanted me to do a two week challenge prior to the endoscopy and wasn't interested in diagnosing it any other way than that (eg. blood tests, reaction to gluten-free diet etc). Alarm bells rang at the two week challenge as I was sure it had to be longer to be effective, so I walked out and didn't go back. Luckily my GP (who, here in England, is responsible for arranging future blood tests and writing prescriptions for gluten-free food) also thought he was an idiot and decided to diagnose me based on my initial blood tests, lowered antibodies at three months and also improved anaemia. Having realised how badly I react to gluten now I would never do a challenge - I would've had the endoscopy if it had been a shorter wait and staying on gluten wasn't going to affect my final year at uni, but the circumstances were what they were and the no-endoscopy/biopsy diagnosis is right for me. Nobody outside my immediate family (and you guys ) knows any differently about the testing so there's no social issues with it either.

[user001]

@Gemini, not sure how weak my results were. I posted another thread here, if you want to see. https://www.celiac.com/forums/topic/107942-help-me-de-code-these-results/

He really did seem to be pushing the endo, and then i found out that himself and a few other doctors are owners themselves of the surgical center where the procedure is performed. Interesting. I already know through 23andme that i have a genetic predisposition to celiac disease, i am pretty sure my grandmother had it and maybe my father. I already told him that all my of crazy list of 40something symptoms and that many of them have lessened or nearly disappeared on a gluten-free diet. I mean it all makes sense. He talked like the endo would confirm what we already know and provide a diagnosis. I am also leery about him saying I wouldnt need to do a gluten challenge before the endo, in fact he said he didnt want me to. I really DONT ever want to, although he was really nice and generally knowlegable, I am surprised this is a doctor i found on the list on THIS website.

 

Would it be best to retest these same tests with my GP in a few months to see if I am improving? Is that generally a good way to measure progress with healing?

[Gemini]

Your results are far from weak!     With a positive IgA/tTg and EMA, the odds that you have Celiac are around 98%, according to what I have read from doctor research.

I failed all the tests in the panel by huge numbers so there was no doubt for me, either.  I was also losing 1 pound per day the week I hit the wall with it so going gluten-free was imperative for me. 

 

I would wait at least 6 months before you retest.  Give it time for your body to heal.  To be honest, I waited a full year before re-test and low and behold, all numbers were in the low normal range but I ate mainly whole foods, except for gluten-free bread and a few treats because I really needed to gain weight.  It can take up to 2 years for some people to have their antibodies return to normal. As long as your symptoms are diminishing and going away and you feel good, you can wait a little longer to re-test.  Then I would do a second screen at the one year mark.

 

Yes, I have heard of doctors who insist on an endo and then you find out they own or are part owners in those fancy scoping practices.  I think that is a conflict of interest.

Not everyone needs a scope for diagnostic purposes.  Even Dr. Fasano stated this and gives other criteria for diagnosing Celiac. And certainly, if you have ongoing gut problems and pain, an endo would be warranted. Common sense should play a part in this too.

[user001]

Gemini, this is after 4 months gluten-free! I had no idea about cross contamination at all, i need to be much more careful!

 

Lately, I have been down in the dumps and I have been eating junk, but overall little cuts and scrapes have been healing so much quicker. I eat fresh meats, veggies and fruits but I should be eating more. I need to nourish my body and be better to myself. I feel like i have never been HEALTHY.

[across]

I spend about eight hours a week with people in nursing homes and can tell you that if I'm ever sick enough to be in a hospital or nursing home, I want to have an official diagnosis in my chart. I have a friend who is diabetic and has lost a leg to the disease, and even though they know her diagnosis, they still feed her potatoes and apple juice practically every day -- even though her husband keeps reminding them of her diabetes.

 

Without a celiac diagnosis in the charts, I can just about guarantee you that they will feed you gluten-containing foods. With a diagnosis, they ​might not. If I'm sick enough to be in a hospital or nursing home and can't speak for myself, I want to have a diagnosis in my charts. I don't want them to feed me food that will make me sicker than I already am!

 

Just one thing to consider...

[Gemini]

Jules......those numbers after 4 months gluten-free, might not be because you are eating gluten but it could be that your numbers were extremely high and they have come down to what you got as results on your testing. When they don't give you an absolute number to begin with, you have no idea how high the numbers actually were. But yes, cc is serious so tighten up that diet and be strict. If you have a craving for junk, indulge in something small and really gluten-free. No need to deprive yourself completely when healing. If you tolerate it well, don't worry about it.

As for nursing home care, I don't see that as a huge problem in the future. Celiac is becoming very mainstream and many doctors will diagnose with blood results only. You are going to see many people of younger generations with serious food allergies so they are going to have to address this issue in future. The current generation of people who require nursing home care came from a different generation where food allergies and intolerances were much rarer......except diabetes. Plus, I would advise keeping all original testing so you can have that on your file. Family members can request special dietary restrictions and I' m sure any nursing facility won't want to get sued for making them sick. Things are going to change on that front as there are too many people with food issues and it isn't all Celiac Disease. Will they feed peanut butter to those with peanut allergies?

[user001]

It is really such a silent disease, that is likely why. We don't swell up in the face and die in front of you if you give us gluten. We get sick a few hours later, or the next day. Then we get tired, achy and depressed. That's all bullsh*t and no one really cares I suppose. Im coming up on my 30th birthday and I have to say I haven't thought much about my elderly years yet. I guess up till now, I have always been sick for no reason so I really just figured that I will die young.

[across]

Jules......those numbers after 4 months gluten-free, might not be because you are eating gluten but it could be that your numbers were extremely high and they have come down to what you got as results on your testing. When they don't give you an absolute number to begin with, you have no idea how high the numbers actually were. But yes, cc is serious so tighten up that diet and be strict. If you have a craving for junk, indulge in something small and really gluten-free. No need to deprive yourself completely when healing. If you tolerate it well, don't worry about it.

As for nursing home care, I don't see that as a huge problem in the future. Celiac is becoming very mainstream and many doctors will diagnose with blood results only. You are going to see many people of younger generations with serious food allergies so they are going to have to address this issue in future. The current generation of people who require nursing home care came from a different generation where food allergies and intolerances were much rarer......except diabetes. Plus, I would advise keeping all original testing so you can have that on your file. Family members can request special dietary restrictions and I' m sure any nursing facility won't want to get sued for making them sick. Things are going to change on that front as there are too many people with food issues and it isn't all Celiac Disease. Will they feed peanut butter to those with peanut allergies?

Unfortunately, what they should do, and what they actually do in nursing homes are two very different things. My friend the diabetic who gets fed potatoes and apple juice daily is not a rare example. This is from my experience dealing with multiple people in multiple nursing homes. The family members' request in her case has made no difference whatsoever. Unfortunately, we are a society that devalues the elderly and infirm, and the care in many nursing homes reflects this.

[user001]

@across- im sure there are some really dedicated, kind people that work in nursing homes but from the stories that i have heard from several people, now including yourself, i am not surprised!

[user001]

As in, i have heard alot of stories of people who work i nursing homes being careless and horrible people who can barely pass a drug or background test.

[across]

@across- im sure there are some really dedicated, kind people that work in nursing homes but from the stories that i have heard from several people, now including yourself, i am not surprised!

Yes, there are some kind, really dedicated people who work in nursing homes. However, nursing home work is very difficult and many people don't want to do it. As a result, they tend to get either the very dedicated, loving people who are there because they really care, or the people who had serious trouble getting a job anywhere else. You can come to your own conclusions about which type there are likely to be more of, and what that means for how careful they are likely to be about gluten.

[Questore]

Having just turned 59, and being alone...no spouse, kids or family...I am looking at having to get healthy enough to live on my 5 acres in SoCal, and raise my own food indefinately, and hopefully falling over in my greenhouse, and not being found until it's far too late to do anything for me.

 

That means a living trust, orders to be taken of at home...which is cheaper than nursing homes, and a paid off home to use as a checking account for my last days.  That and a sincere belief that YHVH will prevent me from acquiring any more disabilities than I already have will keep me from a half-life in a nursing home, as SoCal is already letting people die at home now.  Another 20 years, and the state will be helping us exit this life quickly, I have no doubt.

 

A full Diagnosis is valuable if you need it to get appropriate treatment in the future, and most people do need it for that, not to mention for warning your family about their possible genetic link.

[1desperateladysaved]

I didn't have an endoscopy two years ago when I was diagnosed.  My MD doctor (at the time) didn't think it was necessary.  Since than, I have been improving and having issues seeming to be related to celiac.  I have had my nutrient levels go up.  I decided to do the endoscopy (along with colonoscopy) now.  I refuse a gluten challenge and likely the damage will be healed.  I feel I want to check for damages to work on healing all that is ailing.  That is why I decided to do these tests now.

 

Dee

[Gemini]

Unfortunately, what they should do, and what they actually do in nursing homes are two very different things. My friend the diabetic who gets fed potatoes and apple juice daily is not a rare example. This is from my experience dealing with multiple people in multiple nursing homes. The family members' request in her case has made no difference whatsoever. Unfortunately, we are a society that devalues the elderly and infirm, and the care in many nursing homes reflects this.

But we are not talking about nursing home care as it exists today but what will be in place down the road.  Many of the posters here are pretty young and have many, many years to go before this will become an issue.  And I will state this again because sometimes people need to hear it twice, younger people have many, many more food issues to deal with than the elderly today.  They will have to be addressed.  As for family member's of those in a nursing home, if staff do not respond to their requests for safe meals, it only takes a letter from a good attorney to right that. You have to be pleasantly forceful and yes, results can be had if you go through the correct channels. Some people are not inclined to do so because it can be intimidating.

 

The other thing that can be done is to plan ahead correctly. It is not inevitable that people will end up in a nursing home.  You have the option of home care, if you look into options at a young enough age.These things are as important as retirement planning and if someone does not do their homework earlier, they may have serious problems but it isn't inevitable they will.  Questore, in the above post, mentioned a few things that serve as protections against the state coming in and telling people where they will go and how they are treated.

 

I have a lot of experience with nursing homes myself, in that many of my elderly relatives fell under my husband's and my care. We don't have kids so we gladly take care of the old folks in the family.  We have been frequent visitor's to nursing homes for the past 20 years on a regular basis.  There were times when things weren't right but that did not last long because I don't take anyone's BS. It can be a simple as that. People in life, no matter what the circumstances, know who they can ignore and who they can't. But to tell people that they need an endo because they might be in a nursing home one day is ridiculous.  There are many docs who will rightly diagnose on blood work and other criteria and those are the ones I would want to have anyway. Not someone playing hostage with my health.

[across]

But we are not talking about nursing home care as it exists today but what will be in place down the road.  Many of the posters here are pretty young and have many, many years to go before this will become an issue.  And I will state this again because sometimes people need to hear it twice, younger people have many, many more food issues to deal with than the elderly today.  They will have to be addressed.  As for family member's of those in a nursing home, if staff do not respond to their requests for safe meals, it only takes a letter from a good attorney to right that. You have to be pleasantly forceful and yes, results can be had if you go through the correct channels. Some people are not inclined to do so because it can be intimidating.

 

The other thing that can be done is to plan ahead correctly. It is not inevitable that people will end up in a nursing home.  You have the option of home care, if you look into options at a young enough age.These things are as important as retirement planning and if someone does not do their homework earlier, they may have serious problems but it isn't inevitable they will.  Questore, in the above post, mentioned a few things that serve as protections against the state coming in and telling people where they will go and how they are treated.

 

I have a lot of experience with nursing homes myself, in that many of my elderly relatives fell under my husband's and my care. We don't have kids so we gladly take care of the old folks in the family.  We have been frequent visitor's to nursing homes for the past 20 years on a regular basis.  There were times when things weren't right but that did not last long because I don't take anyone's BS. It can be a simple as that. People in life, no matter what the circumstances, know who they can ignore and who they can't. But to tell people that they need an endo because they might be in a nursing home one day is ridiculous.  There are many docs who will rightly diagnose on blood work and other criteria and those are the ones I would want to have anyway. Not someone playing hostage with my health.

If you reread my posts, you'll see that I never said anywhere that someone needs an endoscopy because they might be in a nursing home someday. I said I would want an official diagnosis in case I was ever in a nursing home someday. Some doctors will do that based on blood tests. Mine won't, that is why I am choosing to do endoscopy. I never said anyone else should do so -- especially if they are able to obtain an official diagnosis without a biopsy.

 

As far as nursing home care goes, you have your opinion, and I have mine. You believe that nursing home care will change when all the younger people get older and start having problems. I believe it won't. If they aren't taking people with diabetes seriously now (of whom there are an epidemic in nursing homes now), I doubt they will take food problems into consideration more later.

 

As far as  the issue of this being a consideration only for much older people, some of the people I see in nursing homes are as young as their early 60's and are there due to stroke. One I used to see was in his early 30's. If I recall correctly, I believe he was there due to complications of diabetes.  A person of any age could wind up needing nursing care due to a car wreck or other accident.

 

I'm all for people preparing properly. However, I work with people everyday who weren't able to or didn't prepare in such a way as to allow them to stay at home. You're looking at best case scenario -- which is, of course fine. I'm looking at what I see on a daily basis and making my decisions based on that.

 

Regarding advocacy, I do it regularly, and my husband and I have even gone to court in attempting to look after someone's welfare. Family advocacy is great if it is possible. Oftentimes, though, I find it is not. The family members are either elderly themselves and unable to pursue it adequately, are uninvolved, are not sufficiently informed, don't have adequate financial resources, or are intimidated by the whole situation. 

 

I don't think it's ridiculous that I express what I have learned from years of experience dealing with this on nearly a daily basis -- especially given that the OP was asking for opinions. I may be in the various nursing homes only 8 hours a week at present, but I spent the past few years spending about 20-30 hours a week in them. I don't begrudge you your optimism about nursing care, but I don't share it, and I don't think there is anything wrong with either of us expressing our opinions about this.

[KCG91]

Just reporting back on my experience - I saw a new GP today, having moved back home, and explained my situation re. not having a biopsy. She took one look at my ttg IgA levels for September and January and said that I was absolutely right to refuse a challenge and biopsy at four months gluten-free. She's re-running a load of tests (coeliac, iron, bone density, inflammatory stuff) which she is then going to send off to the gastro unit at the hospital explaining that they are to treat me as diagnosed coeliac based on blood tests and response to diet - so I will get my follow ups, dietician meeting (for what it might be worth) and prescriptions etc without having a biopsy. Happy days!

[Gemini]

That is great!  Sounds like you found an enlightened doctor.  Hold onto her because they aren't as common as the biopsy driven crowd. 

[across]

What great news! I'm so glad you found a good doc!