Why Do Some People Feel They *must* Have An Endoscopy?

[Katrala]

When I first joined these forums (with a positive blood test and a biopsy scheduled) I was told that I didn't have to do the biopsy. Knowing much less than I do now, I seriously considered the option.

In retrospect, I am very glad I didn't take the advice given to me.

There are pros and cons to having it done (although I do personally feel the pros outweigh the cons.)

[Jestgar]

I see it as a personal decision, rather than a medical one (in the US where a diagnosis doesn't get you any discounts). I really don't care what someone else's opinion of my intestine is.....

[lucky28]

@Jestgar

In the US you don't get a discount but you do get a tax write-off for the difference between the price of "regular" food and it's gluten-free substitute with an "official" diagnosis (biopsy).

[love2travel]

love2travel,

I think you will be the best - best gluten free cook/chef we've ever had on board our crazy cruise ship / tv chef program or something. We NEED you! All the different cuisines you can help us with (gluten-free), substitute (gluten-free) ingredients for our favourite dishes. I reckon that you will be my "Jamie Oliver".

That is a huge compliment - thank you so much! I have actually eaten at one of Jamie Oliver's restaurants and remember vividly what we had. My favourite item was meatballs stuffed with foie gras. There were also several little wooden salt cellars on the table holding various types of flaked finishing salts - the beginnings of my passion for finishing salts! That was several years ago but the memory is engrained in me.

Although I was shocked by my diagnosis I am thankful for it for many reasons. I believe it has saved my life. Not only that but it has forced me to do even more creative cooking and baking with intriguing ingredients! And it is cool for culinary students to see that it CAN be done and done well without sacrificing flavour one little bit. Some cooking classes I do are still for those without dietary restrictions such as cooking lamb, making vinaigrettes - things that are naturally gluten free anyway.

[Jestgar]

@Jestgar

In the US you don't get a discount but you do get a tax write-off for the difference between the price of "regular" food and it's gluten-free substitute with an "official" diagnosis (biopsy).

Only if your medical expenses are more than 7.5% of your AGI. For someone with an AGI of $40,000, this is $3000. At $2 per loaf difference, that's a lot of Udi's.

[beebs]

I admit, I find it even more interesting when people go gluten free with no testing whatsoever. What if it's something worse? What if you have done damage inside already, but you won't know because you haven't had any testing? Why would even go gluten free if you don't have to? Apparently 9 out of 10 people on gluten free diets do not have celiac or gluten intolerance - what the heck is that about??

[pricklypear1971]

I admit, I find it even more interesting when people go gluten free with no testing whatsoever. What if it's something worse? What if you have done damage inside already, but you won't know because you haven't had any testing? Why would even go gluten free if you don't have to? Apparently 9 out of 10 people on gluten free diets do not have celiac or gluten intolerance - what the heck is that about??

I went gluten-free without antibody testing because they (doctors) were trying anything to get rid of my rash. The suggestion was based on my already dx'ed Hashimotos and the success many patients have going gluten-free. In addition to the rash I had unresolved thyroid issues that going gluten-free is known to resolve. While the link between Hashis and gluten is getting better-known it is a GLUTEN SENSITIVITY link, not Celiac. If I would have known I was at higher risk for Celiac and that I couldn't test for it later I would have asked for the test....but my doc didn't think I was Celiac...she didn't recognize the rash as DH but did think there was a link between gluten and my thyroid.

I did have other blood tests which correlate with Celiac, and my rash (after removing steroids) is pretty classic iodone-responsive DH.

Would I argue if I had more problems and they wanted to scope? No. But in retrospect my blood work was very likely to be negative given the DH and steroids. Same with an endo....

[mushroom]

I admit, I find it even more interesting when people go gluten free with no testing whatsoever. What if it's something worse? What if you have done damage inside already, but you won't know because you haven't had any testing? Why would even go gluten free if you don't have to? Apparently 9 out of 10 people on gluten free diets do not have celiac or gluten intolerance - what the heck is that about??

I wasn't even aware of celiac disease (or testing for it) when I stopped eating gluten. I stopped because I knew someone with ankylosing spondylitis (autoimmune rheumatic disease) who treated his disease with a gluten free diet and I thought it might help mine. I had no idea that it would get rid of the digestive symptoms at the same time

[Chad Sines]

We have people on these boards (from reading other threads. not read this one all the way yet) who think you are not a real celiac unless you have a scope done and these are people who should get it. If we cannot get it, then how can doctors.

[beebs]

But that is different - you guys get sick on gluten! I mean the people who do it because the celebs in hollywood are doing it! I don't mean you guys!!

[lucylooo]

Not to be rude but I really disagree with you, I get what your saying why does it matter if you feel better BUT alot of people wont be motivated to go gluten free unless they no its damaging there body. Also for a lot of people it is stressful and hard going gluten free, people like me who don't cook much and don't have alot of money its really hard changing a diet, as I normal buy something cheap and easy. Some people have the time the money and the knowledge to do it fine but alot don't.

The most important reason to get a 100% Diagnosis is because they wont get the help they need from they doctors - My sister had celiac for a very long time without knowing and was so poorly in the end it was horrible, as the doctors kept turning her away saying she is fine! Anyway in the end she went to hospital got tested and then had the Endoscopy they saw how much damage it had done, and by having the endoscopy she gets help with her food, money off etc, she had a dietician to start with, she also got tested for other things, found out she has a bone diseases because of this. She was so poorly and didnt want to endoscopy she was just going to go gluten free, but she is glad she had it done as she would not of known about the other things it caused and receives a lot more help!

And I would just generally want to know if i had it

[mushroom]

Part of the reason so many do not bother with pushing for diagnosis:

1. Testing is only 70-80% reliable, blood or biopsy

2. Many doctors will not do the testing even when specifically asked to by the patient

3. Many doctors do not know how to read the reports and will falsely tell the patient their results were negative

4. Many gastroenterologists do not take enough biopsy samples

5. Many doctors are totally unfamiliar with celiac symptoms and nutrition in general

6. Which means many doctors do not do the testing for nutrient deficiencies and bone loss and hypothyroidism, and their patients have to come here to find out what to do about their gluten intolerance.

[lucky28]

@J true! You got me! I have only been diagnosed since august and am so busy trying to get everything together I hadn't done the math! (It's always been my downfall! Lol) I guess I'm gonna have to eat a LOT more Udi's and kinn....(sp?)next year!

[tennisman]

Part of the reason so many do not bother with pushing for diagnosis:

1. Testing is only 70-80% reliable, blood or biopsy

2. Many doctors will not do the testing even when specifically asked to by the patient

3. Many doctors do not know how to read the reports and will falsely tell the patient their results were negative

4. Many gastroenterologists do not take enough biopsy samples

5. Many doctors are totally unfamiliar with celiac symptoms and nutrition in general

6. Which means many doctors do not do the testing for nutrient deficiencies and bone loss and hypothyroidism, and their patients have to come here to find out what to do about their gluten intolerance.

My old doctor is obsessed with Endoscopy's , on his website he mentions how he has done over 5000 Endoscopy's ! After I had my 1st Endoscopy every time I went to see my doctor for check ups . He always said I want to do another Endoscopy . I really didn't want another Endoscopy but really regret not having a 2nd one now . I did eventually have another Endoscopy last year which showed the villi had all healed.

I think in england the doctors maybe enjoy Endoscopy's more as my Mum who also has celiac disease needed 2 Endoscopy's . Also in the uk if you go on the nhs you don't pay anything to have the tests . I also think maybe the doctors get paid more when they do Endoscopy's

[beebs]

They do two here too (Aus). One to confirm diagnosis and one to check that the villi has healed.

[Di2011]

If people in Hollywood stop eating gluten for good reason then good on them - it will probably make them feel good/better. If they do it to get or stay at size 0 then there is little our opinions or experiences can do for them.

I consider myself lucky that I worked at a bakery for 9 months. Sick and DH head to toe I became unemployed - so diagnosis is plain and simple not an option for me. I don't care about technicalities and as a financially poor but educated person I find it distressing to think about how many (think about it .. how many??) people are suffering due to gluten and/or misdiagnosis because they simply can't get official confirmation due to circumstances or finances or as a result of medical incompetence.

So if you have the funds you might get a diagnosis, maybe. If you don't have the funds, you don't get a diagnosis.

I might "need" a diagnosis at some stage (or will I ? - I'm considering moving GP next time I visit and telling them I am diagnosed with DH.. could be controversial but worth me thinking about it in the meantime) but for now I am happy and healing gluten-free. No more bloating, irregular and distressing GI issues, brain fog gone, and about a dozen+ other things going or gone - most of which have cleared unexpectedly and which I'd thought due to my laziness (was I?) and poor diet (it actually wasn't bad).

Lets hope our kids/grandkids don't have this conversation next decade.

[Katrala]

Part of the reason so many do not bother with pushing for diagnosis:

1. Testing is only 70-80% reliable, blood or biopsy

2. Many doctors will not do the testing even when specifically asked to by the patient

3. Many doctors do not know how to read the reports and will falsely tell the patient their results were negative

4. Many gastroenterologists do not take enough biopsy samples

5. Many doctors are totally unfamiliar with celiac symptoms and nutrition in general

6. Which means many doctors do not do the testing for nutrient deficiencies and bone loss and hypothyroidism, and their patients have to come here to find out what to do about their gluten intolerance.

I understand these frustrations.

While I know that there are many variables involved with finding doctors (including insurance, location, etc.) I think it's important to share which doctors do a good job when it comes to celiac disease and NCGI and then guide people towards those doctors.

I don't live in a big city, but both my PCP and my GI had their eyes open for celiac (I had no idea what it even was.) For a PCP - especially one who is in his 70s - to suspect celiac seems the exception from other people's experiences. My GI was actually a little put out when I first came to him that my PCP hadn't done a celiac panel before referring me (he thought one had already been done and began looking for Crohn's.) My GI's course of treatment seemed to be along the lines of "rule out celiac, then we'll look for other causes."

Yes, I consider myself lucky to have not one, but two doctors suspect celiac. I did get unlucky when I first became sick and my PCP was out of town and I had to see another doctor in the group (three times) who insinuated that things weren't really a big deal and it was likely just stress, but he's also known for having a bit of a God complex (his last name is Lord, which apparently didn't help matters.)

[Marilyn R]

I looked in the eyes of a woman is her late 60's several months ago. She worked in medical records and I needed medical records.

I saw that "dead" look I used to see in the mirror. I asked her if she had IBS, and she asked me how I knew. I talked her into going gluten-free. She called me a week later and told me that her GI told her she didn't have celiac disease and it would be crazy for her to continue gluten-free.

In three weeks gluten-free, she was able to do things she hadn't been able to do for quite awhile: grocery shop, attend church, cook, really basic things. I suggested that she tell the GI to think about how she'd been going to him for several years and all he came up with lactose intolerance and IBS, now she had no IBS.

Months have gone by.

I'm still in contact with her, and she says she can tolerate gluten in small doses now. Like a slice of Italian Bread once a week.

I saw her last week and she had deep, dark circles under her eyes. I didn't say a word about gluten. You do what you can. She got out of a crisis, maybe she can tolerate gluten and the gastro was right. Maybe not.

But there are so many other foods, I don't get it either.

My mom was dx with celiac disease and always blamed her D on the lettuce, and said the doctors were wrong about wheat. She'd wheel into BK in her wheelchair (couldn't walk anymore) and order a burger without lettuce.

[mushroom]

My mom was dx with celiac disease and always blamed her D on the lettuce, and said the doctors were wrong about wheat. She'd wheel into BK in her wheelchair (couldn't walk anymore) and order a burger without lettuce.

Oh Marilyn! W - O - W!!!

If is so sad it almost makes me laugh. My sister-in-denial can't eat rocket. Nothing else bothers her, mind you.

[Chad Sines]

But what is the point of even a diagnosis for anything other than self confirmation? What is the doctor going to do for you?...recommend a gluten-free diet. That is all the support they will give because that is all they can do. Unless I am missing something major there is really no need or use in convincing the physician as there is nothing they can do for you.

[Katrala]

Unless I am missing something major there is really no need or use in convincing the physician as there is nothing they can do for you.

Yet.

(hopefully)

If something does come out, I want to be on my doctor's radar as someone who could benefit from it.

[beebs]

Am I the only one concerned with other autoimmune diseases and the higher risk of cancer? Before people go nah not concerned, please head to the related disorders section and see how many people here have not just celiac but other autoimmune diesease. And many feel that they were triggered by eating gluten as celiacs (which alot of times they are). My Grandad was diagnosed bowel cancer (which eventually killed him) in his 40s after a lifetime of upset tummy.

There are so many symptoms related to Gluten that there are often other things it could potentially be. Lets face it - a diagnosis is often not just - eat gluten-free for the rest of your life, often they check for damage (cancer), other autoimmune disease etc.

I read about a mother who was SURE her child was Celiac wouldn't believe that it wasn't, stopped her son going to the Dr and put her son gluten-free, her son seemed to improve on the gluten-free diet, but things didn't resolved completely, she kept giving it more time, and after 4 years her son was still sick so she took him back to the Dr finally diagnosed with crohn's and the amount of irreversible damage that was done in that time was, well - needless and in the end it wasn't the best idea to self diagnose.

Yes- things need to change, Yes Celiac/NCGI, and gluten sensitivity need far more recognition, but I don't believe self diagnosis is the way to go, also -unless you really can't avoid it - if all else fails then go gluten-free if it helps then - *fantastic* but if you have been through the testing then you *know* that it isn't anything else. - if we all just self diagnose - how is anything in the medical profession EVER going to change?? I went to a GI - I know my problem is gluten - he didn't agree, so I got a new one who is an expert in the field.

I believe this is a very different situation than in America - as we can choose our specialists here and we have medicare, which means we are only out of pocket 10-20%. But maybe a Gluten free revolution needs to happen - some petitions or something. A group willing to fight for it.

[pricklypear1971]

You know, I wonder what WILL happen when there is an rx treatment.

Will doctors suddenly start dx'ing? I wonder how many people will come out of the woodwork who have been gluten-free but never got an official dx either by chance, choice, or because of negative testing.

Will the criteria for dx or treatment be loosened??

Will be interesting to see.

[Chad Sines]

when and if there is an rx that really works, then it makes sense to get tested. There is no radar to be on at the moment. all people are doing is paying a GI to go in and say "yep, you still got celiac..pay $200..eat gluten-free..come back in 4 months" Chances are slim that there will be a treatment since most will prefer the gluten-free diet over something that alters you immune system. Anyone ever seen people taking meds for autoimmune disorders? often it isn't pretty. They would gladly give it up for a dietary change.

Until there is an rx...makes no sense at all to spend the money (often a lot), have to suffer through tests and if you happen to get one single negative blood test or biopsy, then it is over in their mind. You do not have it..ever..you got IBS. live with it and suck it up. Then 10 years later you might happen to stumble on it yourself and wonder why you had to be so sick for so long simply to appease some doctor or people who refuse to allow you into the celiac sanctum without the almighty biopsy.

Looking at what I (and my insurance) have spent in the last 20 years on GI stuff is easily near $20K or more (probably a lot more). Had someone said try to eat gluten-free 20 years ago and if that works you have celiac, i would have a lot more money, could have got a lot more done. Had I continued to belief the crappy lie of the biopsy message, i would still be suffering or dead now. Thank God there are smart people out there who care more about healing than label defining.

If gluten free eating "cures" you, then you are celiac. period. If you do not like me to say that..tough. This is just a tired debate of biopsy is the only true celiac sign.

[Chad Sines]

Am I the only one concerned with other autoimmune diseases and the higher risk of cancer? Before people go nah not concerned, please head to the related disorders section and see how many people here have not just celiac but other autoimmune diesease. And many feel that they were triggered by eating gluten as celiacs (which alot of times they are). My Grandad was diagnosed bowel cancer (which eventually killed him) in his 40s after a lifetime of upset tummy.

There are so many symptoms related to Gluten that there are often other things it could potentially be. Lets face it - a diagnosis is often not just - eat gluten-free for the rest of your life, often they check for damage (cancer), other autoimmune disease etc.

I read about a mother who was SURE her child was Celiac wouldn't believe that it wasn't, stopped her son going to the Dr and put her son gluten-free, her son seemed to improve on the gluten-free diet, but things didn't resolved completely, she kept giving it more time, and after 4 years her son was still sick so she took him back to the Dr finally diagnosed with crohn's and the amount of irreversible damage that was done in that time was, well - needless and in the end it wasn't the best idea to self diagnose.

Yes- things need to change, Yes Celiac/NCGI, and gluten sensitivity need far more recognition, but I don't believe self diagnosis is the way to go, also -unless you really can't avoid it - if all else fails then go gluten-free if it helps then - *fantastic* but if you have been through the testing then you *know* that it isn't anything else. - if we all just self diagnose - how is anything in the medical profession EVER going to change?? I went to a GI - I know my problem is gluten - he didn't agree, so I got a new one who is an expert in the field.

I believe this is a very different situation than in America - as we can choose our specialists here and we have medicare, which means we are only out of pocket 10-20%. But maybe a Gluten free revolution needs to happen - some petitions or something. A group willing to fight for it.

One thing i would add here is that most do not truly self-diagnose. They have been to many GIs and other doctors along the way who ruled out celiac and tested for other things. Their final diagnosis is the self diagnosis after the GI says IBS and is content to let the patient suffer the rest of their life. I was at GIs from age 14 to age 36 and none could figure it out after blood tests and biopsies. Now they say "yeah, doctors often miss celiac. Good thing YOU figured it out."