Formal Diagnosis: Is It Worth It?

[Donovan]

Hi, I am a 52 year man in San Anselmo, Ca. recently diagnosed with celiac with a blood test. I had been told I had GERD when I first started having terrible stomach problems about three years ago. When they told me I had celiac disease 4 weeks ago, I found out about it and stopped eating gluten right away. Within 2 weeks, my digestion greatly improved and I noticed my hair had become thicker and much less dry and frazzled as it has been the last few years. My sore hands, fatigue and mood have improved so suddenly, it seems like a gift from heaven to at last know what has been troubling me.

And after being on the diet for three weeks I accidently " glutened myself"a few days ago.

I stupidly drank a cup of "Roastaroma" tea, I wasn't really tuning into the fact that barley or tea for that matter could set me off. I had to go running for the activated charcoal. I am still kind of hung over from it.

This is why I was surprised, when I went today to get my endoscopy, that the G I doctor did not want to do the endoscopy because I had not been eating enough gluten and for me to have a successful biopsy (test) I would need to go back to eating gluten for 30 days and then we could reschedule. I was stunned.

I told them that this was not going to happen. The Doctor pressed her case, saying that there are advantages to having a "gold standard diagnosis". She didn't really elaborate on that. I told I had made my peace with giving up gluten and the episode with the tea convinced me I was extremely sensitive to it. She said an unconfirmed diagnosis is fine with her. So it didn't happen. I'm fine with that.

Apart from my not getting the test and my doctors wasting my time, Could anyone elaborate on what some of the advantages might be of having the disease diagnosed by biopsy as opposed to the blood test. It seems to me whoever says what, I will always be, Gluten free.

Thanks, Donovan

[Katie B]

Hi Donovan,

Glad to hear you've finally got some resolution to your symptoms!

I'm in a similar situation - whether I'm gluten intolerant or have celiac I'm staying away from it altogether. I haven't been able to get a solid diagnosis and my doctors are okay with that. The only thing to watch out for would be celiac disease-related risk factors like checking your bone density and B12 levels. Others could probably advise more on this but if you do some research it's good to be aware of what other tests would be performed if you were officially declared a celiac. It might also be worth getting a biopsy at some point in the future just to make sure you're not accidentally ingesting gluten, however, from the sounds of it it seems like you'd know.

Good luck and you're not alone!

[Katie B]

p.s. I'm currently going through the gene test through Enterolab but I've heard that you can get a false negative so we'll see how it goes!

[GlutenFreeManna]

Congratulations--You've been diagnosed! You have a positive blood test and a positive reaction to the diet and a noticeable reaction when challenged with gluten. That should be enough to diagnose and it's more than many on this board have. Your doctor was right to tell you that you need to be on gluten in order to have an accurate biopsy, however they should not have pressed you to challenge for further testing purposes after your experience with the tea. The blood test is very rarely a false positive when positive. False negatives are common, but false positives are not. So they should have "diagnosed" you on that and your dietary reactions. Yes they do often like to follow up with a biopsy, but IMO it's unnecessary in a case like yours. Get a copy of all your test records and if your PCP doctor refuses to treat you as if you have celiac, then find another doctor that will. As far as advantages go...well there is no other "treatment" besides the diet. However, it's nice to have a knowledgeable doctor that can monitor things like your vitamin levels and check you for other illnesses that are common in people with celiac.

[Skylark]

Heck, you're more diagnosed than I am. I did an elimination diet having no idea gluten was going to turn out to be the problem.

None of my doctors has pressed me to go through a challenge and diagnosis as long as I'm willing to eat carefully as if I'm celiac. Gluten makes me too sick to be interested in doing otherwise. They're willing enough to check nutrient levels and for females checking bone density is the standard of care anyway.

[ravenwoodglass]

I agree you are already diagnosed. Make sure your PCP does vitamin and minerals levels and you can get another celiac panel done in 6 months or so to see if your antibodies are going down. You should also get a scan for osteoporosis, although this test is primarily done on women men with celiac are at risk for bone loss also. If you do show signs of osteoporosis or osteopenia, it's precursor increase your calcium and vit D as that will help it and should be the first step before you take any of the bone building drugs.

If you continue to have issues or other ones appear you can always go back to the GI and get scoped in case anything else is going on. Being gluten free will not effect testing for other problems.

[Jestgar]

If the GI couldn't give you reasons for having the biopsy, then why worry about it? I think docs get into the checklist mode of what should be done and stop thinking about why they should be doing it. If you aren't eating gluten, what will having a biopsy do for you? Any associated issues can be monitored without you eating gluten, and you wouldn't get different medical treatment if you had the biopsy diagnosis in your chart, so I say skip it.

[tarnalberry]

If you ever need to make use of the disabilities act, a documented diagnosis is worthwhile.

If you want to get your children tested based on family history, a documented diagnosis is helpful.

If you want to monitor celiac antibody blood levels regularly, a documented diagnosis is useful.

But those are all if's, and many of us here are happy without a "formal" diagnosis. (If you see the doc again, I'd ask her to elaborate on those supposed "advantages".)

[sa1937]

The Doctor pressed her case, saying that there are advantages to having a "gold standard diagnosis". She didn't really elaborate on that. I told I had made my peace with giving up gluten and the episode with the tea convinced me I was extremely sensitive to it. She said an unconfirmed diagnosis is fine with her. So it didn't happen. I'm fine with that.

Apart from my not getting the test and my doctors wasting my time, Could anyone elaborate on what some of the advantages might be of having the disease diagnosed by biopsy as opposed to the blood test. It seems to me whoever says what, I will always be, Gluten free.

Thanks, Donovan

My PCP was ready to diagnose me after getting very positive results on my celiac panel. I should have taken him up on it and not requested to follow up with a GI doc. (My biopsy was positive...not a surprise to me). But, I also have a daughter who has problems with gluten (she's pretty much eating gluten free but not always) and also is hypo-thyroid. So I felt I should pursue it to try and get a "gold standard diagnosis" for her sake. She's in grad school and took some summer classes so has not done a gluten challenge...I can't imagine having to go through that and then not knowing if she'd get a definitive diagnosis. I wish she'd just go completely gluten free and never look back.

The only advantage I can see in getting diagnosed by the "gold standard" is if someone needs that "official" diagnosis to go gluten free and not cheat. And even then, biopsies can be negative. Or if someone lives in a country where there are allowances for gluten free foods.

[TeacherInTexas]

I think there are some gentic tests out there......but since you seem to want 100% proof...I'm not sure if most docs would not roll their eyes at it....and say that most things about genetics have still yet to be uncovered.

I did the stool test.....I'd advise you to not waste 5 grand on some meaningless surgery and risk death from the numerous infections in hospitals.....especially when you can make a number 2# deposit in a plastic container.....freeze it.....then send it on its way.

.....The very fact that your doc suggested a biopsy tells me that he hasn't been doing his homework on the current research of gluten intolerance and subclinical gluten intolerance......

subclinical.....I'm not even sure would show up on a biospy. Don't waste your money and endanger your life to get that almighy paper. Even when you have it.....my docs had no clue as to what to do. One even said that they didn't reccomend the diet becasue...."it was too hard."

www.enterlab.com does stool testing.....antibodies show up faster in the stool. (No, I don't know how much gluten it would take to get a positive result)

70% of the immune system is in the intestines......most docs still don't quite get it. Mine got mad that I even showed them the positive result and said "I went out of the medical system." A complete joke since Dr. Kenneth Fine has a heck of a lot more credentials than most docs......and the regualr medical system.......failed me........failed thousands upon thousands.....if they didn't......thousands upon thousands wouldn't be asking advice from other fellow sufferers on the net....

I thought their motto was "DO NO HARM"

I think 2 others labs also did stool testing when I got tested years ago....but I like that Dr. Kenneth Fine made his lab because he was so angry at the other docs for doing biopsies and not diagnosing people or doing those old blood tests which didn't really work since most of the immune system is in the intestines.

No, you don't need your doctor to write off on testing.......you list your symptoms/history.......and they send you a test kit.

FYI, Anytime you want to get tested for something......you need not worry about begging doctors anymore....if you know what you want to test for.....you buy the test online.....a doc who knows where approves it.....and you select a labcorp testing place to get the blood drawn. They email you the requisition form and after you give the blood....they email within about 3 days. It clearly marks it as abnormal if it is out of range (which you can talk with a doc abut if you REALLY want to:)

FYI, there has been too many blood tests that have been inaccurate in the past.......stool testing is liklely the safest route.....

www.directlabs.com

labsmd.com

And for anyone that will be angry that I gave links to websites where one can actually buy labs on the internet (that their almighty doctor did not think to suggest or was not willing to approve).....then you likely haven't gone through over a dozen doctors like me....haven't been told you were crazy countless times.....haven't been offered depression meds from a doc that decided to write you off since he was too incompetent to actually figure out what was wrong......I cried on that visit......numb 70% of my body....muscles were atrophying.....had left foot drag......and he was offering me depression meds.....

Even if you disregard what I said.....please look at the info on enterolab.....and don't waste your time trying to educate docs.......life is too short.

And please understand that by the time most people figure out that they are gluten intolerant.....other autoimmune diseases have been triggered......myasthenia gravis.....diabetes......the list goes on and on.....

"DO NO HARM".......yeah right

Hi, I am a 52 year man in San Anselmo, Ca. recently diagnosed with celiac with a blood test. I had been told I had GERD when I first started having terrible stomach problems about three years ago. When they told me I had celiac disease 4 weeks ago, I found out about it and stopped eating gluten right away. Within 2 weeks, my digestion greatly improved and I noticed my hair had become thicker and much less dry and frazzled as it has been the last few years. My sore hands, fatigue and mood have improved so suddenly, it seems like a gift from heaven to at last know what has been troubling me.

And after being on the diet for three weeks I accidently " glutened myself"a few days ago.

I stupidly drank a cup of "Roastaroma" tea, I wasn't really tuning into the fact that barley or tea for that matter could set me off. I had to go running for the activated charcoal. I am still kind of hung over from it.

This is why I was surprised, when I went today to get my endoscopy, that the G I doctor did not want to do the endoscopy because I had not been eating enough gluten and for me to have a successful biopsy (test) I would need to go back to eating gluten for 30 days and then we could reschedule. I was stunned.

I told them that this was not going to happen. The Doctor pressed her case, saying that there are advantages to having a "gold standard diagnosis". She didn't really elaborate on that. I told I had made my peace with giving up gluten and the episode with the tea convinced me I was extremely sensitive to it. She said an unconfirmed diagnosis is fine with her. So it didn't happen. I'm fine with that.

Apart from my not getting the test and my doctors wasting my time, Could anyone elaborate on what some of the advantages might be of having the disease diagnosed by biopsy as opposed to the blood test. It seems to me whoever says what, I will always be, Gluten free.

Thanks, Donovan

[srall]

This question has been on my mind too. I just joined this board and wanted to ask this question, but assumed that it had already been posted by somebody else. In trying to make sense of all of this on my own, I saw an allergist in May not realizing there was a difference between being allergic to wheat and having an auto immune response. She did test me for Celiac's (blood test) which came up negative but I'd been wheat free for several weeks. She wasn't concerned about testing further, and advised me to stay off gluten and dairy since I felt better. My SIL who is also an allergist in adamant about me getting tested (for the same reasons many others have listed, and especially since my mom who is a dietician and has never been overweight has been diagnosed type 2 diabetes. She can't eat wheat either.)

I'm not really interested in eating gluten for several days/weeks in order to get an accurate test. I didn't realize the biopsy was so invasive. But there are all these other issues too including joint pain that I'm still trying to resolve.

Hopefully I haven't hijacked this post too much. I'm wondering if it's worth finding a GI even though I've sort of taken control of my diet and health, and at this point am not too interested in having a biopsy done.

[Bennie]

Where I live, a benefit of having medical proof that you are celiac is that you can get money back from the government for gluten-free food that you have bought, if you save your receipts of course. Maybe you have something like that in your area?

[dilettantesteph]

I came to the GI already gluten free. I had been so sick before that they considered me diagnosed by response to diet. They even recommended against a gluten challenge followed by further testing. "Do no harm" - I think that some doctors may have forgotten their Hippocratic Oath.

[mamabear]

Worth it for the previous mentioned reasons of following specific lab tests that might be a creative stretch for your PCP to make the insurance company pay; worth it if you need the enforced mentality to stay on the diet; worth it if you need that for family members.

Not worth it to get better. Too many doctors keep a blind eye to the variations and subtleties of gluten sensitivity to full blown celiac disease and do not advise negative- tested patients who fit the diagnosis to go gluten-free ! Sorry ,big run on sentence there. There is no harm there to advise the diet, especially if they've done everything anyway and still can't get a gold standard. By that time, they should have eliminated anything else, so where's the foul???

[kellykay]

I am pondering this question myself... and part of me thinks a OFFICIAL DX is not worth the pain and torture to get it My blood panel was negative...

I have some very unexplained health issues (muscle weakness) and I can't help but wonder if it is celiac causes it.. and all my drs are in Diagnosis mode.... its so confusing...

[Bennie]

Have any of you ever tried acupuncture to relieve symptoms (as a temporary measure)?

It was an acupuncturist that noticed things relating to my digestion that no western medicine doctor had.

[boomobile]

Get the book "Healthier without Wheat" by Dr. Stephen Wangen. It goes through all the different types of tests that you can do. For me testing is not an option. I don't have the money, and when I did have insurance, it wasn't covered. Not a necessary test they say...

-boomobile

[Kay DH]

I am pondering this question myself... and part of me thinks a OFFICIAL DX is not worth the pain and torture to get it My blood panel was negative...

I have some very unexplained health issues (muscle weakness) and I can't help but wonder if it is celiac causes it.. and all my drs are in Diagnosis mode.... its so confusing...

Muscle weakness, at least if it is associated with peripheral neuropathy, is common with gluten intolerance. Nerves, particularly in your extremities can be affected with tingling, muscle weakness, and sometimes pain. By the way, I posted today my experiences with doctors and trying to get tested for Celiac under "Top Five Reasons to Get a New Doctor" . In case you decide to get a biopsy. It is just as good knowing but not having the test results.

[kellykay]

Muscle weakness, at least if it is associated with peripheral neuropathy, is common with gluten intolerance. Nerves, particularly in your extremities can be affected with tingling, muscle weakness, and sometimes pain.

Not a peripheral neuropathy issue.. that would be too simple... I am trying to get a hold of my blood tests.. I had a celiac panel done in april ... never heard anything so i figured it was negative.. might be a good idea to make sure... it wouldn't be the first time something was over looked..

[THernandez]

So what I want to know, is if you get the positive blood test for celiac and the gluten-free diet resolves all symptoms, what else COULD it be that needs to be ruled out with a biopsy? In other words, is there any chance at all that my son doesn't have celiac and it was all just coincidence? I haven't been able to get an answer to what other possible illness could cause all the symptoms AND a positive blood test. If there is nothing else, why is a biopsy needed?

When I asked the pediatric GI why I should put my son through that she said, "So you'd have a definitive diagnosis which you need to write your food off your taxes." That seemed a rather lame reason to me to put my kid through hell again. Does anyone else have a doctor that gave a better reason?

[kareng]

I did an endo & colonoscopy to make sure there wasn't anything else wrong. And to see how bad the damage is. Not sure this applies to kids. If your doc is willing to dx based on blood tests and response to diet, as some do, that should be good enough. With a kiddo, you may need an official dx to get schools to deal with it. You may need a dx to get follow- up testing like vitamin absorption, retake of the blood work to see if the numbers have gone down. A doctors note so you can bring your own food into sports stadiums, get out of paying for the before football game dinners, etc.

[Bennie]

So what I want to know, is if you get the positive blood test for celiac and the gluten-free diet resolves all symptoms, what else COULD it be that needs to be ruled out with a biopsy? In other words, is there any chance at all that my son doesn't have celiac and it was all just coincidence? I haven't been able to get an answer to what other possible illness could cause all the symptoms AND a positive blood test. If there is nothing else, why is a biopsy needed?

When I asked the pediatric GI why I should put my son through that she said, "So you'd have a definitive diagnosis which you need to write your food off your taxes." That seemed a rather lame reason to me to put my kid through hell again. Does anyone else have a doctor that gave a better reason?

The biopsy is more accurate for diagnosing celiac disease than the blood test and it also gives the doctor and patient a better idea of how much damage has been done to the intestine (villi) due to the consumption of gluten.

That being said, if little damage is visible at the time of the biopsy, that doesn't mean that six months down the road that the damage to the villi in the intestine may not be much worse. So at the same time this procedure can be about "luck" and timing...

I suppose a good question to ask the GI or whoever you are speaking with, If it's not celiac disease than what else could damage the villi in my sons intestine in the same way? (this is if he has had the biopsy done and damage to the villi is very visable)

Does your sons symptoms disappear when he is completely off gluten?

[ravenwoodglass]

So what I want to know, is if you get the positive blood test for celiac and the gluten-free diet resolves all symptoms, what else COULD it be that needs to be ruled out with a biopsy? In other words, is there any chance at all that my son doesn't have celiac and it was all just coincidence? I haven't been able to get an answer to what other possible illness could cause all the symptoms AND a positive blood test. If there is nothing else, why is a biopsy needed?

When I asked the pediatric GI why I should put my son through that she said, "So you'd have a definitive diagnosis which you need to write your food off your taxes." That seemed a rather lame reason to me to put my kid through hell again. Does anyone else have a doctor that gave a better reason?

If he has a postive blood test and relief of all symptoms on the diet then you really do have a diagnosis. There is also a risk of false negatives on the biopsy. In addition if your son has been gluten free he would need a gluten challenge for at least 2 months before the biopsy. A reaction to the challenge is also diagnostic. If your ped has diagnosed him that should be enough for the schools and writing off gluten free food on your taxes is a complicated process and requires you to spend more on health expenses than a certain amount of your income. For many of us our health related expenses go way down after diagnosis and starting the diet so any tax relief is not available anyway.

If your son has problems that have continued gluten free then that would be a reason to have the endo. Before we go gluten free it can be a useful test but IMHO after being gluten free and healing it seems counterproductive to make someone severely ill just for the endo alone.

[THernandez]

The biopsy is more accurate for diagnosing celiac disease than the blood test and it also gives the doctor and patient a better idea of how much damage has been done to the intestine (villi) due to the consumption of gluten.

That being said, if little damage is visible at the time of the biopsy, that doesn't mean that six months down the road that the damage to the villi in the intestine may not be much worse. So at the same time this procedure can be about "luck" and timing...

I suppose a good question to ask the GI or whoever you are speaking with, If it's not celiac disease than what else could damage the villi in my sons intestine in the same way? (this is if he has had the biopsy done and damage to the villi is very visable)

Does your sons symptoms disappear when he is completely off gluten?

Yes, my sons' symptoms completely disappeared off of gluten. The problem was. it took us 2 months to get in to see the pediatric GI and she was annoyed with me for not getting in sooner, as if it was MY scheduling desk that did the arranging. I merely took the very first appointment available and was first on a list to call in case of any cancellations. It was at this point that she wanted me to put him back on gluten so she could do the biopsy and I just couldn't bring myself to do that to him. So we don't really know how bad the damage was, but based on his severe symptoms, I am assuming they were rather damaged.

Are there any other issues that can give you a positive on both the serologic and genetic test and not be celiac? It's been a few years now, but I wonder if it's worth it to pursue the biopsy again.

[THernandez]

If he has a postive blood test and relief of all symptoms on the diet then you really do have a diagnosis. There is also a risk of false negatives on the biopsy. In addition if your son has been gluten free he would need a gluten challenge for at least 2 months before the biopsy. A reaction to the challenge is also diagnostic. If your ped has diagnosed him that should be enough for the schools and writing off gluten free food on your taxes is a complicated process and requires you to spend more on health expenses than a certain amount of your income. For many of us our health related expenses go way down after diagnosis and starting the diet so any tax relief is not available anyway.

If your son has problems that have continued gluten free then that would be a reason to have the endo. Before we go gluten free it can be a useful test but IMHO after being gluten free and healing it seems counterproductive to make someone severely ill just for the endo alone.

This is kind of how I felt. It seemed like a cruel thing to do to him after he'd been so sick for so long. I'm not worried about a tax write off. My husband is self-employed so taxes are already a tricky thing for us. I wasn't seeking a financial reason when I spoke with the Ped GI, just a medical reason, but she didn't give me one and I think at that stage I was still like a deer caught in the headlights and didn't have the forethought to keep asking.

I don't really notice any symptoms in him at all any more, but I'm always on the lookout for things; hyper vigilant, I guess, because there are so many things that seem to go hand-in-hand with celiac.