Will A Gi Give A Formal Celiac Diagnosis W/ Neg Biopsy?

[Sarah8793]

I know I have been posting a lot of questions lately due to my realization that I most definitely have an issue w/ gluten now. So thank you so much for all of your support.

I would like to get a diagnosis from my GI doctor. He did bloodwork a few years back (in which all he told me was that I had 2 of the less specific antigens out of 4 for celiac disease and that I needed a small bowel biopsy). The biopsy came back neg. Then last summer he did another small bowel biopsy and an upper GI for dyspepsia. Again the biopsies were negative. Now I have my results from EnteroLab showing 2 main celiac genes, malapsorption, an immune reaction and casein intolerance. Do you think if I bring this in I could get him to give me a diagnosis? Have any of you or do you know of anyone who got one w/out the positive biopsy?

Sarah

[eKatherine]

  Sarah8793 said:

I know I have been posting a lot of questions lately due to my realization that I most definitely have an issue w/ gluten now. So thank you so much for all of your support.

I would like to get a diagnosis from my GI doctor. He did bloodwork a few years back (in which all he told me was that I had 2 of the less specific antigens out of 4 for celiac disease and that I needed a small bowel biopsy). The biopsy came back neg. Then last summer he did another small bowel biopsy and an upper GI for dyspepsia. Again the biopsies were negative. Now I have my results from EnteroLab showing 2 main celiac genes, malapsorption, an immune reaction and casein intolerance. Do you think if I bring this in I could get him to give me a diagnosis? Have any of you or do you know of anyone who got one w/out the positive biopsy?

Sarah

Nini got one, I believe on the basis of blood tests and dietary response.

If you want the diagnosis, it's worth a shot, but judging on his past actions I'd guess he probably won't accept the diagnosis until he gives you a biopsy that is positive. Just curious, why do you want the medical diagnosis?

[Sarah8793]

  eKatherine said:

Nini got one, I believe on the basis of blood tests and dietary response.

If you want the diagnosis, it's worth a shot, but judging on his past actions I'd guess he probably won't accept the diagnosis until he gives you a biopsy that is positive. Just curious, why do you want the medical diagnosis?

Well actually I'm not sure why or if I have to have one. When I go to the clinics where I live, my medical file is retrieved by whatever specialist I happen to be seeing and if I say I have celiac disease, they will ask me who my GI doctor is and then review his notes. Then when they see nothing confirmed they will question me. Another reason I thought it would be good is if I were to be hospitalized and needed a gluten free diet. Would I have difficulty getting complete cooperation if it wasn't diagnosed by a doctor? Maybe these are non-issues, I don't know. And I guess I was also thinking that it might help in the future diagnosis of my kids. Am I worrying for nothing?

[queenofhearts]

I was glad for my official diagnosis, mainly because it helps other people take the diet seriously. Somehow self-diagnosis is perceived as self-indulgence by a lot of folks. It's hard enough as it is getting my family to be careful about cross-contamination; it would be harder if they thought this was just a flaky notion of mine.

Official diagnosis also makes it possible to get a tax break on gluten-free foods, though it's probably not worth the paperwork unless you have lots of medical expenses.

Leah

[eKatherine]

  Sarah8793 said:

Well actually I'm not sure why or if I have to have one. When I go to the clinics where I live, my medical file is retrieved by whatever specialist I happen to be seeing and if I say I have celiac disease, they will ask me who my GI doctor is and then review his notes. Then when they see nothing confirmed they will question me. Another reason I thought it would be good is if I were to be hospitalized and needed a gluten free diet. Would I have difficulty getting complete cooperation if it wasn't diagnosed by a doctor? Maybe these are non-issues, I don't know. And I guess I was also thinking that it might help in the future diagnosis of my kids. Am I worrying for nothing?

You have gluten intolerance. That should be enough to get you a special diet if you ever need one. If the doctor won't accept your word for the fact that eating gluten makes you sick, that doesn't mean you should have to undergo a gluten challenge, make yourself sick as a dog for months because he's behind the times and likes invasive procedures.

Having a "celiac" diagnosis on your chart will make it hard to get insurance in the future. The treatment is the same whether your doctor cooperates or not.

[Nantzie]

I'm kinda in the same dilemma as you are. My genes are the gluten intolerant genes rather than the celiac ones though. I know that there are several people on here who got an official diagnosis based on dietary response alone. I've been considering it just in case I'm ever in the hospital, or for my kids. My daughter is showing some signs, so I'm getting her tested through Enterolab now.

But then there is the insurance situation. I've seen a few posts on here where people have been able to get their insurance to actually reimburse or cover their Enterolab costs. On the other hand, there are more people who have had insurance denied or other insurance problems due to celiac being in their records as a pre-existing condition.

So, I think at this point the insurance situation is in such flux that if you can stay under the radar, it's better.

I'm a planner by nature, so I've figured out what I'm going to do -

If I have to have some sort of planned operation or procedure, I'll call and talk to the dietician at the hospital and tell them I need a gluten-free diet. If she doesn't question me, and just goes with it, I'll just leave it at that. If she questions me at all, or says she has to talk to the doctor, I'll talk to the doctor and let him know that although I don't have an "official diagnosis", these are my symptoms on gluten. I'm sure that no matter what you're going in for, if you have to actually be IN the hospital, the doctor is not going to want to have someone just out of surgery to be trying to go to the bathroom 10 times a day with D, or thrashing around from nightmares, or whatever your symptoms are.

In the case of something sudden like a car accident, or not being able to communicate for some reason, I've been planning on getting or making a medical alert ID card to put in my wallet with my insurance card. If you're not able to communicate, they look through your wallet for id and contact information, so it should be the first place they look. The main thing to know about something like this is that if you're not conscious, they're not going to try and feed you. But I'm going to put something in my wallet stating I have gluten intolerance, saying I need a gluten-free diet, and without the gluten-free diet, my symptoms are... The D alone should scare any medical worker, especially a nurse, to becoming an instant advocate for my gluten-free diet.

As for kids, I would trust Enterolab over a GI anyway at this point in time. The biopsy just isn't a good diagnostic tool compared to Enterolab. I'm not sure if schools require a doctor's note for gluten-free for lunches because my kids are still only 2 and 4, but I would hope and imagine that the symptoms after being glutened at lunch would make a teacher dive across a lunch table to keep a gluten-intolerant child from eating something bad just as quickly as a parent would. If the kids are older, they'll know what to stay away from.

I was really thinking about getting my insurance to reimburse for Enterolab for my daughter, because my husband and his family really gave me a horrible time when I first figured this all out for myself. (Called me a hypochondriac and the whole nine yards...) But they have seen with their own eyes how much better I feel and now they're being really good about it. So we'll see how they react if she comes up positive on Enterolab. If my in-laws throw a fit about it, I'll just lay down the law. If my husband throws a fit about it, I'll take the Enterolab results to her doctor and have her look at it and make an official recommendation based on that. I'm not going to have her biopsied just because I know she doesn't have the main genes for celiac and they wouldn't find any damage anyway.

Anyway, just my thoughts and ideas on the subject. Hope that helps.

Nancy

[Sarah8793]

  queenofhearts said:

I was glad for my official diagnosis, mainly because it helps other people take the diet seriously. Somehow self-diagnosis is perceived as self-indulgence by a lot of folks. It's hard enough as it is getting my family to be careful about cross-contamination; it would be harder if they thought this was just a flaky notion of mine.

Official diagnosis also makes it possible to get a tax break on gluten-free foods, though it's probably not worth the paperwork unless you have lots of medical expenses.

Leah

This is what I have been thinking about. I'm afraid that I will be seen as a hypochondriac and a self-diagnoser by the great lot of people who think this way. My best friend has a whole new attitude about my gluten restriction now that I got EnteroLab results to confirm it. Still not sure if I should pursue it though. Hmmm. Thanks for sharing your thoughts,

Sarah

  eKatherine said:

You have gluten intolerance. That should be enough to get you a special diet if you ever need one. If the doctor won't accept your word for the fact that eating gluten makes you sick, that doesn't mean you should have to undergo a gluten challenge, make yourself sick as a dog for months because he's behind the times and likes invasive procedures.

Having a "celiac" diagnosis on your chart will make it hard to get insurance in the future. The treatment is the same whether your doctor cooperates or not.

After reading your post, I'm now wondering why I would need one other than my own self-esteem on the matter. But I can work on that because I definitely don't want to have problems with insurance companies in the future. I absolutely am NOT willing to do a gluten challenge. My symptoms (especially the atypical ones) were bad enough that I'm afraid I might do permanent damage by resuming gluten. And 2 biopsies was enough. Thanks for your thoughts on this.

Sarah

[Sarah8793]

  Nantzie said:

I'm kinda in the same dilemma as you are. My genes are the gluten intolerant genes rather than the celiac ones though. I know that there are several people on here who got an official diagnosis based on dietary response alone. I've been considering it just in case I'm ever in the hospital, or for my kids. My daughter is showing some signs, so I'm getting her tested through Enterolab now.

But then there is the insurance situation. I've seen a few posts on here where people have been able to get their insurance to actually reimburse or cover their Enterolab costs. On the other hand, there are more people who have had insurance denied or other insurance problems due to celiac being in their records as a pre-existing condition.

So, I think at this point the insurance situation is in such flux that if you can stay under the radar, it's better.

I'm a planner by nature, so I've figured out what I'm going to do -

If I have to have some sort of planned operation or procedure, I'll call and talk to the dietician at the hospital and tell them I need a gluten-free diet. If she doesn't question me, and just goes with it, I'll just leave it at that. If she questions me at all, or says she has to talk to the doctor, I'll talk to the doctor and let him know that although I don't have an "official diagnosis", these are my symptoms on gluten. I'm sure that no matter what you're going in for, if you have to actually be IN the hospital, the doctor is not going to want to have someone just out of surgery to be trying to go to the bathroom 10 times a day with D, or thrashing around from nightmares, or whatever your symptoms are.

In the case of something sudden like a car , or not being able to communicate for some reason, I've been planning on getting or making a medical alert ID card to put in my wallet with my insurance card. If you're not able to communicate, they look through your wallet for id and contact information, so it should be the first place they look. The main thing to know about something like this is that if you're not conscious, they're not going to try and feed you. But I'm going to put something in my wallet stating I have gluten intolerance, saying I need a gluten-free diet, and without the gluten-free diet, my symptoms are... The D alone should scare any medical worker, especially a nurse, to becoming an instant advocate for my gluten-free diet.

As for kids, I would trust Enterolab over a GI anyway at this point in time. The biopsy just isn't a good diagnostic tool compared to Enterolab. I'm not sure if schools require a doctor's note for gluten-free for lunches because my kids are still only 2 and 4, but I would hope and imagine that the symptoms after being glutened at lunch would make a teacher dive across a lunch table to keep a gluten-intolerant child from eating something bad just as quickly as a parent would. If the kids are older, they'll know what to stay away from.

I was really thinking about getting my insurance to reimburse for Enterolab for my daughter, because my husband and his family really gave me a horrible time when I first figured this all out for myself. (Called me a hypochondriac and the whole nine yards...) But they have seen with their own eyes how much better I feel and now they're being really good about it. So we'll see how they react if she comes up positive on Enterolab. If my in-laws throw a fit about it, I'll just lay down the law. If my husband throws a fit about it, I'll take the Enterolab results to her doctor and have her look at it and make an official recommendation based on that. I'm not going to have her biopsied just because I know she doesn't have the main genes for celiac and they wouldn't find any damage anyway.

Anyway, just my thoughts and ideas on the subject. Hope that helps.

Nancy

Nancy,

Your post is so helpful! You have already given this a lot of thought and it gives me more to think about. I really like your plan. I might do the very same! I am wondering if the insurance situation could be a problem for my kids also. I have been contemplating getting my 7 year old (not sure about the 4 year old yet) tested. I don't plan on having either of them biopsied (too invasive especially for a child). I was thinking of having work done to see if they are making antigens. Then I would probably go with enterolab or just gluten free. If they aren't making antigens yet, then I would hold off and test again in the future. Deciding what to do with my kids is confusing right now. Since my son is school age, I do wonder about the future of gluten free lunches and what is required. Maybe I'll create a post on that to see what others have encountered. Right now I pack for him, but occasionally he likes to eat at school. My inlaws will act really weird when they find out I am gluten free. The relations there are already strained and this will be one more reason for them to bad mouth me (in their minds ) Thankfully we rarely see them as they live in another state. My husband is being very supportive. I think he is probably excited that there is finally a "real" reason for all of my complaining. Thanks so much,

Sarah

[eKatherine]

  Sarah8793 said:

After reading your post, I'm now wondering why I would need one other than my own self-esteem on the matter. But I can work on that because I definitely don't want to have problems with insurance companies in the future. I absolutely am NOT willing to do a gluten challenge. My symptoms (especially the atypical ones) were bad enough that I'm afraid I might do permanent damage by resuming gluten. And 2 biopsies was enough. Thanks for your thoughts on this.

Sarah

Nobody's going to give you any grief on your diet unless you let them. There's no reason for you to go through a list of test results with acquaintances and relatives. They know nothing about celiac and the medical implications of different types of testing. "Gluten makes me sick, so I don't eat it anymore" should be good enough for them. If it's not good enough, don't let it be your problem.

[Sarah8793]

  eKatherine said:

"Gluten makes me sick, so I don't eat it anymore"

I like this. This is exactly what I am going to say from here on. Thanks!

Sarah

[wolfie]

I have gone back & forth on this issue myself. I was misinformed and went gluten-free before consulting a GI, who wanted to do the biopsy, but I was feeling so good, there was no way I was going back to eating gluten. Then, I saw my OB/GYN and filled her in b/c we had talked about my stomach problems in the past. She agreed that going back to eating gluten for the biopsy was not necessary b/c the end result is the same. However, she did write "recently diagnosed with Celiac disease" in my chart I found out later. I was denied for life insurance recently based on records from her office. I called and spoke with the nurse and she said it was either the Celiac or my past history with abnormal paps and a recently LEEP procedure. I do have a current life insurance policy, we were just trying to make some changes. So, I guess my advice here is to not push it. You know that you can't eat gluten. If you are worried about getting your kids tested, just keep asking the dr to test them, if he won't, find a new dr or go through Enterolab. I had to keep on my kids dr for quite a few months and he finally tested DS (thankfully b/c he was just diagnosed with Celiac last week). DD has now been tested, too.

Sorry for rambling on. I hope my post isn't confusing!

[Sarah8793]

  wolfie said:

I have gone back & forth on this issue myself. I was misinformed and went gluten-free before consulting a GI, who wanted to do the biopsy, but I was feeling so good, there was no way I was going back to eating gluten. Then, I saw my OB/GYN and filled her in b/c we had talked about my stomach problems in the past. She agreed that going back to eating gluten for the biopsy was not necessary b/c the end result is the same. However, she did write "recently diagnosed with Celiac disease" in my chart I found out later. I was denied for life insurance recently based on records from her office. I called and spoke with the nurse and she said it was either the Celiac or my past history with abnormal paps and a recently LEEP procedure. I do have a current life insurance policy, we were just trying to make some changes. So, I guess my advice here is to not push it. You know that you can't eat gluten. If you are worried about getting your kids tested, just keep asking the dr to test them, if he won't, find a new dr or go through Enterolab. I had to keep on my kids dr for quite a few months and he finally tested DS (thankfully b/c he was just diagnosed with Celiac last week). DD has now been tested, too.

Sorry for rambling on. I hope my post isn't confusing!

Thanks for sharing this. It affirms my decision to wait on a diagnosis. Sorry this happened with you. It is good that you already had life insurance then. I do not have life insurance and have never applied.

Sarah

[rogue]

I was diagnosed with Celiac with a negative biopsy. From my understanding, while the biopsy itself can be either positive or negative, whether or not that determines you have celiac disease is either positive or inconclusive. You have 20-22 feet of small intestine, and the endoscope barelly reaches a fraction of it. You may have patchy damage. I don't believe that the biopsy is the most accurate test available. If you have positive blood work and react well on the gluten free diet, it's a safe bet you have celiac disease.

You could also request a blood panel of fat soluable vitamins such as the B vitamins, beta-carateen, iron, and calcium. Many people with celiac disease with have a slight definiciency of one or many of these vitamins. I had B12 deficiency and that was a big clue to my doctor that I was having malabsorption problems.

[Webcrystal]

My son eats gluten free - he is not "formally" diagnosed celiac .. but he had other symptoms and problems that resolved going gluten free. My doctor wrote a note saying that he has to eat gluten free (he didn't say celiac, etc.). My school accepted it fine... they are however NOT going to provide gluten free alternatives (like gluten-free bread). I could probably push it but that'd just tick 'em off. So I coordinated with the nutritionist and we compromised. I also let her know that I know that they are required by law to accomodate so that made her much more ameniable to compromise -- Anyway foods that were gluten free we checked off as ok. I take the monthly menu and I mark off things he can't have. On days that there is enough gluten-free he can eat he'll eat at school - on days where everything is breaded he brings his lunch. They also subsitute extra like sausage if they are having waffles and sausage. They heat a hot dog if they are having corn dogs. And they'll make the hamburger without cheese and bread for him. Stuff like that, a little give and take.

That being said the nutritionist two years before was an a** and didn't want to do anything but since he was only in K (half day) it wasn't an issue and we went to another school district for 1st grade. When we moved back (2nd) I was happy there was a new person there cause I wasn't looking forward to a fight

Also many people (esp. those with severe reactions) are too wary of cross cont. to allow their kids to eat at school so it's not an issue with them.

There are two reasons for my choice.. one it really sucks to be so different from the other kids and never be able to eat at school and two I know kids and he'd be swapping anyway. I do choose the foods least likely to be affected by cc and involve him in the choices so he learns how to make better choices in public venues.

[jayhawkmom]

Dietary requirements should not be an issue in the hospital. If you are diabetic, they don't ask for "proof" to feed you a diabetic diet. If you are a vegetarian, they don't require paperwork to avoid meat. A gluten free diet should be just as easy for a hospital staff to accomodate. =)

I've only been hospitalized 3 times, all 3 for pregnancy - and all 3 times noted "if you have any type of dietary restrictions, let us know and we'll work with you" type statements on the food menus. Nothing was ever said that you need to have proof of necessity for any of them. =) =) =)