Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

ellen123

Self-diagnosed And Afraid To Tell Family Doctor

Recommended Posts

I am anxious to inform our family doctor about the fact that I have celiac disease but I don't want it in my medical records because I am afraid it will result in a hassle with my current health insurance company as well as hinder my ability to get health insurance in the future. Even though I wasn't aware of celiac disease when I got my insurance I know from past experience that the insurer will likely question whether we "failed to disclosed" something and delay claims, threaten to discontinue me, etc. (it's an individual, not a group plan). I also fear that it may hinder my ability to get insurance in the future. Since there's nothing my doctors can do for me at this juncture, I haven't informed them. However, I feel they need to be educated about this, especially since my children both go to the same medical practice and they haven't yet been diagnosed.

I diagnosed myself through research of my symptoms, successfully overcoming symptoms through a strict gluten-free diet, and observing the consequences when I accidentally ate something with gluten or was exposed to cross-contamination. Celiac disease didn't occur to my doctors when I went to them for longstanding neurological symptoms (pain, headaches), although in their defense, that's the only symptom I presented to them (I don't have GI problems, and I had not connected my DH to the neurological symptoms at that time, so I didn't mention the DH). But now that I am aware, I suspect that my 18 year old daughter may have celiac disease. To make matters worse, when her recent blood tests showed slightly elevated thyroid numbers and my daughter said "My mom thinks I have celiac disease," the nurse practitioner said, "Oh, there's no connection between celiac disease and your thyroid." So of course now I HAVE to educate them and I will. I may even donate my copy of the Dr. Green book to their practice. But my question remains: can I inform my doctor that I am certain I have celiac disease and insist that they do not include it in my records? Do any of you have this same issue, and how have you handled it?

Incidentally, I understand Congress just passed a law preventing the results of genetic testing from being used to deny people insurance coverage. But that's a little different, since in most cases genetic markers don't clearly show the existence of a disease, just the tendency toward it.

Ellen

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I'm thinking you may not have an issue at all. Most doctors won't believe the Celiac diagnosis even if you present the evidence. My gastroenterologist, did say that diet is a valid indicator, but did not give me an official diagnosis because my endoscope did not show damage and my blood tests were within normal ranges. I had been gluten-free for 5 months by the time I saw him, and low carb for several years before that, so the chances of missing the damage were great...even so, he did not give me the official diagnosis, which is just fine by me.

Your experience with your doctors may certainly be different, I just wouldn't be surprised if they don't believe it. :P

Share this post


Link to post
Share on other sites

I understand your dilemma. I just saw my doctor and he accepted my self diagnosis!!!! But since I have no on record testing the insurance company can't use that against me. Anyone can not eat gluten. It was already on my records that I had eczama that was cured by not eating wheat.

As far as your daughter, If you request a test and will not take no for an answer, they have to test her. If you don't want it on her medical records then do the diet elimination or enterolab.

good luck


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

Share this post


Link to post
Share on other sites

Why do you feel you have to share this info with your doctor? First off, they'll discount your self-diagnosis and they almost certainly won't diagnose you based on that. They'd probably want to take blood tests and do endoscopy, which will be negative most likely since you're gluten free. Just save yourself the hassle and anger and don't involve your doctor.

Tell your friends, family you're a celiac or allergic to gluten (expect limited understanding) and don't worry about not having a note scrawled in your file somewhere. Chances are the doctor will decide you're depressed, not gluten sensitive, and should be on antidepressants, because you're making up weird diseases to have.

Doctors for the most part don't have anything they can offer us when it comes to this disease. A really good doctor would screen you for nutritional deficiencies, bone loss and stuff, but they're very, very few and far between.

Share this post


Link to post
Share on other sites
Why do you feel you have to share this info with your doctor? First off, they'll discount your self-diagnosis and they almost certainly won't diagnose you based on that. They'd probably want to take blood tests and do endoscopy, which will be negative most likely since you're gluten free. Just save yourself the hassle and anger and don't involve your doctor.

Tell your friends, family you're a celiac or allergic to gluten (expect limited understanding) and don't worry about not having a note scrawled in your file somewhere. Chances are the doctor will decide you're depressed, not gluten sensitive, and should be on antidepressants, because you're making up weird diseases to have.

Doctors for the most part don't have anything they can offer us when it comes to this disease. A really good doctor would screen you for nutritional deficiencies, bone loss and stuff, but they're very, very few and far between.

Better yet, why even go to the doctor? If you don't tell them all of your symptoms and factors that are affecting your health how can you expect quality care? Yes, some doctors will discount or dismiss what you tell them but then it is their error not one you made.

Share this post


Link to post
Share on other sites

Ellen, you are saying you have DH. Were you officially diagnosed with that? If you were, than you have been diagnosed officially with celiac disease, even if your doctors didn't understand that. And I suspect neither do a lot of insurance companies.

The ONLY cause of DH is celiac disease (even though not all people with celiac disease get DH), and the ONLY valid cure for it is the gluten-free diet.

And an awful lot of people with celiac disease have thyroid problems, there is definitely a link.

If you don't want your daughter to have the same insurance dilemma when she gets older, you may just have her tested with Enterolab. They can't officially diagnose celiac disease, but they can diagnose gluten intolerance.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

I agree if you have been diagnosed with DH you have been diagnosed with Celiac.

Apart from that, if you ever have the misfortune to land in a hospital, it would be imperative for your doctor to know you have Celiac or are at least gluten intolerant.

Has your doc not wondered why you are feeling better by the way? Or is that beyond his/her ken?

All this insurance business seems like so much bother if you can't even use it. I would bet though they don't even recognize your disease officially like the others suggested. However it should be on there unofficially with your docs that you are severely gluten intolerant.


Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

Share this post


Link to post
Share on other sites
Why do you feel you have to share this info with your doctor? First off, they'll discount your self-diagnosis and they almost certainly won't diagnose you based on that. They'd probably want to take blood tests and do endoscopy, which will be negative most likely since you're gluten free. Just save yourself the hassle and anger and don't involve your doctor.

Tell your friends, family you're a celiac or allergic to gluten (expect limited understanding) and don't worry about not having a note scrawled in your file somewhere. Chances are the doctor will decide you're depressed, not gluten sensitive, and should be on antidepressants, because you're making up weird diseases to have.

Sorry, I guess I wasn't being clear. I don't need the official diagnosis or a note scrawled in my records.

I want to tell them because I feel it's important to educate anyone and everyone who needs to know, not just family and friends, but health practitioners too. Especially since my daughter was given misinformation about it and they are likely to similarly misinform other patients. My question really was: assuming they do believe me or at least believe celiac disease is a viable possibility, are they obliged to put it in my records? Even if they're not obliged to do so, would a conscientious doctor feel it necessary to note it in my records even if I don't want it in there and don't want to be tested? Can I tell my doctor about it and then insist that it doesn't get mentioned in my records, especially if they don't test me and it's just based on my "belief."

I am wondering about this because I actually think my family doctors are caring and concerned, not stubborn and arrogant as many doctors seem to be. I don't blame them for not picking up on celiac disease in my case, since I myself did not tell them all my symptoms (because I didn't make the connection myself, and I have a pretty skimpy medical file -- I don't go to the doctor unless I really have to). Their failure to test me for celiac disease is understandable under those circumstances. I just think they are ignorant of the ramifications of celiac disease (at least the nurse was) and I feel like it's important for us to educate the medical community as well as friends and family, at least when it's possible to do so, instead of blowing them off like so many of them blow us off. Of course, I can always send them an anomymous letter or send my daughter's nurse the Dr. Green book with the thyroid pages highlighted. I'm just wondering what a conscientious doctor's obligations are relating to noting this in medical records. Can I discuss it freely and then insist they don't write it in there? Or will this just open up a fear-of-malpractice can of worms?

Share this post


Link to post
Share on other sites

I do understand exactly what you are saying. But I am asking you anyway: Have you been officially diagnosed with DH? Because if you have, you HAVE been tested for celiac disease, and officially diagnosed with it. And if your doctors don't realize that they are even more ignorant than you think they are.

If your medical record already states that you have DH, then it is already saying that you have celiac disease. Which the insurance company people may not understand (which may be just as well).

And yes, your doctor and everybody else in your office needs some serious educating when it comes to celiac disease.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites
Ellen, you are saying you have DH. Were you officially diagnosed with that? If you were, than you have been diagnosed officially with celiac disease, even if your doctors didn't understand that. And I suspect neither do a lot of insurance companies.

The ONLY cause of DH is celiac disease (even though not all people with celiac disease get DH), and the ONLY valid cure for it is the gluten-free diet.

And an awful lot of people with celiac disease have thyroid problems, there is definitely a link.

Thanks, Ursa Major. In fact, it was your comment on another thread that made me understand for certain that I do have celiac disease. I am positive I have dh, but no, I have not been tested. I am a person who seldom goes to doctors. In fact, in spite of years of pain in my neck, for the most part I didn't seek treatment, as on the few occasions when I mentioned it to doctors, they didn't seem to take it seriously or know what to do -- so I just coped with it. I tend to be kind of stoic about pain and I don't have much confidence in western medicine as a rule. After I developed peripheral neuropathy in addition to increasingly unbearable neck pain (for which physical therapy did nothing), I researched, learned about celiac disease, and treated myself with a gluten-free diet. Before that, I always thought of myself as a really healthy person who just was unfortunate to have a bad "weak spot" -- my neck, which has given me 25 or more years of chronic pain and frequent headaches.

I will look into Enterolab relating to my daughter. Thanks again. Your replies are always helpful. :)

Ellen

Share this post


Link to post
Share on other sites
I agree if you have been diagnosed with DH you have been diagnosed with Celiac.

Apart from that, if you ever have the misfortune to land in a hospital, it would be imperative for your doctor to know you have Celiac or are at least gluten intolerant.

Has your doc not wondered why you are feeling better by the way? Or is that beyond his/her ken?

All this insurance business seems like so much bother if you can't even use it. I would bet though they don't even recognize your disease officially like the others suggested. However it should be on there unofficially with your docs that you are severely gluten intolerant.

Thanks, Yolo. Please see my reply to Ursa's comment for the answer to why my doc hasn't noticed that I'm feeling better now. In short, I don't go to doctors unless I'm scheduled for my 100,000 mile service, or I feel like I'm dying.

But you're right. It feels like my doctor should be informed, not so much for any reason I can think of but more so for the reasons I can't think of. What if I wind up hospitalized and they feed me some kind of gluten-laden intravenous solution or something? (If there is such a thing. . .) In any case, this insurance system in this country stinks, doesn't it?

Share this post


Link to post
Share on other sites

You can always ask your doctor to label you as "gluten-intolerant" on your records, if she feels she must write something down.

I totally agree with your reservations about the celiac label, and also with your feeling of needing to educate the doctors.

Share this post


Link to post
Share on other sites
You can always ask your doctor to label you as "gluten-intolerant" on your records, if she feels she must write something down.

That sounds like a good idea. Or maybe I can have them write "allergies: wheat, barley, rye." I'll give this some thought. Thanks.

Share this post


Link to post
Share on other sites

As I live in the UK I don't have insurance dilemma to worry about - my dilemma is to get the doctors to actually diagnose it so that I can obtain gluten-free on prescription!

However, I can't help feeling that to the Insurance Companies a diagnosis of Celiac ought to actually put your premium down! After all, if, once you start to follow the gluten-free diet all your symptoms of these other 'diseases' that you may have had to have costly medication or treatment for, go away or radically improve then you have to be a far lower risk to them.

Not only that, once the diet is implemented the risk of other diseases like cancer or heart disease, etc., is so radically reduced that a Celiac 'sufferer' actually becomes far less of a risk for that than all those other people out there who although not sick at the moment, may well be Celiac themselves or are suffering other ailments because of gluten intolerance!!!


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

Share this post


Link to post
Share on other sites

Ali8, you are quite right, but, unfortunately, the insurance company sees the concurrence of celiac and other autoimmune conditions, AND the fact that lymphoma is a sort of end-stage of celiac, so they see celiac as being extremely high-risk.

Share this post


Link to post
Share on other sites

Yes but, surely the lymphoma is only a risk in the undiagnosed Celiac who is not following the gluten-free diet??!!! That kind of ignorance is sheer stupidity. The whole benefit of being diagnosed is to regain health and avoid any further deterioration.

If you think about it, it would be in the Insurance companies' interests to have everyone who takes out insurance tested for Celiac. That way, far more of their customers would stay healthy and be less of a burden on them, whilst still providing a nice little earner in Premiums!!!

Actually, it would be in the health industries' interests as a whole as Celiacs would cease to be a burden to everyone!

If we were all tested routinely, I might have been picked up as a child and not developed diabetes and my other health issues so it would be a win-win situation. Good health for me and less long-term expense for the National Health. I have only been gluten-free for 3 months but already I have been able to drop the blood pressure medication. Do they care? Not just me maybe, but repeat that hundred-fold and maybe they would sit up and take notice!

What a stupid world we live in.............


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

Share this post


Link to post
Share on other sites
What a stupid world we live in.............

Sometimes it's hard to underestimate the intelligence of the insurance system.

There are so many cases of people who are seriously injured in some sort of accident, often paralyzed and needing assistance for *everything* including to breathe. Many of them recover to the point where they can be cared for in their own homes with round-the-clock nursing care, which is not only a better environment for the patient, but a small fraction of the cost of care in a facility. Almost without exception the insurance companies turn them down for this because the only approved level of care is in the facility. So the patient suffers, and the policy holders share the cost.

Is that stupid or what!


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

Share this post


Link to post
Share on other sites

I am self diagnosed (negative blood test) with a wonderful doctor who accepts dietary response. I have celiac on my records, but if I ever have trouble with insurance I'll say "prove it". Heck, I'd be willing to do a repeat blood test right now! I think it's important to tell your doc. A celiac is more prone to other autoimmune diseases so I want her to be on the lookout for that. My mum has a similar situation and her doctor immediately tested her bone density - something the doc wouldn't have done if mum hadn't had celiac. Plus my doc wrote me a note/prescription about needing to be gluten-free so I can easily carry food with me to sporting events and airports.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

Share this post


Link to post
Share on other sites
Ali8, you are quite right, but, unfortunately, the insurance company sees the concurrence of celiac and other autoimmune conditions, AND the fact that lymphoma is a sort of end-stage of celiac, so they see celiac as being extremely high-risk.

I have been told that some people have been turned down for LIFE insurance because they were diagnosed celiacs.


Gluten free 3/07 self diagnosed

Specific Carbohydrate Diet 4/08--yes, it works.

Share this post


Link to post
Share on other sites

for Life Insurance; try MetLife...you might not get Preferred Rates, but if you are a controlled celiac you may get the Standard Rates.

Husband took out a life insurance policy with MetLife a couple of years ago and we ran into this. He isn't officially diagnosed as celiac, but the questions on the form do make you have to write down info about doctor visits, etc. and some level of disclosure can't be avoided.

I think the sooner insurance carriers "get" that 1 in 133 have it, they'll realize that they've been

'Insuring' this risk unknowingly all along.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

Share this post


Link to post
Share on other sites

I'm so glad I read this thread. I'm going to the doc next week mainly for problems realated to this. After reading all of the crap everyone has been going through, I'm pretty comfortable with accepting the fact that I KNOW I am gluten sensitive. They cant really test me since I've been gluten-free and I refuse to go back. I'm only going to hte doc because, for one its a new doctor for me, and two, I've been having stomach problems that are still happening even gluten-free (although my D, C and gas are gone- thank GOD!! :lol: ) I also have been having lower back pain and mensrual problems, so I'm definitly going to explain to them what I have done with my diet and what changes I've been through b/c of it. I dont really want to get tested since I cant (accept a gene test). Hopefully just from explaining my situation they will be more believing. SO instead of just going in there specifically for gluten intolerance, I am going for my other problems that might be related, though I'm not going to say they are related, I want to see what they say. it should be obvious (w/o directly telling them) that gluten is linked to my problems I've been having for 6+ years just by describing my symptoms with and without Gluten. If they can at least put "gluten intolerant" on my record for the future I will be satisfied!!! PLus I can tell my familyI officially went to the doc, since my info is confedential, maybe I can finally convince them I'm not making this up!!!!!

Share this post


Link to post
Share on other sites

I recently switched doctors because the one I have been working with for the past year just wanted to tell me I had IBS and move on. I already knew it wasn't IBS because of all of the other symptoms, especially when I got DH. So I started looking for a new doc. I visited with my new doc last weds and she was completely ready for my visit. I told the receptionist when I booked my appointment that I needed to meet with the doc to talk about my celiac symptoms. The receptionist paused for a few secs on the phone and asked what is celiac and how do you spell it? She admitted she never heard of that before.

When I came in to meet w/the new doc she knew exactly what celiac was and was completely understanding of how I felt and have been feeling for the past 7 years. Either she did her research before I got there since I left the note with the receptionist or she happens to be one of the few docs who knows the details about it. She did admit that even though I have been purposely eating gluten foods to prep for my blood work, the tests could easily come back negative. I told her about the rash on the back of my neck and as well as all of the other irritating celiac symptoms. She asked about family history and I told her my mom has thyroid issues and mild food allergies but has never been diagnosed with Celiac. My grandmother was diagnosed with diverticulosis and suffered from jaundice and thyroid disease pretty much her whole life and she eventually passed away due to lymphoma. W/that history the doc said there is a highly likely chance that I do have celiac disease, however, she also said it could be a very strong wheat allergy. Does any one know if just having a strong wheat allergy will cause DH, but you technically are not considered a celiac?

As for the insurance part, she did mention that if the blood work comes back positive she will put in my file that I have celiac disease. However, if it comes back negative she will put in my file that I have a wheat allergy and not to give me any meds with gluten in them and so on. We talked about having issues with insurance companies once being labeled a celiac and she said health insurance companies probably wont give you a problem but life insurance companies are known for being extra picky about who they insure because they want people with "perfect" health.

Share this post


Link to post
Share on other sites
Does any one know if just having a strong wheat allergy will cause DH, but you technically are not considered a celiac?

According to Dr. Peter Green [Celiac Disease: A Hidden Epidemic], If you have a positive diagnosis of dermatitis herpetiformis, you have celiac disease. And you must adhere to a gluten-free diet no matter how "normal" your intestine may appear. (Emphasis his.) There is no other known cause of DH other than celiac disease. Apparently the only really reliable way to diagnose DH is through a skin biopsy taken near, but not at, the site of a DH lesion. A skilled dermatologist should know how to do it. Dr. Green says there is another, almost identical disease called "linear IgA disease" and a biopsy will reveal whether it is DH or the other.

Having now learned that a diagnosis of DH means a diagnosis of celiac disease, I am still reluctant to get a skin biopsy for the same reason I expressed earlier: while I want to educate my doctors and I also think it's probably wise to protect myself with some sort of "gluten intolerant" note in my records, I don't want to be denied insurance or have any kind of celiac-related symptoms excluded from coverage. Health insurance is supposed to help us with access to medical care, not punish us for getting sick -- but that's not the reality at this point.

Share this post


Link to post
Share on other sites

Be advised! The biopsy for DH is quite deep, and is almost certain to leave scars--which for me, were nearly as itchy as the DH for about a year and a half. They have since faded to white, but during that first year and a half, they were quite red and very noticeable.

Share this post


Link to post
Share on other sites
Be advised! The biopsy for DH is quite deep, and is almost certain to leave scars--which for me, were nearly as itchy as the DH for about a year and a half. They have since faded to white, but during that first year and a half, they were quite red and very noticeable.

Wow, that's really good to know. It's amazing what I've learned from others on this site in just a few months! Thanks.

Ellen

Share this post


Link to post
Share on other sites