Get An Official Diagnosis?

[pala811]

I am new to the website and am looking for some advice. I'm in my 20's and have had digestive problems since I was in high school. I actually recently finished medical school and it was while I was in med school that I started to consider that maybe I actually had a real issue. I've always had issues with allergies, eczema and a red bumps on my arms, low back, knees, tops of my feet that no allergist/dermatologist could really figure out. GI wise, my issues were bloating, stomach pain and cramping, malabsorption-like stool. Pretty much everyone in my family has an autoimmune condition. I'm short-statured and was a "late-bloomer." Starting in my 20's my hair started to thin, my nails started to peel and crack really easily, I became anemic (iron supplements didn't help) and I had 3 stress fractures within a 4 year period. I went to GI doc about a year ago and funny enough the only test I had was a colonoscopy which was fine. No blood tests. Over the past year things got worse and I had more bad GI days than good ones and started to have problems with lactose intolerance. I spent 4 weeks specifically doing a GI rotation and during that time, pretty much diagnosed myself with celiac disease. I did what you're not really supposed to do and started a trial gluten-free diet without a formal diagnosis and have been doing it for about 3 months now. I feel so much better, my skin has cleared up, my nails are growing out stronger and my anemia (measured my looking at skin color, inner eyelids, and subjective measure fatigue).

My basic question is, if I feel so much better on a gluten-free diet and have pretty much decided to continue with it either way, is it really necessary to go through the formal diagnosis? I'm about to start my medical residency and the thought of going back to gluten for the testing while trying to keep up in residency is terrifying. Any thoughts?

[mushroom]

I am new to the website and am looking for some advice. I'm in my 20's and have had digestive problems since I was in high school. I actually recently finished medical school and it was while I was in med school that I started to consider that maybe I actually had a real issue. I've always had issues with allergies, eczema and a red bumps on my arms, low back, knees, tops of my feet that no allergist/dermatologist could really figure out. GI wise, my issues were bloating, stomach pain and cramping, malabsorption-like stool. Pretty much everyone in my family has an autoimmune condition. I'm short-statured and was a "late-bloomer." Starting in my 20's my hair started to thin, my nails started to peel and crack really easily, I became anemic (iron supplements didn't help) and I had 3 stress fractures within a 4 year period. I went to GI doc about a year ago and funny enough the only test I had was a colonoscopy which was fine. No blood tests. Over the past year things got worse and I had more bad GI days than good ones and started to have problems with lactose intolerance. I spent 4 weeks specifically doing a GI rotation and during that time, pretty much diagnosed myself with celiac disease. I did what you're not really supposed to do and started a trial gluten-free diet without a formal diagnosis and have been doing it for about 3 months now. I feel so much better, my skin has cleared up, my nails are growing out stronger and my anemia (measured my looking at skin color, inner eyelids, and subjective measure fatigue).

My basic question is, if I feel so much better on a gluten-free diet and have pretty much decided to continue with it either way, is it really necessary to go through the formal diagnosis? I'm about to start my medical residency and the thought of going back to gluten for the testing while trying to keep up in residency is terrifying. Any thoughts?

Hi, and welcome to the forum. Good to have a doctor on board

Most of us start a gluten free diet out of exasperation at the inability to get anyone to take us seriously and order the right tests. And then once down this path there doesn't seem to be any place to turn around which does not involve ludicrous suffering. We know what's wrong, we know how to cure it (well, for a lot of us we have to find out what else we are intolerant of also , so why do we need the diagnosis? Who are we trying to satisfy by getting the diagnosis is probably the better question to ask. If the spouse/partner needs it, if the family needs it, if the school needs it for a special meal/education plan? These have been issues some of our members have faced. If you personally are happy with the self-diagnosis (and you are the doctor ) and you have none of the foregoing issues, then what is the point of a formal diagnosis. You don't need a doctor to tell you you have cut your thumb (but you might need him/her to suture it). In this case, all you need a doctor for (and who knows, maybe you can order this yourself or have a colleague do it) is to order the blood tests to check your nutrient levels and make sure you are not deficient in B12, folate, D, calcium, zinc, magnesium, ferritin (and also check your thyroid levels); these are all things that tend to get out of whack most often for us.

Now this is the perspective of a happily self-diagnosed person. And I don't at my age see myself applying for an insurance where the diagnosis could be a handicap which is another aspect you could take into consideration, having this on your medical record.

You will probably get lots of opinions on this. Just mine to start you off

[ravenwoodglass]

The decision whether to poison yourself for 3 or more months to get an 'official' diagnosis is up to you. If you still have the 'bumps' and IF they itch horribly and leave a purplish scar that is slow to fade you could try seeing a derm and getting the skin next to the lesions biopsied to look specifically for DH. That is also an 'official' diagnosis of celiac but most insurance companies may not recognize it as such. You only need active lesions to be able to get that diagnosis. There are quite a few of us who show false negatives on blood work and the endo even on a full gluten diet. I am one of them and it delayed my diagnosis for many painful years and left me with permanent damage to my body. I don't know if you would be one of those who would be a false negative but if you are you will be poisoning yourself for 3 months for nothing. No one can tell you what you should do, you know gluten is poison for your body, it is your choice whether to go through the torture that the doctors put us through to get that diagnosis. Someday this country may wise up and start using a mucosal challenge which requires no gluten challenge but since that test is very sensitive and can diagnose us fairly early in the disease process it isn't used here. This coutry prefers to test for everything but celiac first while the patient suffers for an average of 11 to 15 years and takes multiple drugs to control the effects while the disease continues it destruction of body and brain.

[sb2178]

You may need an official diagnosis to get insurance coverage for additional testing like a bone density scan (highly recommended with multiple fractures, even stress fractures) at a younger age. Alternatively, it's probably not that expensive to just pay for one compared to the assorted co-pays and may be worth the money to avoid the pain.

If you're planning (or have) kids, then having an official diagnosis in the family would make it easier for them to get celiac and other autoimmune testing in the future if they develop any symptoms. You could also just wait until you get sensitive enough to develop DH after an accidental exposure, and then have it biopsied rather than doing a formal challenge.

It's also easier to explain sometimes when you can just say that you have a disease where if you eat it, your immune system will destroy your intestinal cells. People take that pretty seriously. But if you're comfortable diagnosing yourself, by all means, go for it.

[Klalu]

Hi, and welcome to the forum. Good to have a doctor on board

Most of us start a gluten free diet out of exasperation at the inability to get anyone to take us seriously and order the right tests. And then once down this path there doesn't seem to be any place to turn around which does not involve ludicrous suffering. We know what's wrong, we know how to cure it (well, for a lot of us we have to find out what else we are intolerant of also , so why do we need the diagnosis? Who are we trying to satisfy by getting the diagnosis is probably the better question to ask. If the spouse/partner needs it, if the family needs it, if the school needs it for a special meal/education plan? These have been issues some of our members have faced. If you personally are happy with the self-diagnosis (and you are the doctor ) and you have none of the foregoing issues, then what is the point of a formal diagnosis. You don't need a doctor to tell you you have cut your thumb (but you might need him/her to suture it). In this case, all you need a doctor for (and who knows, maybe you can order this yourself or have a colleague do it) is to order the blood tests to check your nutrient levels and make sure you are not deficient in B12, folate, D, calcium, zinc, magnesium, ferritin (and also check your thyroid levels); these are all things that tend to get out of whack most often for us.

Now this is the perspective of a happily self-diagnosed person. And I don't at my age see myself applying for an insurance where the diagnosis could be a handicap which is another aspect you could take into consideration, having this on your medical record.

You will probably get lots of opinions on this. Just mine to start you off

I am completely with you! Its so good to hear other people that feel this way!

[Skylark]

I am new to the website and am looking for some advice. I'm in my 20's and have had digestive problems since I was in high school. I actually recently finished medical school and it was while I was in med school that I started to consider that maybe I actually had a real issue. I've always had issues with allergies, eczema and a red bumps on my arms, low back, knees, tops of my feet that no allergist/dermatologist could really figure out. GI wise, my issues were bloating, stomach pain and cramping, malabsorption-like stool. Pretty much everyone in my family has My basic question is, if I feel so much better on a gluten-free diet and have pretty much decided to continue with it either way, is it really necessary to go through the formal diagnosis? I'm about to start my medical residency and the thought of going back to gluten for the testing while trying to keep up in residency is terrifying. Any thoughts?

I did the same thing in the middle of my Ph.D. program and decided not to go back to eating gluten. I was actually so desperate to lose the chronic stomach problems that were plaguing me that I did a lamb/rice/lettuce elimination diet. The tests are not that good, and even if you are not celiac by the tests, the diet has changed your health dramatically.

As you will learn, people in this country are overly attached to diagnostic tests, diagnostic labels, and pills. If gluten makes you sick, use your common sense and don't eat it. Pure and simple. I am hoping that in 10 or 15 years there will be a test that doesn't require months of gluten challenge. Until then I am eating a celiac diet and assuming that gluten is triggering autoimmunity. (I have Hashimoto's as well.) The only downside to being undiagnosed is that you're stuck eating a celiac diet where you might be able to have some gluten occasionally if you're just gluten sensitive, but I find I generally feel better if I'm careful about gluten anyway. I should mention that I was also lucky enough to run into a doctor at student health who said if my lifelong gastritis, IBS, fatigue, aphthous ulcers, and borderline low iron all improved gluten-free as far as he was concerned I was probably celiac. He ordered calcium, iron, and B12 blood levels and offered anti-EMA testing if I gluten challenged. I was already hypothyroid and being followed for that.

As far as what you tell people, who cares? Nobody is going to look up your medical records when you say you're celiac and cannot eat gluten. You say what you need to get safe food and appropriate care. Heck, you even have the M.D. to make the diagnosis official.

By the way, do a little reading while you're here. There are a lot of posts from people who feel the need for a diagnosis and can't get one, who can't seem to stick to the diet, who are more sensitive to gluten than doctors tell them they should be, and people who have been called hypochondriacs when they insist they are gluten-sensitive and the tests are negative. We wish doctors would understand better.