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Do I Need An Official Diagonosis?

Raebies

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Raebies Newbie
Raebies
Posted

I was tested for Celiacs a little more than... a year and a half to two years ago. The blood test came up negative. However, I progressively started feeling worse and after my doctor brushed me off when I asked for further tests I decided just to go gluten-free. As a result of the change in diet (its been over a month now) I feel SOOO much better. No more GI symtoms, less gas, I sleep better, I have more energy, and my mental focus is so much better.

My question is, Do I need an official Celiacs diagnosis? A friend told me the only way I can be 100% sure is to go off the gluten-free diet for a month and then get tested. However, even something like a few dribbles of glutenfied steak sauce getting on my plate last week caused me 2-3 days of issues. So I'm really reluctant to go back to a "normal" diet considering all the grief a little cross contamination gives me. Should I just be content to know that I'm "sensitive" to gluten or would it be beneficial to be officially diagnosed? I've had people ask me "Do you have Celiacs?" and then dismiss me when I say I'm undiagnosed but feel worlds better on the gluten free diet. My dad also has Celiacs. He has been officially diagnosed.

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Dixiebell Contributor
Dixiebell
Posted

Welcome!

Do you need an official diagnosis? You would need to be eating gluten, a lot of it, for a least six weeks before testing. If a little steak sauce makes you sick, what would happen if you ate a gluten full diet again? You said your dad has celiac. Then there is a very good chance you do too. The thing is, no one carries their test results around to prove that they have something wrong. And the celiac tests are only about 80% accurate.

Stay around and ask questions we are glad you are here.

Jestgar Rising Star
Jestgar
Posted

Do you need an official diagnosis?

Exactly. Do YOU meed to prove something? (Work, school, etc). Do YOU need a test result in order to follow the diet? Do YOU need to know for peace of mind?

You wouldn't need a medical report to follow a dairy free diet, a low cholesterol diet, a vegan diet, etc, so in terms of practicality, no, you don't need an official diagnosis in order to change your lifestyle.

kitgordon Explorer
kitgordon
Posted

I simply say I have celiac disease. No one needs to know it is self-diagnosed. My mother, grandmother, aunt and 2 uncles all have the "official" diagnoses; I share their symptoms, the diet cured me - I have celiac disease and no one can tell me different. Why torment yourself eating something that makes you ill for 6 weeks and go through invasive testing that may be wrong? I firmly believe most of us are more qualified to say what we have than 90% of the doctors out there!

Raebies Newbie
Raebies
Posted
  • Author

Thanks for all the replies. In answer, I don't need a diagnosis for myself. Even if I tormented myself with going off the gluten-free diet and got a negative test result, I would probably go back on the diet anyway.

One question though, how do I find a doctor who would be sympathetic to my "unoffical diagnosis"? I believe my doctor thinks I'm a hypochondriac. She relucantly did the initial blood test(which came up negative) but waved me off when I asked about doing further testing. I went to her earlier this year about feeling tired and just generally wrung-out. She did some blood tests and was satisfied with "Oh your vitamin D levels are low. Take a suppliment." I drink over a gallon of fortified milk a week. I shouldn't HAVE problems with low vitamin D. Some of my problems cleared up when I moved to a different place that didn't have a normal cat living upstairs (I stopped getting sinus infections). I have two Bengal cats but they don't bother my allergies thus they don't give me sinus infections. But I still felt exhausted all the TIME. So, I went on the diet a month ago without notifiying my doctor and I feel so much better. I haven't had this much energy in years. So, I'm kind of fed up with this doctor. Is there some sort of recommended list of doctors?

Thanks

Rae.

Dixiebell Contributor
Dixiebell
Posted

There is a doctors thread. Just post what city, state you are looking.

Another thing you could do is to call different Dr. offices and see if they are knowledgeable gluten intolerance.

Skylark Collaborator
Skylark
Posted

I self-diagnosed with diet and what my doctor told me is that if I am willing to eat a celiac diet, I do not need an official diagnosis. Gluten makes me sick enough that I would eat gluten-free either way. I opted not to lose months of my life to gluten challenge.

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flutterby Apprentice
flutterby
Posted

Hey Folks,

This remind me of something I have had doctors tell me before. Keep in mind that, although it's important to know what's causing your symptoms, a diagnosis of Celiac is not necessarily a good thing, as it may cause insurance premiums to go up or for you to get denied insurance altogether. What's most important in not self-diagnosing, I believe, is to know that it's not something else that's causing your symptoms.

A few years ago I was tested for hypoglycemia. The tests came back negative but with some obvious irregularities. The doctor's response? "I can't give you a diagnosis as hypoglycemic. However, I strongly suggest you follow a hypoglycemic diet. Also, you do NOT want a diagnosis of hypoglycemia on your record. But follow the diet."

Raebies Newbie
Raebies
Posted
  • Author

Hey Folks,

This remind me of something I have had doctors tell me before. Keep in mind that, although it's important to know what's causing your symptoms, a diagnosis of Celiac is not necessarily a good thing, as it may cause insurance premiums to go up or for you to get denied insurance altogether. What's most important in not self-diagnosing, I believe, is to know that it's not something else that's causing your symptoms.

A few years ago I was tested for hypoglycemia. The tests came back negative but with some obvious irregularities. The doctor's response? "I can't give you a diagnosis as hypoglycemic. However, I strongly suggest you follow a hypoglycemic diet. Also, you do NOT want a diagnosis of hypoglycemia on your record. But follow the diet."

So... I should just say I follow the Celiac diet, I feel better and have done with it?

Skylark Collaborator
Skylark
Posted

So... I should just say I follow the Celiac diet, I feel better and have done with it?

It's one of the simpler and easier options. ;)

Geri02 Newbie
Geri02
Posted

It's one of the simpler and easier options. ;)

You guys have answered some of my questions. I went to a gynecologist a friend told me about to be tested for a Yeast overgowth. I had that and went through that treatment. He also diagnosed me with thyroiditis. My Problems continued. He then ran IgG blood test. He called two days later and told me that I had extremely high level of gluten antibodies and should be on a gluten free diet for the rest of my life. This also explains my low levels of Vitamin D. I had been previously diagnosed with IBS. I had suspected gluten for awhile, but I had weight gain and extreme constipation along with depression, low energy, hair loss, joint pain. Thanks again for helping me to not feel so different.

Raebies Newbie
Raebies
Posted
  • Author

I had suspected gluten for awhile, but I had weight gain and extreme constipation along with depression, low energy, hair loss, joint pain. Thanks again for helping me to not feel so different.

Geri, I feel your pain. One of the reasons my doctor brushed me off is because I was gaining weight, not loosing it. I also had the low energy, depression, and joint pain. My mom was really concerned for a few months before I went gluten free because she said I looked really sick. She said it looked like I was on Predisone because I had "moon face". She had been encouraging me for the better part of a year to go gluten-free. There was just never a good time to start. However, on a cross country car trip with my dad and brother back in October, the gut pain and extreme fatigue hit me so hard that I decided then and there to start eating gluten-free (despite how annoying it is to eat gluten-free on the road). Within a week of going gluten free I immediately lost about 16lbs of water weight and my "moon face" disappeared. Since then I haven't lost any further weight, but my weight has stablized. Before, if I weighed myself in the morning and then again at night, I could see as much as 10lbs difference. My energy also came back, my depression went away and my joint pain is feeling a little bit better (though it has only been 6weeks since starting gluten-free). I've also not been catching a full blown version of whatever sickness makes its way around the office. Before, I would catch the worse case senario of what everyone else had. I can feel myself fighting off whatever it is, but I've only been getting a mild case of it.

Its been wonderful thing. Thanks everyone for your replies, I have offically decided I don't need to poison myself for 6 weeks in an attempt to get an offical diagnosis for something I know already.

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