How Important Is A Dignosis?

[possiblyglutensensitive]

From my other thread you may know that I only was tested for tTG and nothing else and if I get a negative result it could be false because that test alone is not enough.

But my doctor wouldn't hear of having me take more tests (celiac and gluten sensitivity wise).

Now I am worried about getting a false negative and I am wondering why not just go on the gulten free diet and see if I feel better in a few months?

how important is a diagnosis? is it so that you will be SURE you need to be gluten free so you will be more commited to gluten free living? (whether you are gluten sensitive OR celiac)

Or is it that it's important to assess for intestinal damage and for doctors to check if things are healing well?

[AzizaRivers]

There are a few things to think about when considering the importance of a formal diagnosis.

Is it important to you, as you said, to have a formal diagnosis so you will not question your diet?

Do you need a diagnosis to gain the support of family members?

Are you going to try to obtain some kind of compensation (food stamps, etc.) for special food? Some countries or states do this.

There are several reasons people try to get an official diagnosis. Some people pursue it for those reasons, and some people are content just going gluten-free and moving on. The latter is very common, as for some, diagnosis is not cut and dry and much is still not understood about celiac.

[possiblyglutensensitive]

There are a few things to think about when considering the importance of a formal diagnosis.

Is it important to you, as you said, to have a formal diagnosis so you will not question your diet?

Do you need a diagnosis to gain the support of family members?

Are you going to try to obtain some kind of compensation (food stamps, etc.) for special food? Some countries or states do this.

There are several reasons people try to get an official diagnosis. Some people pursue it for those reasons, and some people are content just going gluten-free and moving on. The latter is very common, as for some, diagnosis is not cut and dry and much is still not understood about celiac.

Thank you!

[runningcrazy]

Hi,

I tested negative 3 times. I went gluten free anyway after that even though my doctor thought it was crazy. My whole list of symptoms magically dissapeared. For me a diagnosis is not necessary, so if you can keep yourself strictly gluten free and start feeling better you may find that feeling better is all that matters.

[mushroom]

Many people, even with an official diagnosis, receive no or little follow-up care for their celiac disease, and very little is necessary. If you self-diagnose, you need to be sure that your symptoms resolve (taking into account that you may uncover additional food intolerances once you go gluten free) and that there are no other underlying causes for your problems.

You need to be aware that gluten intolerance is a problem of malabsorption, so you may well be deficient in many nutrients that really should be measured by blood test, including iron, vitamins D, B12 and folate among others, also potassium, calcium, zinc. Getting your nutrients in proper balance is one of the most important aspects of proper healing with gluten intolerance. If you have a doctor who will work with you on ordering these tests, then there is not a problem. I am just concerned since your doctor would not order the full celiac panel that she might not do this for you. Do you have access to another doctor? Taking supplements on your own runs the risk of not taking enough (sometimes we need prescription strength supplements) or of taking too much (sometimes too much can be toxic). You may also need your thyroid function checked.

Then there is actually an advantage to not having a celiac diagnosis in your files. When it comes to health or life insurance you have no pre-existing condition in your medical records. How important this will be for health insurance in the future we don't yet know, but it is important for life insurance purposes.

[kmhane]

I've had terrible stomach issues for 30 yrs... my friend called me up a few yrs ago and said she thought I had a different disease. I didn't but under the same list I found celiac disease. At first, like many I went to a doctor to get tested. He actually didn't fuss about giving me the upper endoscopy because my mom has Chron's and Ulcerative Colitis. I was so happy to finally put a name to my health problems! Well, it came back negative and he wouldn't go any further because I had no genetic link. Also make sure if you get tested you stay eating gluten for 6 months prior (my doctor didn't even know I was supposed to do that, an obvious reason I got a negative result). I tell him that going on a trial gluten free diet made me feel much better, so he assumes I'm gluten intolerant and tells me to just stay on the gluten-free diet if it makes me feel better. So I did, I've been completely gluten free for over a year! The results were amazing... the bloating, constipation, migraines, fatigue, nausea, etc all went away! I lost 30 lbs within about 6 months! I feel great!!!! The funny thing is I finally have a link on my dad's side but I'm not too worried about it anymore, except for watching and making sure my children don't have it. Obviously something was wrong and the gluten-free diet worked! I don't care what people want to call it... all I know is I feel so much better!

[cap6]

There is a definite advantage to not having an "official" celiac diagnosis in your medical files as mushroom said. Any insurance that you apply for - medical, life, long term care - will look at pre-existing. Doesn't matter how many tests etc you've had run it's that official diagnosis they look at. That's why I haven't pushed for anything official to be in my medical records. Unofficial is fine with me.

[Skylark]

I was never formally diagnosed. It hasn't been an issue for me at all. You don't require much special care as a gluten-free celiac if you're really careful with the diet.

If you're likely to cheat with the gluten, it might we wise to pursue diagnosis. Gluten makes me feel awful so I stick to a very careful diet because it works best for me.

[Bananas]

My doctor has told me, that even though I don't have Celiac Disease (just "IBS"), that I should not eat it. However, as I've been low gluten for about 6 years, but my symthoms have gotten worse, I think I've been leading my Doctor to this diagnosis. If only I knew, without a shadow of a doubt, I think I

[salexander421]

I think the whole "getting a diagnosis" thing is totally a personal decision. Some people feel the need for it while others don't. Me and my 2 daughters are all undergoing a gluten challenge at the moment. Me and my husband both feel that we need to go through the testing process. Whatever the results we will be going gluten free in the end so it probably doesn't even matter, it's just something we feel is necessary. I think I feel more strongly about finding out with my girls because I want to know for their sake. They're young and I don't know how they'll take it if they find out one day that mommy just stuck them on some crazy diet without even trying to find out if they had this serious condition Myself on the other hand, I don't feel as strong of a need to know for sure. I know it makes me feel crummy. I guess I'm just one of those people who has a hard time putting things out of my mind if I don't at least try to get some answers. The "what ifs" just kind of stick around. 3 months is a short time compared to the rest of my life. All that being said, if you think you would stick to the diet without the diagnosis and not drive yourself crazy with continued "what ifs" then forget about testing. But, if you're one of these need to know people then go for the testing and just try the diet no matter what the results. Hope I'm making sense, I am typing this on a glutened up brain