Why Do You Need A Diagnosis? (curious) :d

[dazzling]

I see from reading the board that a lot of people are having biopsies done to confirm bloodwork and get a "diagnosis". Is this something that is required in the US?

My doctor never mentioned a biopsy (I wouldn't have one anyway) and said that from my bloodwork I was "borderline" celiac, BUT, if he factored in the results of another test, I was well into the region of being celiac. He told me that it wasn't necessary for me to go gluten-free, but that I would likely feel much better and would recover from my adrenal exhaustion more quickly.

There was no hesitation on my part. I went home, cleaned out my pantry, drove to a gluten-free manufacturer's warehouse (5 hours round trip), bought a bunch of stuff that I found was horrible, went shopping and bought more stuff and started baking my own bread, etc. I find it very easy to stay gluten-free and am just puzzled as to why people need a diagnosis.

From reading here, I now know why I don't have "moons" on my fingernails, have nearly invisible fingerprints and that my anemia was most likely due to malabsorption. Having been gluten-free for a month or so, I rarely have D anymore (which was at the least a daily occurrence for me), I am not craving bread and crackers like I used to (a rice cake with a slice of melted cheese does nicely) and I am rarely hungry. I am still exhausted, my hair is falling out and I have other symptoms (related to the adrenal/thyroid issues my doctor is addressing), but I feel like I am taking responsibility for my own health and I am not worried about being sideswiped by D at an inopportune moment!

I shall stop rambling now...

[psawyer]

An "official" diagnosis may be useful in some situations. For students it can be a means of providing evidence to the school as to why certain accomodations are medically necessary. Reasonable accomodations must be made, if proof of disability can be shown.

But the best diagnosis is a positive dietary response. If you don't need documentation to support your requirement for accomodation, then don't bother.

[dazzling]

An "official" diagnosis may be useful in some situations. For students it can be a means of providing evidence to the school as to why certain accomodations are medically necessary. Reasonable accomodations must be made, if proof of disability can be shown.

But the best diagnosis is a positive dietary response. If you don't need documentation to support your requirement for accomodation, then don't bother.

Thanks Peter. That makes sense and, of course, since I don't have children, it's not something I would think of. (I live outside of Newmarket, so we're neighbours...sort of.)

[psawyer]

There are a couple of good sources of gluten-free products in Newmarket. Ambrosia is on Yonge one block north of Mulock. Just south of Mulock on the east side of Yonge there is another place, Nature's Emporium. They are big on natural and organic foods, but have many gluten-free items. We shop at both of these places regularly.

[Tim-n-VA]

But the best diagnosis is a positive dietary response. If you don't need documentation to support your requirement for accomodation, then don't bother.

The only additional point I'd make is that dietary response is all you need to make the lifestyle adjustments required. A dietary response alone won't tell you if you have celiac versus a traditional allergy or even some digestive problem.

Knowing which type of "response" is happening internally can be important since these conditions happen in clusters. Having celiac makes you a little more likely to have other auto-immune diseases, having a wheat allergy makes you slightly more likely to have other allergies.

You can only self diagnose that you feel better when you don't have gluten, you can't self-diagnose the internal response.

Bottom line the official matters most from the perspective of having a full picture of what you have and what you are also at risk for.

[silk]

From reading here, I now know why I don't have "moons" on my fingernails, have nearly invisible fingerprints

???? Never heard of this and after checking, I don't either??? What's up with this? Can anyone please explain?

[cruelshoes]

I see from reading the board that a lot of people are having biopsies done to confirm bloodwork and get a "diagnosis". Is this something that is required in the US?

I don't think it is "required", but I can think of so many reasons to get a diagnosis before going gluten-free. My son has a 504 plan with the school district that allows him to get a safe school lunch provided from the school district. He also gets modifications to classroom requirements that may cause him to come in contact with gluten (craft projects, cooking projects, etc).

Several drugs are in the works that deal with celiac and gluten ingestion. When and if they ever come to fruition, they will likely require a doctors prescription. Who's to say if the doctors would be willing to prescribe them without a diagnosis?

A diagnosis can help make things more real and help ensure compliance. I know I would be much less likely to be as careful as I am if there was any doubt that I needed to avoid gluten. I have it in black and white with pathology reports and pictures to show how damaging gluten can be to my body.

Finally, circumstances do change, and we all may come to a place where we do really need a diagnosis for something (maybe something I have listed above, or something that I haven't thought of). If I didn't have a diagnosis, and for some reason needed to get one, I would have to start eating gluten again. I was so sick before, I never want to go back there again. By getting the biopsy done in the beginning, I can get it out of my life for good.

I know plenty of people that have not had the biopsy and gone on to be very successful. I think that's great. But for me, I am glad I had it done. Just my gluten-free $.02.

[Worriedtodeath]

Because a definitive dx would give us a direct path to follow with our kids instead of a very sick baby with 3 drs with 3 different ways thoughts on how to resolve her problems and how to proceed from here.

One says it isn't Celiac but an allergy plus lactose intolerance - cut out wheat/diary, keep gluten in ,retry wheat in a few years to see if she outgrew it,

Dr #2 says it isn't wheat allergy but an intestional issue like Celiac see dr # 1 who contradicts dr #2

Dr #3 says it's neither but is a new dx of Non Celiac GLuten intolerant remove gluten for life and let science catch up with us.

Who do we follow??? Personally for myself dr #3 but this is my kid!!!! Who can say who is right???? they each carry their own risks/problems/outcomes/future possibilities. we have to make the best decision we can and just go with what has the least worst outcome situation. A good dx would eliminate all the iffys.

Stacie