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I Found My Diagnosis Not My Doctor, And It Bothers Him.


I hate gluten

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Jestgar Rising Star
Physicians, like any other profession, follow the Bell curve. Some are great, some are horrendous, most are average. Seek the great, avoid the horrendous, educate the average.

There. I'm glad I could wrap that all up for you all so neatly! :P

Aw heck! :o Where were you earlier?? You could have saved us 4 pages of whining! :rolleyes::P:lol: :lol:


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TrillumHunter Enthusiast

Seriously though, Sara Beth, I hope you don't get stuck on the doctor that let you down. It is what it is. You can do your best to help him learn but you can only led a horse to water, right? There are good doctors and even an average doctor can help you if you are clear and upfront about what is going on. And with celiac the chances are you are going to need some medical intervention at some point. I have needed lots of help dealing with the fallout of not being diagnosed for so long. This is a good place to vent and let others help you put it into perspective.

JNBunnie1 Community Regular
I added bold to the part of the post I'm referencing, left the rest for context.

I think the point really would be that you can't draw any valid statistics from either side because of the sensational nature of bad doctor stories and the less dramatic nature of good doctor stories. The issues isn't using the 57 as a guide line in how you look at stuff. The problem would be if you tried to say that 95% of all people aren't diagnosed in a timely manner.

Oh, sure. I can only say that (about) 8 of 10 people I'm familiar with have a negative story, I don't know what life is like for the millions I haven't spoken with.

MollyBeth Contributor
Do you have a problem with the specific link or just the fact that there is a chance that someone could have put incorrect information on wikepedia?

I have no problem with the link. I have not researched any of the information on the link to verify whether it is correct or not. Chances are...it probably is. With wikepedia there is always the chance though that the information is incorrect. Some people go in and change pages as a joke. I was simply pointing out that one should not make and argument and use wikepedia as their sole source. I work in Tv news and I would be laughed out of the newsroom if I started quoting wikepedia pages. It can be a good starting off point though when doing research if a person follows the sources referenced at the bottom of the page as jestgar pointed out.

Tim-n-VA Contributor

Edited to remove entire comment.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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