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Just A Funny Thing My Doctor Said...


Rowena

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Rowena Rising Star

I had to share this, as I recently asked my doctor for some advice on things. But she openly admitted that she didn't know all the answers... (Mainly it was to my question about facial cleanser) So she referred me to a forum where I could ask the very question I had. Guess which one it was?

Yup you got it. This one. Sorry I just had to share that with you guys. I thought you all would find it funny too.


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GlutenFreeManna Rising Star

You've got a GREAT doctor there! It's rare to find one that will admit they don't have all the answers....Hold onto her!

Rowena Rising Star

You've got a GREAT doctor there! It's rare to find one that will admit they don't have all the answers....Hold onto her!

Its true, and she'll be the first to say I need a second opinion, even though she's positive about her diagnosis. (Fact is she has) She also does not remove ANY possibilities from the picture... Which is good because my last doctor did. And she was an arrogant, "I know everything Don't question me, I tell you what you must do and you have no say in the matter."

Jestgar Rising Star

So she referred me to a forum where I could ask the very question I had. Guess which one it was?

Yup you got it. This one.

No pressure or anything gang. Now that we're physician recommended.

jerseyangel Proficient

Yup you got it. This one.

Wow--that's quite the compliment! :D

kareng Grand Master

The boys pediatrician told me he didn't understand their blood tests. What could I find out? ( found out they weren't positive for celiac). A bit frustrating but at least he is willing to listen to new info.

Skylark Collaborator

Wow, that's quite the compliment. :)


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mushroom Proficient

This is the best place I know of to come for info :D (Not talkin' about me own here :unsure: )

'

Loey Rising Star

I had to share this, as I recently asked my doctor for some advice on things. But she openly admitted that she didn't know all the answers... (Mainly it was to my question about facial cleanser) So she referred me to a forum where I could ask the very question I had. Guess which one it was?

Yup you got it. This one. Sorry I just had to share that with you guys. I thought you all would find it funny too.

Every time I do a google search for information on something it always has at least five links to this forum. It could be because all of you are the smartest folks I've ever met!!!!!!!!!!!!

Sounds like you have a great doctor. I miss my old doctor from NJ. He was compared to House but he just had a dry sense of humor that you had to "get." I got it. He was a brilliant diagnostician and if I had my colonoscopy when he wanted me to (and had not been using Immodium for years and not telling him about it) I'm sure that celiac would have come up a lot sooner. He sent me to a wonderful GI who did all the tests she could. I was bedridden for 6 weeks after taking Augmetin and he thought it was -C-Dif. He sent me to a GI at that point. I was literally moving to a new town/state the day after I got all of my test results. My old GI wanted me to have a capsule endoscopy as soon as I found a new GI. She thought the celiac had gone undiagnosed for a long time an as concerned about organ damage. My new GI didn't think it was necessary. I was all right for about a month following the gluten-free diet and then had a flare. After being in excruciating pain for 5 weeks (and having the pain also move vertically under my breastbone in addition to the abdominal and lower back pain) he finally ordered the test. Still rather dismissive and treating me like a nut job. Then he called me the day after the test (they had told me it would take 2-3 weeks to read the results) and lo and behold they found an ulcer. Total 360 in his attitude. Not dismissive and my calls are returned immediately.

I'm having a biopsy of the ulcer on November 12th. I now live in a VERY small town with a small hospital. He wants to use a special anesthesiologist because of certain meds I'm on. If I still lived in my old town the biopsy would have been done by now because I used a large teaching hospital and they always had the best anesthesiologists. Have to admit the release form was scary. My hubby says it's standard CYA but they might wind up doing more than the biopsy if they find something else.

I just want to get better so I can get a job and have a somewhat normal life. I'm an unemployed elementary and special education teacher (went back to grad school at 50 after having an exciting first career and then being a stay at home mom after having a child at 40). I taught for 4 years while in grad school and can't even imagine doing that right now. I'm also a resource geek so if anyone ever wants me to research anything just let me know (of course some of the links will lead back to this wonderful forum)

Loey smile.gif

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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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