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I Got Officially Dx'd Today

squirmingitch

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squirmingitch Veteran
squirmingitch
Posted

I actually got an officially confirmed dx today! Something I never thought would happen until they came up with a test that did not require you to gluten yourself.

I went to a very progressive & savvy NP. He listened well & was quite familiar with celiac disease and dh which really surprised me & the nurse who took my vitals beforehand was also well versed in celiac. I brought him all my records as well as my photos of my dh & of course myself with some dh still giving me fits. He read my records of hysterectomy of neuro problems, my bone scans & joint problems, arthritis, MRI of spine, CT scan of my fatty liver & listened to what I had been through as well as how much I have improved since going gluten-free. He listened to my family history. And he said, "You figured it out on your own. You are right. You are celiac with dh." You could have knocked me over with a feather! He ordered tests for B-12, D3, complete check of iron, cortisol, TSH, T3, T4, CBC, CMP, lipids, DHEA (??? haven't looked that up yet) as well as T. Testosterone, Progesterone & something else I can't read Estrociel????

Wow! I'm sort of stunned. I had a "gut" instinct about him but didn't really expect my gut to be so right.

I think I just got really lucky!

It was interesting that he had a folder full of copies of the Paleo diet in the exam room. And he said to me, "It's amazing HOW many diseases are quite simply food related".

He has spoken to the compounding pharmacy to make me up some gluten-free, iodine free, soy free, salicylate free "Tylenol & Aleve" type pain relievers.

He also wants me to begin taking MSM 1 gm. 2 x day for the joints/bones.

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Andi O Newbie
Andi O
Posted

WAHOO!! Congratulations!! I'm hoping for the same outcome with the new Dr I am being referred to. She's a D.O.

So glad you found someone to look at the whole big picture!! :) I agree- it's what we put into our bodies that make us sick.

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted

I actually got an officially confirmed dx today! Something I never thought would happen until they came up with a test that did not require you to gluten yourself.

I went to a very progressive & savvy NP. He listened well & was quite familiar with celiac disease and dh which really surprised me & the nurse who took my vitals beforehand was also well versed in celiac. I brought him all my records as well as my photos of my dh & of course myself with some dh still giving me fits. He read my records of hysterectomy of neuro problems, my bone scans & joint problems, arthritis, MRI of spine, CT scan of my fatty liver & listened to what I had been through as well as how much I have improved since going gluten-free. He listened to my family history. And he said, "You figured it out on your own. You are right. You are celiac with dh." You could have knocked me over with a feather! He ordered tests for B-12, D3, complete check of iron, cortisol, TSH, T3, T4, CBC, CMP, lipids, DHEA (??? haven't looked that up yet) as well as T. Testosterone, Progesterone & something else I can't read Estrociel????

Wow! I'm sort of stunned. I had a "gut" instinct about him but didn't really expect my gut to be so right.

I think I just got really lucky!

It was interesting that he had a folder full of copies of the Paleo diet in the exam room. And he said to me, "It's amazing HOW many diseases are quite simply food related".

He has spoken to the compounding pharmacy to make me up some gluten-free, iodine free, soy free, salicylate free "Tylenol & Aleve" type pain relievers.

He also wants me to begin taking MSM 1 gm. 2 x day for the joints/bones.

That is awesome Squirming, so pleased for you! Glad you got a real good doc to look after you and protect you. So glad you listen to "your gut" once again. ;)

Sure wish I had insurance and a good general doctor around here. I hope once I get better I can handle a different job besides in home care sitting on my bum most of the day.

Ninja Contributor
Ninja
Posted

Squriming!! That's fantastic!!! So happy for you! :D

GlutenFreeAustinite Contributor
GlutenFreeAustinite
Posted

Congratulations!!!!

GFinDC Veteran
GFinDC
Posted

Great news Squirmy! Your NP sounds like a keeper. :)

IrishHeart Veteran
IrishHeart
Posted

Squirmy, my friend,

It is incredibly validating to be told what we already know, isn't it? :)

Good for you.

Glad he is taking good care of you regarding follow-up care.

Looks like you've got yourself a good one.

I am so happy for you!

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squirmingitch Veteran
squirmingitch
Posted
  • Author

Thanks everybody!!!!!

Before I forget --- the doc actually said to me that the testing for celiac was so inaccurate & there is a too large % of false negatives in the celiac panel as well as a worse % for the dh biopsy. And then he went on to talk about how the endoscopy misses so many celiacs also. It was like he had been reading this board & saying all the things we say! I was stunned to say the least.

Yes, IH, it is incredibly validating to be told what we already know.

But I'll tell you guys --- it's so weird --- I suppose I should be "over the moon" but the truth is that I was perfectly content & quite comfortable with being self dx'd. I'm sort of a rebel if you will and I did not go with the intent of getting a dx. I only brought all those records & such to get him to take me seriously enough to agree to run the tests I knew I needed & so many have had problems getting their doc to run. I did not have a single doubt in my mind that I was celiac with dh. And I could live with that forever. And woe be unto the person who doubted me. I would tell ppl I had an official dx with no problem if they should be "that kind". And seriously, even if you end up in the hospital ---- when have you ever had to prove you had a dx of this or that or the other disease in your entire life? They don't ask you for documentation of your dx. Do they ask you for proof you are diabetic? No. You say it, you ARE it.

Just like life isn't it? When you don't give a darn about having an official dx, one drops right in your lap. Yet some search & search & search to get an official dx & can't get one no matter what. Life's weird that way.

eatmeat4good Enthusiast
eatmeat4good
Posted

Hey Squirming!

Congratulations on the diagnosis!

And for figuring out yourself long before he did!

It's so much easier to diagnose when someone has already done the work for you!!

Hey, when your DH heals...you will need a new name!!!

But for now...the lil comment about how he had Paleo information in his office piques my curiosity!

I swear I healed faster the second year when I went Paleo....

Instead of Squirming Itch...

You can be Paleo _itch!!

:D;)

squirmingitch Veteran
squirmingitch
Posted
  • Author
laugh.giflaugh.giflaugh.gif Eatmeat! I've thought about when I stop itching & changing my name. But I think I may just keep it to remind me never to get to big for my britches!laugh.giflaugh.giflaugh.gifwink.gif
IrishHeart Veteran
IrishHeart
Posted

You could just "tweak it" if you wanted to:

squirmingitch - free

squirmy-no-mo

itchbegone

me usta squirm&itch

squirmyhasleftthebuilding

use a weird symbol like PRINCE did maybe something like !>#

for "the artist formerly known as squirmingitch"

or go completely radical and just call yourself

Earth&StarlightRainbowHaze

squirmingitch Veteran
squirmingitch
Posted
  • Author

You could just "tweak it" if you wanted to:

squirmingitch - free

squirmy-no-mo

itchbegone

me usta squirm&itch

squirmyhasleftthebuilding

use a weird symbol like PRINCE did maybe something like !>#

for "the artist formerly known as squirmingitch"

or go completely radical and just call yourself

Earth&StarlightRainbowHaze

You're cracking me up!laugh.giflaugh.giflaugh.gif

cahill Collaborator
cahill
Posted

Congratulation squirmingitch , Your story is very similar to mine. I walked in My doc's office with every test result I could get my hands on and a 4 inch thick folder of medical records .

I was numb at first when he CALMLY looked at me and said " you are celiac" but later there were MANY MANY other emotions.

The validation is bitter sweet sometimes.

Your doc sounds like a keeper :)

beachbirdie Contributor
beachbirdie
Posted

Cryin' for happy for you! That is wonderful news!

action-smiley-033.gif

squirmingitch Veteran
squirmingitch
Posted
  • Author

Thanks chill & beachbirdie!

IrishHeart Veteran
IrishHeart
Posted

Cryin' for happy for you! That is wonderful news!

action-smiley-033.gif

just a fantastic clapping emoticon!!

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