Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Got Officially Dx'd Today

squirmingitch

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.