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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    2. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks. Even at 8000 I felt no noticeable difference. Then after...
    3. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

      I don't know if I am getting sufficient Omega Threes. I read about phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    4. Scott Adams
      0

      Gluten-Free Cantonese Steamed Fish with Ginger, Scallions, and Sizzling Oil

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      results from 13 day gluten challenge - does this mean I can't have celiac?

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue. I have eaten a supposedly high lectin diet (I say supposedly because lectin...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
×
×
  • 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.