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 Was Told Wrong

w8in4dave

Recommended Posts

w8in4dave Community Regular
w8in4dave
Posted

Try to make this short:

   Went to Doc. Asked him for the Celiac test. he had it done , plus regular blood terst :) but the girl didn't take enuf blood for Celiac, the place that was doing the blood test called, I went in and gave more blood, they even took more , just in case. So I went home and waited. Dr. office calls a few days later and the girl said my bllod test were all normal. I asked her, What about my celiac test, she said your blood test were all normal, sooo in my head , no Celiac... I was thinking, ok I must be just sensitive . What ever!! So that was a couple weeks ago. Today I got a letter in the mail asking to call the Dr's office , I do,  they told me my Celiac test was positive ... well I argued and she said my test was right there in front of her... I don't think my Celiac test had been in yet when my other blood tests were in .. So Wow!! was my 1st thought!!! 2'nd thought was Yay! I have answers!! 3rd thought! I have to go back on gluten to go see another dr. I can do it!! I will make sure I take care of me!!! Thanks for everything!! I love this site!! I had Nooooooo idea how long a Celiac test took!! Answers! Are wonderful!! 

 

If you get a blood test for Celiac , Ask how long before the test come back!!! Altho the blood draw person may give a stupid answer like "ohhh a couple of days" 

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

Celiac.com Sponsor (A8-M):


powerofpositivethinking Community Regular
powerofpositivethinking
Posted

so glad you're getting answers!! 

 

Try to make this short:

   Went to Doc. Asked him for the Celiac test. he had it done , plus regular blood terst :) but the girl didn't take enuf blood for Celiac, the place that was doing the blood test called, I went in and gave more blood, they even took more , just in case. So I went home and waited. Dr. office calls a few days later and the girl said my bllod test were all normal. I asked her, What about my celiac test, she said your blood test were all normal, sooo in my head , no Celiac... I was thinking, ok I must be just sensitive . What ever!! So that was a couple weeks ago. Today I got a letter in the mail asking to call the Dr's office , I do,  they told me my Celiac test was positive ... well I argued and she said my test was right there in front of her... I don't think my Celiac test had been in yet when my other blood tests were in .. So Wow!! was my 1st thought!!! 2'nd thought was Yay! I have answers!! 3rd thought! I have to go back on gluten to go see another dr. I can do it!! I will make sure I take care of me!!! Thanks for everything!! I love this site!! I had Nooooooo idea how long a Celiac test took!! Answers! Are wonderful!! 

 

If you get a blood test for Celiac , Ask how long before the test come back!!! Altho the blood draw person may give a stupid answer like "ohhh a couple of days" 

kareng Grand Master
kareng
Posted

Good example of why I tell people to get a copy of the report!

1desperateladysaved Proficient
1desperateladysaved
Posted

Oh, that's the story.  Thanks.

kareng Grand Master
kareng
Posted

Oh... And I forgot! Welcome to the club!

Disclaimer: due to the increase in Celiac and NCGI diagnoses, the secret decoder rings and official membership pin are on back order. You should receive yours about the same time they stop growing wheat in Kansas.

nvsmom Community Regular
nvsmom
Posted

Wow.  i'm glad that you know! :) If you have to do a gluten challenge, I hope it's not too hard on you.

Gemini Experienced
Gemini
Posted

Oh... And I forgot! Welcome to the club!

Disclaimer: due to the increase in Celiac and NCGI diagnoses, the secret decoder rings and official membership pin are on back order. You should receive yours about the same time they stop growing wheat in Kansas.

I almost had tea coming out my nose on that reply, Kareng...... :lol:

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

Celiac.com Sponsor (A8-M):


w8in4dave Community Regular
w8in4dave
Posted
  • Author

And here I was expecting a ring and pin!! Wheat in Kansas? I have wheat growing down the road from me!! 

Thanks for your replies!! It is wonderful to know!! I Have wonderful friends that are very supportive of me with this!! I am so blessed!! Now my poor daughter!! Her husbands mother was Diagnosed with Celiac about 6 months ago. So my Daughters 3 Kids have a double whamy!! I have told my oldest daughter but not my son. I need to give him a call and let him know. I should tell my sisters also. I guess! Is this something every Family member on my side should know? Most everyone lives so far from me. 

nvsmom Community Regular
nvsmom
Posted

... I guess! Is this something every Family member on my side should know? Most everyone lives so far from me. 

That's great you are letting everyone know. It can really spread out through a family. On my dad's side, his maternal aunt and one of my cousin's kids has celiac disease, but I suspect another cousin. On my mom's side, I have a first cousin with it, and a couple of more that I suspect. I think if everyone was tested there would be a couple of more cases.

notme Experienced
notme
Posted

welcome to the best club you never wanted to join  ^_^

 

wait.  you mean EVERYBODY gets a secret decoder ring????!!!!  so much for my inflated ego and mad celiac skills.  so, does everybody get the tinfoil hat, too???  geez.  what a rip... <_<

kareng Grand Master
kareng
Posted

welcome to the best club you never wanted to join  ^_^

 

wait.  you mean EVERYBODY gets a secret decoder ring????!!!!  so much for my inflated ego and mad celiac skills.  so, does everybody get the tinfoil hat, too???  geez.  what a rip... <_<

 

As I remember...the tinfoil hat was your idea....  Open Original Shared Link

IrishHeart Veteran
IrishHeart
Posted

 

As I remember...the tinfoil hat was your idea....  Open Original Shared Link

 

 

Checking the air waves for incoming celiacs from space again, K??

 

well, w8tin4 dave.... :)

 

All I can say is: Welcome to the family. Read all you can. Ask questions. Live a long and happy  gluten-free life.

 

I highly recommend this book for you and your family:

 

Real Life with Celiac Disease

by Melinda Dennis and Daniel :Leffler

 

Open Original Shared Link

 

and the Newbie 101 thread which was written by some chick we know..

 

I will refrain from commenting further on the inept way you were given the results of your blood work, emphasize that you should always get copies of everything ever run in a lab and I have no idea why it took so long for you to get the celiac panel results as they usually come back within days around my neck of the woods. And I live in the woods.

 

Whatever!....you know now and your positive attitude will be your best advantage. ;)

 

I'll go check on the shipment of decoder rings, pins and the latest addition...tee shirts that say 

 

"Gluten free is sexy. Like me." 

kareng Grand Master
kareng
Posted

 

As I remember...the tinfoil hat was your idea....  Open Original Shared Link

 

 

This is Arlene....Not me!  B)

IrishHeart Veteran
IrishHeart
Posted

This is Arlene....Not me!  B)

 

 

'scuse me. K....my bad

 

lemme try that again....ahemmm

 

" Checking the airwaves for incoming  celiacs from space, Arlene?"

notme Experienced
notme
Posted

 

As I remember...the tinfoil hat was your idea....  Open Original Shared Link

ohhh, yeah.....  prototype........

 

This is Arlene....Not me!  B)

see what she did there?   B)

 

'scuse me. K....my bad

 

lemme try that again....ahemmm

 

" Checking the airwaves for incoming  celiacs from space, Arlene?"

NOTME!!!  (whistling......)   :)   maybe.......

IrishHeart Veteran
IrishHeart
Posted

thinking to myself....after this, w8tin4dave may not WANT to be part of this lunatic family.... ^_^

kareng Grand Master
kareng
Posted

thinking to myself....after this, w8tin4dave may not WANT to be part of this lunatic family.... ^_^

I think W8 has a sense of humor. If not, I have wasted some of my best material!

MissyBB Explorer
MissyBB
Posted

Oh... And I forgot! Welcome to the club!

Disclaimer: due to the increase in Celiac and NCGI diagnoses, the secret decoder rings and official membership pin are on back order. You should receive yours about the same time they stop growing wheat in Kansas.

 

 

That was funny! Thanks for giving me a smile before I even finished my first cup of coffee this morning.  :D

IrishHeart Veteran
IrishHeart
Posted

I think W8 has a sense of humor. If not, I have wasted some of my best material!

 

yes!! I know she does, otherwise I would not have taken so many liberties myself.  :lol:

 

That was funny! Thanks for giving me a smile before I even finished my first cup of coffee this morning.  :D

 

apparently, you have NOT wasted your best material, K!

 

Now if we can get her to spit the coffee on the laptop, then we have really done our jobs!

 

Good morning, Missy BB! ;)

frieze Community Regular
frieze
Posted

see, you would have gotten me with spitting the coffee, BUT, I am wise to ya, lol. make sure I don't read till after I swallow.

IrishHeart Veteran
IrishHeart
Posted

see, you would have gotten me with spitting the coffee, BUT, I am wise to ya, lol. make sure I don't read till after I swallow.

 

Took me a while to catch on to the morning coffee lesson, then if I cruised by later on the day, I'd get caught with the cocktail spit.

 

(Shroomie liked to make fun of me for that one) :)

 

Now, I am a pro. I sip, swallow, put it DOWN on the table next to me... and, then read. 

 

ack! So many mental machinations to perform...mutter mutter mutter

w8in4dave Community Regular
w8in4dave
Posted
  • Author

And here I was expecting a ring and pin!! Wheat in Kansas? I have wheat growing down the road from me!! 

Thanks for your replies!! It is wonderful to know!! I Have wonderful friends that are very supportive of me with this!! I am so blessed!! Now my poor daughter!! Her husbands mother was Diagnosed with Celiac about 6 months ago. So my Daughters 3 Kids have a double whamy!! I have told my oldest daughter but not my son. I need to give him a call and let him know. I should tell my sisters also. I guess! Is this something every Family member on my side should know? Most everyone lives so far from me. 

I hope you all seen this!! Lol yes I have a sense of humor! Haha I will be w8in4aring!! Hopefully 1 carat upscale diamond!! Maby a chocolate diamond? Every one LOVES chocolate!! :)

 

Wipes coffee off of computer screen.. Ohhh it from the other side!! 

w8in4dave Community Regular
w8in4dave
Posted
  • Author

So should I go back on Gluten before I see this gastroenterologist???? I have already been diagnosed! I actually don't think I was totally off of gluten anyway! There are some hidden things I didn't know about!! I had a salad the other day and it sent me right to the restroom!! Here I foind out the Blue Cheese is glutenized!! I think I remember reading that , but totally forgot!! Really!! How long does it take to be Totally Gluten Free anyway!! ???

kareng Grand Master
kareng
Posted

Blue cheese is safe for Celiacs. Not sure who made your salad? If it was purchase somewhered, that may be your problem. It is possible Blue cheese dressing might have flour in , I guess.

GlutenStinks15 Explorer
GlutenStinks15
Posted

Ok so wait, seriously, no ring? I'm so upset right now! What about a t shirt? Can I get a t shirt? :D

 

Glad you're getting answers. So many Dr's give misinformation so do GOOD research before you see GI. One GI told my neice, "well, I want to do endoscopy to see how much damage there is to see how much gluten you can have on a regular basis." When I heard that, I screamed, "FIND ANOTHER GI !!"

 

They just DON'T always know.

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. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      8

      Can You Really Trust Gluten-Free Menus? What Every Celiac Needs to Know Before Eating Out

      Thanks this is helpful!
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fermented foods, Kefir, Kombucha?

      very interesting thanks for the info
    3. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    4. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    5. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,914
    • Most Online (within 30 mins)
      7,748
    Momxiety
    Newest Member
    Momxiety
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.