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. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • 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.
×
×
  • 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.