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

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

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

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

1desperateladysaved Proficient

Oh, that's the story.  Thanks.

kareng Grand Master

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

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

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

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

... 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

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

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

 

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

 

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

 

 

This is Arlene....Not me!  B)

IrishHeart Veteran

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

 

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

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

kareng Grand Master

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

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

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

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

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

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

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748

    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.