Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

New Member. Had To Go To Medical School To Figure This Out!


  • Please log in to reply

44 replies to this topic

#31 a1956chill

 
a1956chill

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,365 posts
 

Posted 21 March 2014 - 10:16 AM

Celiac Log: Day 1 of gluten challenge. 

 

I ate a positively delightful bavarian cream filled donut last night at 7:00PM.  I expected to experience symptoms by 11:00PM as it usually takes the gremlins about 4 hours to strike in my experience.  Naturally the roiling stomach cramps and unmentionables came on at 2:00AM instead.  (P.S.  Sitting on the can until your feet go to sleep from sciatic compression really sucks.)  Score:  Gluten: 1  Me: 0

Sorry Deekle that this is happening for you :(  this is why many of us do not complete a gluten challenge.

I would rather not have a "formal " diagnosis then have done a gluten challenge.I got my diagnosis in a very round about way  :P .

 

Matter of fact when my GI mentioned me  doing a gluten challenge he was teasing me and TOTALLY joking ,, cracked him self up so much he almost fell off his chair laughing . :o


  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


Celiac.com Sponsor:

#32 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 21 March 2014 - 10:32 AM

DEEKLE:  (P.S.  Sitting on the can until your feet go to sleep from sciatic compression really sucks.) 

 

IRISH: amen, brother.....and I think I just had a flashback. :ph34r: 

 

Sorry you are having pain  :( and there's no way in HELL I'd do what you're doing...not even for a zillion bucks. My brain would be fried by day 4.

 

You are one brave soul.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#33 Fritz_in_pa

 
Fritz_in_pa

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 21 March 2014 - 01:50 PM

 @ Deekle .. thanks for your service and thanks for this post!!!

 

Sorry Deekle that this is happening for you :(  this is why many of us do not complete a gluten challenge.

I would rather not have a "formal " diagnosis then have done a gluten challenge.I got my diagnosis in a very round about way  :P .

 

Matter of fact when my GI mentioned me  doing a gluten challenge he was teasing me and TOTALLY joking ,, cracked him self up so much he almost fell off his chair laughing . :o

I am new here and I am new to gluten free.  there is too much information here to weed through in such a short time, but I have been wondering why somebody would do the gluten challenge??  I am not celiac or may be and dont know,,, but I know what happens when I do eat gluten and there is now way in hell I am going to do it voluntarily!!!  

 

So I am still unclear.. what is the benefit to doing the gluten challenge?? I understand that  deekle has multiple things going on and may benefit from getting more clear information.   But for people like me that are sure it is the gluten that is affecting them,,, well is there a reason I should consider this challenge??

 

Not steeling your thread... just looking for answers...

 

@ Deekle,, How are you doing now?


  • 0
Scott

Please ignore my spelling... I can't type
              
" Gluten, Soy & Corn free since December 2013 "

#34 Deekle

 
Deekle

    New Community Member

  • Advanced Members
  • Pip
  • 21 posts
 

Posted 21 March 2014 - 02:28 PM

Fritz, no problem. The reason for a gluten challenge is simple: No gluten = no autoantibodies attacking your guts. Since I had been gluten free for most of a year, my gut had time to heal. Now I have to jack it up again so that the biopsy will show accurate results (namely: flattening/atrophy of the villi). The why is more complicated. I already had a positive serology test, so we pretty much know I have celiac. Problem is that I may have other issues (maybe crohns or ulcerative colitis). I just want to have the most accurate diagnosis possible so that I know what complications I'm at risk for and how to manage things.
  • 0

#35 Fritz_in_pa

 
Fritz_in_pa

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 25 March 2014 - 09:58 AM

OK , I got it... thanks!

 

Good luck with the tests... hope is goes well!


  • 0
Scott

Please ignore my spelling... I can't type
              
" Gluten, Soy & Corn free since December 2013 "

#36 Deekle

 
Deekle

    New Community Member

  • Advanced Members
  • Pip
  • 21 posts
 

Posted 26 March 2014 - 04:02 PM

Celiac Log:  Day 6 of gluten challenge

 

I have discovered some wonderful new symptoms that I'd never had before.  Most of my symptoms were GI related in the past, with some "brain fog" thrown in.  During this challenge though, I have had the worst acid reflux combined with just crazy lightheadness/vertigo.  It's not all bad though.  I had the some rolls at Texas Roadhouse today for my daily gluten allotment.  I didn't realize how much I'd missed those.

 

Score:  Gluten 2  Me 0


  • 0

#37 Deekle

 
Deekle

    New Community Member

  • Advanced Members
  • Pip
  • 21 posts
 

Posted 03 April 2014 - 04:00 PM

So....endocscopy and colonoscopy went well:  Pathology report will take a week or so, but the doc's initial findings are:

 

drum roll........

 

Celiac Disease (not a big surprise there)

and also Eosinophilic Esophagitis  (That was a new one on me)


  • 0

#38 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 03 April 2014 - 04:07 PM

So....endocscopy and colonoscopy went well:  Pathology report will take a week or so, but the doc's initial findings are:

 

drum roll........

 

Celiac Disease (not a big surprise there)

and also Eosinophilic Esophagitis  (That was a new one on me)

 

 

Welcome to the family, Dear Deekle. 

 

(none of us are surprised either) Sorry. hon. But this is a chance to get well and stay well. !!

 

EoE is often secondary and may very well resolve on its own OFF GLUTEN.

 

Please read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

 

I know you're busy with med school---and have tons to read already---but it will be something you can appreciate and you'll gain some more insight..

 

We're here for you. :)  Dump gluten (and dairy for a few months) and be well.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#39 LauraTX

 
LauraTX

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 1,353 posts
 

Posted 03 April 2014 - 07:50 PM

Glad you were able to get some answers Deekle :)  Time to let yourself heal up!


  • 0
I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

#40 livinthelife

 
livinthelife

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 93 posts
 

Posted 05 April 2014 - 06:46 PM

I was reading your gluten challenge and then, when you stopped, I knew. 

 

Glad you have a diagnosis. It's a new life for sure. Just think of all the energy you'll have to study, study, study!!


  • 0

#41 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,220 posts
 

Posted 07 April 2014 - 05:35 AM

I am glad to hear you got your definitive diagnosis and wish all the best for your recovery!  Sorry, to hear that you have celiac.  I hope you can scrounge up some time to rest and learn what to do.

 

Dee


  • 0

#42 gilligan

 
gilligan

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 148 posts
 

Posted 07 April 2014 - 08:00 AM

This is slightly off post, but what other problems can cause villous atrophy other than celiac?


  • 0

#43 GF Lover

 
GF Lover

    Melanoma Warrior

  • Moderators
  • PipPipPipPipPipPip
  • 1,705 posts
 

Posted 07 April 2014 - 08:35 AM

This is slightly off post, but what other problems can cause villous atrophy other than celiac?

You may want to start a new thread for your question.  You will get more responses from the Community.

 

Colleen


  • 0

HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

gingerbread-man-smiley-emoticon.gif


#44 beth01

 
beth01

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 453 posts
 

Posted 02 June 2014 - 07:10 PM

This might be a totally stupid question, but how can your insurance claim your "symptoms" are a pre-existing condition if it wasn't diagnosed until recently? Do they have a Magic 8 Ball and knew you would some day get a diagnosis for your symptoms? Are they psychic?

 

BTW, welcome to the club.  I was hoping you were still doing your challenge and I could ask you to eat a blueberry donut for me lol


  • 0
Diagnosed April 7th 2014

#45 PenelopeC3

 
PenelopeC3

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 26 June 2014 - 08:32 PM

Hello everyone!

 

I am a new member to these forums, though I have been using celiac.com for the last year or so.  This might get long so if you're not interested, feel free to skip this post.  My saga of celiac disease started more than 8 years ago when the er...shall we say..."digestive product expulsion problems" started.  I had a couple of doctors tell me it was "irritable bowel syndrome" or "Spastic colon" and so for the next 8 years I figured I was just blessed to have a colon that did not like me very much. 

 

In 2012 I was accepted to medical school and started my medical training.  Our third unit was titled "ERG" - Endocrine, Reproductive and Gastrointestinal.   About half-way through the unit we did a case study on Celiac disease.  As we read through the case I started realizing that we were talking about ME!  This is not an abnormal reaction.  Med students think they have the diseases that they read about all the time, so I did what I like to call "The great Captain Crunch experiment of 2012".  First I went completely gluten free for a week.  (Important to note:  this is not enough time to regenerate damaged villi, but it is enough time for me to safely assume that anything in my intestines at the time of the experiment should have been gluten free.)  At this point I was still thinking that maybe I was lactose intolerant.   At the end of the week I had a giant bowl of Captain Crunch with Crunchberries (of course) and milk.  BOOM!  hours later the bloating hit....the gas hit...the earth shattering colonic explosion hit.  I went gluten free for another week.  Next time, I ate my Captain Crunch without milk.   Same result.  I was convinced.

 

Next step:  Diagnosis.  This is the tough part.  First I had to convince the doc that I wasn't just another crazy med student.  Then we had to talk about what to do.  Turns out since I'd been having "problems" for 8 years or so, this was a pre-existing condition, so a referral to GI would not be covered by my school insurance.  Blood tests would be fine though.  My Gliadin IgA was more than 2x the reference range and the Transglutaminiase IgA levels were also very elevated.  It was really looking like I had Celiac Disease, but the gold standard of diagnosis is a biopsy.

 

I went gluten free anyway.  Things have been pretty good for the last year.  I still have some issues, but not anything close to what I'd had before what my friends call "The Wheat Butt"  wake up.  I am finally going to get my biopsy on April 4, but am very certain that Celiac at the very least is on the table and am just hoping not to have any additional diagnoses (Crohn's) to add with it. 

 

Anyway, just thought I'd introduce myself since I plan on sticking around.

 

Deekle

33M - Illinois

Hey!

I went through the same exact process going through the list of differential diagnoses throughout the years and finally learning about celiacs in school, except I started pharmacy school in 2012. I assume you have also become the case study in the majority of your class discussion as I have as well! It had been about a year since my blood levels came back and several months since my endoscopy to confirm the diagnosis. I still feel as though I am stuck in the 'trial and error' phase of determining exactly how sensitive I am as far as cross contamination from cutting boards, spices, plates, etc. Has that been the same for you as well?

 


  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: