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Member Since 13 Mar 2009
Offline Last Active Private

#871881 Is Okay To Self Diagnose?

Posted by on 31 May 2013 - 12:12 PM

This is most certainly your decision, but (pardon my big butt)..


There are several reasons to receive a diagnosis...these are my top two:


1)  Should you question your need to be gluten-free for whatever reason in the future -- it is a lot easier (well it was for me) to never cheat once the dx was confirmed.


2) Kids -- mine were young adults and teens when I was finally diagnosed -- medical history is oh - so important -- I know I'm adopted.  Anyhoo depending how quickly the medical profession catches up -- you will need to be your children's advocate as well as your own.  That means demanding regular celiac antibody tests for them minimally every three years or more frequently should any of the over 300 symptoms associated with celiac arise.


Whatever you decide -- we'll be hanging around to help thru the transition.


Happy Friday :)

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#871572 New Problem

Posted by on 30 May 2013 - 06:23 AM

Procedural Report, no Biopsy report yet.


Grade 2 Esophagitis in the lower third of the esophagus and the gastroesophageal junction compatible with erosive esophagitis and reflux esophagitis

Erythema, Congestion, coffee ground heme and petechiae in the Stomach and fundus body compatible with  Gastritis

Erythema, congestion and atrophic appearance in the antrum and pre-pyloric region

Erythema in the distal bulb and proximal second part of the duodenum, compatible with mild duodenitis

Otherwise normal to the third part of the duodenum

Gastric PH 1 ( I do not understand that but do not understand any of this really so, there it is)


I have made several posts in the past 7 weeks, that is how long I have been sick.  I was glutened 8 weeks ago.  I have been very careful about what goes in my mouth since.  Is this new gluten or not healed yet from years of gluten?  Or something new altogether?  Waiting to hear from the doctor. 


How long have you been gluten-free?  It can take months or years for the damage of celiac disease to repair itself -- my endos got worse at years one and two and finally there was minor improvement at year 3.  Have you identified any other food issues since removing gluten?  Some of us have to remove more than gluten before healing can happen -- once healed many of these foods are edible once again - except gluten of course.


Hang in there :)

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#871550 Is Eating Gluten Worth A Possible Diagnosis?

Posted by on 30 May 2013 - 03:16 AM

Welcome aberlee!


Positive is positive -- especially when combined with a resolution of symptoms with removal of gluten.  The IgA test you mention -- was it the tTG-IgA and what were the ranges given?  Unfortunately many doctors only run that one test -- here is the complete panel:


Total Serum IgA

tTG - both IgA and IgG


DGP - IgA and IgG


I highly recommend getting into see a gasterenterologist that specializes in Celiac Disease.  Having had removed gluten for six weeks can make it difficult to test as the antibodies measured are created when gluten is consumed.  Deciding to add gluten back in for testing - called a Gluten Challenge - is something you do need to consider and soon -- if you are unable to tolerate ingesting gluten for the challenge -- let your doctor know.  


Celiac Disease can cause malabosorption so having blood tests of nutrients can be an important part of the puzzle and let you know if you need supplementation while healing:


Vits B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc -- along with a CMP (complete metabolic panel) and CBC (complete blood count)


Read as much as you can -- it really helps the transition -- start here:




Hang in there :)

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#871380 gluten-free Oats Have A 1 In 20 Chance Of Causing Celiac Attack

Posted by on 29 May 2013 - 06:47 AM

Two of us in my family can't eat gluten-free Oats right now -- hope to get them back one day soon.


Four of us can.

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#871370 Thoughts On Hoda

Posted by on 29 May 2013 - 06:08 AM

Anyone remember the old make the high school girls carry around a ten pound bag of flour or sugar for a day to get the message across that teenage pregnancy aint as cute as it looks???


I propose all journalists that wish to discuss food allergies and or any "gluten people" :ph34r: issue MUST order and eat completely gluten free / nut free in every every restaurant they visit for one full month :D


Oh...anyone know if those little handy dandy gluten test stripes are available for them to purchase to prove each meal they eat contains no cross-contamination????

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#871364 The New Celiac Drug Is Out There

Posted by on 29 May 2013 - 05:55 AM



'this to shall pass' has been the motto turned joke between me and my kids too -- it really ought to be the Celiac Disease Motto ;)

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#871362 Rapidly Greying Hair While On Gluten Challenge?

Posted by on 29 May 2013 - 05:49 AM

Oh deer! I thought once white always white so I was not concerned. My hair is just getting whiter. One Grandmother went White in her 20's. The other still had a lot of Black hair when she passed at 93. Before being diagnosed I thought the white was just genetic.


It can be genetic -- I have a friend that went white in his 20s...he remains the picture of health in every way.


just saying for me...seems it was an indication of malabsorption :)

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#871359 Rapidly Greying Hair While On Gluten Challenge?

Posted by on 29 May 2013 - 05:46 AM

take your pick...I wasn't absorbing B12 D, K, Copper, and Zinc in both instances.

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#871177 My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.

Posted by on 28 May 2013 - 12:47 PM

ps...here is a great thread to hang out and chit-chat and find some yummy things to eat:



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#871176 My Only Celiac Friend Started Eating Gluten Again, And I Feel Alone.

Posted by on 28 May 2013 - 12:45 PM

Welcome Back!!!


Very sorry to hear your friend is dismissing the positive blood tests -- my guess is she will regret returning to eating gluten -- hope it is sooner rather than before irreparable damage happens.


My advice for you is continue living your own gluten-free life -- take care of yourself -- maybe hang out here as there are many of us that were the only celiacs we knew before we were diagnosed.


Great to see you here again :)

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#871175 Biopsy Results Inconclusive; Early Celiac, Sibo, Something Else?

Posted by on 28 May 2013 - 12:41 PM

So frustrating....


First -- not having the two genes generally tested for can NOT rule out Celiac Disease -- although my guess is you are carrying them.


Second -- request a written or electronic copy of both the procedural report AND the pathology report and let us chime in if you feel comfortable to do so.


Third -- the most important factor is your improvement gluten-free :)


Hang in there!

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#871172 The New Celiac Drug Is Out There

Posted by on 28 May 2013 - 12:27 PM

Hi ABQ--


I agree with what others have said above....thought I'd add if you want a good giggle...go back and read what some of us were posting our first months gluten-free -- we all stomped our feet :angry:  threw a few pity parties -_-  and were at times pretty darn grumbly  :wacko:


nearly all posts on this site come from a place of wanting to help others get through what we all have -- hopefully with a bit less heartache  :blink: along with avoiding many of the pitfalls we tripped over  :ph34r:


Hang in there  :wub:

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#870696 Do You Think Celiac Disease Is Likely With The Family History I Have?

Posted by on 25 May 2013 - 03:52 PM

Sorry... Once again I am very frustrated about this! My blood tests came back negative and I just had an endoscopy yesterday and am just waiting for the results...


I feel like family history on my moms side could indicate celiac...


My great grandmother died of multiple myloma.

My grandma has been going to the doctor for a reoccurring rash on her bottom, but her tests were negative... She got a referral to a GI but now canceled her appointments..

My mom had lupus

And now I got diagnosed with a hiatal hernia and GERD from my endoscopy..


We all have a history of anxiety and depression.. I'm trying to be patient but the closer I get the harder it issss!


So, all I'm asking is, Do you think all of these family problems could be related to celiac disease??


It is certainly possible.


Now that your endoscopy is complete...you can remove all gluten.  Often the dietary response is the most important factor for Celiac Disease or Non Celiac Gluten Intolerance.

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#870688 Is Coeliac Disease The Only Thing At Play?

Posted by on 25 May 2013 - 02:04 PM

Are you eating simple whole foods?  Processed foods -- gluten-free or not can often be tough on the healing digestive system.


Dairy can also be tough until healing happens.


A food/symptom log can be very helpful in sorting out possible problem foods you are having during transition -- if a food (other than gluten) is bothering you...remove it for a while and then try it again after a week or more.


Hang in there :)

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#870218 The New Celiac Drug Is Out There

Posted by on 22 May 2013 - 07:57 PM

Ya....that is not my understanding of the items currently in various stages of testing...also find it strange that someone diagnosed nine years ago has yet to find good tasting gluten free food.
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