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ArPlasma

Celiac It Is

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After the longest wait, we have the results of the biopsy for DS1 and it is positive and confirmed the Celiac diagnosis. We got a note from the doctor for the school which hopefully is going to help us keep him a bit safer from gluten at school.

It's been almost 4 weeks since the biopsy and he has been already feeling much better( started the gluten-free diet right after biopsy). No more tummy aches or headaches and his teacher sent me a note yesterday about his increased focus and responsiveness in class. I am hoping this lasts and we can keep him from being glutened as much as possible.

Is it Okay to be happy for finally getting a diagnosis? This just feel like a relief somehow. It is a very strange feeling.

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Absolutely...we were extremely happy to finally have a diagnosis.  It is a very good feeling to realize we can improve our health by changing the foods we eat rather than more invasive medical treatments or medications!

 

Congratulations on the completion of a tough process...glad to hear your little one is improving...keep up the great work :)


-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)

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Great job, Mom! Look, he's already healing and starting his journey. :)

Keep it up and stay on top of the school!


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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It is AMAZING to have a diagnosis. I considered it a huge blessing to finally have found out what was wrong and that there was something I could do about it. And so many people struggle with getting a diagnosis in the first place. So yes, be happy! Congratulations! You are now ready to help change his life for the better :)


Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012

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:)

 

I just went through the 504 process and it was SO MUCH EASIER than I expected.  Man, I was expecting a fight and going all "mama bear" on them and it was really an easy and engaging process.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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:) I hope he continues to feel better.  Good catch on that, Mom!


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Thanks everyone! The school has been great so far, they had already passed a note to the teachers before diagnostic but now the nurse made it known to everyone that it is official. We are still writing the 504. We took a break this week- end, I finally gottorelax a bit and of course I got sick. I always catch something( cold), after being stressed out for too long. :)

DS's school teachers as well as karate instructor have been commenting on his increased responsiveness.

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Glad you have answers.  Be sure to get everyone else in the family tested.

We did. DD tested negative on all. DS2 tested negative on all as well( very close to positive on TTG- IgA and has a skin rash similar to what DS1 at the same age), DH tested positive on ttgs and just had his endo, waiting for results. His GI told him that given blood tests and family history, even if the biopsy is negative for him it most likely means that they have not found damage yet. So everyone is going gluten-free in the house! DD can eat gluten at school and outside, DS2 not at school yet so he will be gluten-free for now.

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After the longest wait, we have the results of the biopsy for DS1 and it is positive and confirmed the Celiac diagnosis. We got a note from the doctor for the school which hopefully is going to help us keep him a bit safer from gluten at school.

It's been almost 4 weeks since the biopsy and he has been already feeling much better( started the gluten-free diet right after biopsy). No more tummy aches or headaches and his teacher sent me a note yesterday about his increased focus and responsiveness in class. I am hoping this lasts and we can keep him from being glutened as much as possible.

Is it Okay to be happy for finally getting a diagnosis? This just feel like a relief somehow. It is a very strange feeling.

Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want :)

 

If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?


Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. Negative DGP IgA and IgG. Elevated ESR (value 38. Normal <10).

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).

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Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want :)

 

If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?

Nope don't mind, everything was positive:

tTG- IgG:46, tTG-IgA >100, EMA 1:160

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