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Waiting On Daughters Biopsy Results, And Have A Question.


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23 replies to this topic

#16 GottaSki

 
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Posted 25 April 2014 - 01:23 AM

Hi all!

 

So her pediatric GI called with the biopsy results.  They confirm Celiac disease. The pathology report said it was graded Marsh 3b.  Poor girl.  Well now we know why she has been feeling so awful and have an answer. She also had gastric inflammation, but no presence of H. pylori or other microbes.  So he is prescribing some meds for that.  Anyone else have this in addition to Celiac at diagnosis?

 

Another question…has anyone else had or has their child had anxiety associated with celiacs that improved after going gluten free?  She has a lot of anxiety and is severe enough to require visits with a psychologist.  This started about a year ago, about the same time all her other symptoms started.  

 

Thanks again!

 

Anxiety is a fairly common symptom of Celiac Disease.  My now 20 year old son with celiac disease had mild anxiety as a child that worsened in his teens.  He removed gluten at 15 - it took a few years for his anxiety to subside, but it did improve.  Today he has no more than occasional situational anxiety.

 

As your daughter's time gluten-free increases she will likely have many symptoms improve....my first improvement was my nails and hair.  I had weak nails that would tear easily and although I had thick hair I was losing quite a bit each day.  This wouldn't effect her, but I also stopped going gray :)

 

Each of my children had many different symptoms that all improved or completely disappeared within the first months gluten-free.

 

I think others may have mentioned this...you, Dad and any siblings need to be tested for Celiac Disease.


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-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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#17 StephanieL

 
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Posted 25 April 2014 - 05:34 AM

Hugs. Glad you have some answers though. Get everyone tested for sure before making big changes in the house. Different families deal with it differently so decide what works best for yours.


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#18 mommida

 
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Posted 25 April 2014 - 08:06 AM

A vitamin B12 deficiency symptom is anxiety.  It is very likely to be B12 deficient with Marsh 3 results.  There is no toxic level of B12 for humans and sublingual supplements are available.

 

Glad you have the diagnoses and can start healing on the gluten free diet.

 

I suggest a safe snack bag be carried around for a while.  (even if it's not the healthiest of choices in the bag like chips and candy bar along with fresh veggies and snack bars)  It really sucks to be out and about and hungry seeing others around you eating and you have nothing to eat possibly because you didn't know it was safe.


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#19 sewerplant

 
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Posted 25 April 2014 - 08:43 AM

Well this is certainly good news, if finding out you have celiac can be considered "good news".  My daughter at the age of 14 was also diagnosed via blood work and endoscopy to have celiac disease and she too suffered miserably, had terrible, terrible anxiety attacks and insomnia.  She too was sent to and was seeing a psychologist prior to her diagnosis.  Let me tell you, the anxiety/panic attacks do go away.  It all takes time though . .. I was so impatient and expected her to feel better immediately, at least within a few weeks (as others had told me they did).  However it took much more than a few weeks, but the time did go by and she has healed. And aside from a heat intolerance that never did go away, she is 16 now and doing very well; as I hope your daughter will soon be feeling!


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#20 mom2J

 
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Posted 25 April 2014 - 09:21 AM

Well this is certainly good news, if finding out you have celiac can be considered "good news".  My daughter at the age of 14 was also diagnosed via blood work and endoscopy to have celiac disease and she too suffered miserably, had terrible, terrible anxiety attacks and insomnia.  She too was sent to and was seeing a psychologist prior to her diagnosis.  Let me tell you, the anxiety/panic attacks do go away.  It all takes time though . .. I was so impatient and expected her to feel better immediately, at least within a few weeks (as others had told me they did).  However it took much more than a few weeks, but the time did go by and she has healed. And aside from a heat intolerance that never did go away, she is 16 now and doing very well; as I hope your daughter will soon be feeling!

This is good to hear, and thank you for warning me about the possibility of it not being immediate.   It is so interesting that you mention the heat intolerance.  My daughter has that as well.  She has been intolerant to heat for as long as I can remember actually.  I wonder if that is somehow related. 


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#21 1desperateladysaved

 
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Posted 25 April 2014 - 05:43 PM

Glad to hear you got a definitive diagnosis.  Now the healing can begin.  I wish your daughter a healthy life in all aspects.

 

Dee


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#22 124chicksinger

 
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Posted 27 April 2014 - 07:29 AM

Awww, I'm so glad you finally have an answer for your daughter and her healing can begin in earnest.  Hugs.


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#23 Cara in Boston

 
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Posted 27 April 2014 - 11:19 AM

Glad you have some answers and can now focus on getting her healthy.  Anxiety was one of my major symptoms.  I thought it was just caused by me having such weird/scary symptoms and the doctors never found anything wrong . . . I began to think I was going crazy.  It definitely went away after being gluten free, however it was more gradual than immediate.  Other symptoms I had went away within days.

 

Be aware that a person can experience gluten withdrawal . . . and feel worse in the first couple of weeks being gluten free.  It passes quickly and then it is all about feeling a little better each and every day.  

 

Best of luck to you.


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#24 mom2J

 
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Posted 30 April 2014 - 01:09 PM

So today we met with a nutritionist that works in the Pediatric GI clinic where my daughter is being treated.  That was a very informative and a helpful resource.  We both came home with a thick Celiac disease and gluten free diet booklet.  They also sent her home with a huge bag of Pediasure samples due to her being extremely low weight for her height.  Also, I was able to obtain a copy of the pathology report, and I had thought the Dr. had said she was a Marsh 3b, but I must of misunderstood because the pathology report says 3C.  Does that mean complete villous atrophy? I also thought it was interesting that they measured her digestive enzymes in her tissue samples.  I didn't know they did that.  She was severely deficient in all but one of those. 


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