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mom2J

Member Since 23 Apr 2014
Offline Last Active Aug 29 2014 12:11 PM
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Posts I've Made

In Topic: Waiting On Daughters Biopsy Results, And Have A Question.

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. 


In Topic: Waiting On Daughters Biopsy Results, And Have A Question.

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. 


In Topic: Waiting On Daughters Biopsy Results, And Have A Question.

24 April 2014 - 07:41 PM

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!


In Topic: Waiting On Daughters Biopsy Results, And Have A Question.

23 April 2014 - 12:55 PM

Thanks again to all of you who have replied.  All very good information to be aware of. 

 

As far as why the Dr. gave permission to go gluten free, was because previously they asked us to keep her on her normal, gluten containing diet so as to not affect the test/biopsy results.  It was the day of the biopsy he said we could do gluten free now. And yes, he also did inform us that we all need screening for celiacs if she is positive for it. 


In Topic: Waiting On Daughters Biopsy Results, And Have A Question.

23 April 2014 - 09:35 AM

Thank you for the replies.  I appreciate it.  No she has not had any blood work to check for nutrient levels.  She has had a couple of complete blood count tests the last few weeks to follow an abnormally low WBC count as well as a high lymphocyte count.  In doing these tests, we do know that she does not have anemia. Her lymphocyte count came back down to normal on the second test, but WBC is still low.  I am not sure why they only did the one celiac blood test.  It was her endocrinologist who follows her thyroid that ordered the test, not the GI dr.  I guess the GI Dr didn't feel it was necessary to do more blood work ….?  He just recommended getting the biopsy at that point.  If it comes back pos. for celiac, should I still ask for nutrient blood tests?  We were given permission to remove gluten from her diet after the biopsy was done, and the GI Dr said he recommends she meet with their nutritionist if the biopsy comes back positive for celiac.