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mom2J

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

How Long For Antibody Level To Come Down?

29 August 2014 - 12:01 PM

Hi,

 

My daughter was diagnosed with Celiac disease about 4 months ago.  At the time of diagnosis, her Tissue transglutenase antibody was 120.  Her small bowel biopsy came back very + for celiac disease.  Fast forward 4 months later and adherence to a strict gluten free diet, and her antibody level has only dropped to 100. So 20 "points" so to speak.  When the nurse called, I was under the impression that meant she was still in contact with gluten and that if she is adhering to a strict gluten free diet, we need to double check some more where this might be coming from.  I'm racking my brain unsure where this mystery gluten is getting into her system.  And I feel horrible that after 4 months of her completely changing everything about her diet, this only dropped 20 points. My question is, is it unusual to have only dropped this much in four months, or is it possible that it could just take some time?  I will be going over all ingredient lists again in all the food she consumes as well as soap and hair products etc... but we have been so very careful about this. And I do want to add that she has felt so much better since going gluten free.  She has gained 10 pounds already since diagnosis (in her case this was needed) which tells me something is going well.

 

Thanks in advance for any advice/help with this.

 

 


Waiting On Daughters Biopsy Results, And Have A Question.

23 April 2014 - 08:17 AM

Hi,

 

So this is my very first post on this forum.  I am anxiously awaiting the results of my daughters biopsy.  Here's a little history, and I do have one question.  She became "sick" with vague, non specific symptoms almost a year ago.  Episodes of feeling awful (fatigue, dizzy, nausea, headache and a couple of times throwing up with no clear understanding why).  We took her to Dr, and she had blood work done that revealed she has autoimmune Hashimoto's thyroiditis.  (she is 12 years old)  It took a good 8 months to find the right dose of medication for her, as she kept swinging back and forth from hypo to hyperthyroid.  After blood tests consistently revealed that her thyroid was under control, but she was still feeling miserable with almost daily episodes of similar symptoms listed above…we took her back for further testing.  She had a celiac panel done about two months ago that revealed  high levels of tTG-IgA (her # was over 120). They didn't do any of the other tests.  She had her biopsy on Monday.  Path report won't be back for a week or so.  My question is that the doctor showed us pictures of the area where he saw some abnormalities. In the duodenal bulb and duodenum.  The abnormality was numerous nodules.  He said sometimes they see this in celiac patients but won't know for sure until path report comes back.  I was wondering if any of you had similar initial findings from the endoscopy, and if this is a clue that she has celiac.  I know I only have a few days to wait, but its killing me… Other symptoms she has are: difficulty gaining weight (has been around 80 lbs for over  year now), no exercise tolerance, anxiety, severe eczema on her hands, bloating after eating…will eat just a small amount and feel full too soon, etc..  She doesn't have any classic symptoms of abdominal cramping, diarrhea etc..the only gastrointestinal symptoms are the nausea and bloating…  Her doctor has said that he has seen some cases of patients with other auto-immune disorders show high levels of the tTG-IgA with no evidence of celiac on biopsy, and due to her "non-specific" symptoms and the absence of abdominal pain/cramping and diarrhea, he won't say that this is likely Celiac until after path report comes back.  We hope she doesn't have it, but it would be nice to have a solid answer.  Anyway, I guess I am mostly just sharing our story, but would love any feedback if anyone has anything to share.  

 

Thanks in Advance,