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Should I Have My Daughter Scoped?


ddennis11

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ddennis11 Newbie

Sorry for the long path to my question...

My 12 year daughter, 7th grade, has had many issues with gluten in the past it started with stomach pain and digestive upset in Kindergarten and 1st grades. Allergist said to treat her like a Celiac and move on but hubby insisted we go to GI and he basically laughed me out the door and said no way and go home (low Immunoglobulin A 58 and high Gliadin Antibodies did not equate to Celiac). Well, went to alternative doc at the time and went off gluten for 2 1/2 years. No more tummy issues. Started Gluten again and seemed to be fine for several years (but mild anxieties and tired all the time). This summer big time sleep issues which lead me back to alternative doc (ped doc no help). That blood work came back low B12 and high Absolute Eosinophils 952. The Eosinophils sent me back to the original allergist. She did blood work which show negative Celiac but low Immunoglobulin A 29 and high Gliadin Antibodies 45. Second set of blood work showed Immunoglobulin A of 30 and Absolute Eosinohpils of 2784. Just got the blood work back for the Genetic testing today and she has one of the genes for Celiac. After taking to GI doc (different one same practice 5 years later) on Friday he will do the scope based on her testing/vague symptoms (did not have genetic results when he saw her). Would leave it up to my husband and me. The ped doc said not to do the scope and just the diet and see if she felt better (12 year old says she feels fine and is not sick). If she feels better then we know if not no invasive procedure. GI doc was very wishy/washy and could go either way. Don't know if genetic results would push him in a different direction.

So my question is to scope or not to scope...

What is Eosinophils and how does that relate ...

How to get her Immunoglobulin A levels up ...

And lastly, my hubby and his siblings have between them IBS (x2), Fibromyalgia, Acid Reflux, Psoriatic Arthritis

  • 2 weeks later...

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celiac-mommy Collaborator

Sorry for the long path to my question...

My 12 year daughter, 7th grade, has had many issues with gluten in the past it started with stomach pain and digestive upset in Kindergarten and 1st grades. Allergist said to treat her like a Celiac and move on but hubby insisted we go to GI and he basically laughed me out the door and said no way and go home (low Immunoglobulin A 58 and high Gliadin Antibodies did not equate to Celiac). Well, went to alternative doc at the time and went off gluten for 2 1/2 years. No more tummy issues. Started Gluten again and seemed to be fine for several years (but mild anxieties and tired all the time). This summer big time sleep issues which lead me back to alternative doc (ped doc no help). That blood work came back low B12 and high Absolute Eosinophils 952. The Eosinophils sent me back to the original allergist. She did blood work which show negative Celiac but low Immunoglobulin A 29 and high Gliadin Antibodies 45. Second set of blood work showed Immunoglobulin A of 30 and Absolute Eosinohpils of 2784. Just got the blood work back for the Genetic testing today and she has one of the genes for Celiac. After taking to GI doc (different one same practice 5 years later) on Friday he will do the scope based on her testing/vague symptoms (did not have genetic results when he saw her). Would leave it up to my husband and me. The ped doc said not to do the scope and just the diet and see if she felt better (12 year old says she feels fine and is not sick). If she feels better then we know if not no invasive procedure. GI doc was very wishy/washy and could go either way. Don't know if genetic results would push him in a different direction.

So my question is to scope or not to scope...

What is Eosinophils and how does that relate ...

How to get her Immunoglobulin A levels up ...

And lastly, my hubby and his siblings have between them IBS (x2), Fibromyalgia, Acid Reflux, Psoriatic Arthritis

This is late, I know, but we had both of our kids scoped and it was an easy, painless procedure-except for the IV ;) What did you decide to do?

ddennis11 Newbie

This is late, I know, but we had both of our kids scoped and it was an easy, painless procedure-except for the IV ;) What did you decide to do?

The GI left it up to us to decided if we want to do it or not. Said it looked like sooner or later she would be having one just a case of should we wait until she is more symptomatic. Still debating. Hubby says no and I am thinking yes. Either way she should be gluten free according to the allergist. My only thing is that if it is active celiac then she should be totally gluten-free. Where as my husband will go under the assumption that a little won't hurt. We did the genetic results back and she does have one whole gene DQ2.5 and then half of it again. Life is never black and white is it??

celiac-mommy Collaborator

My son's biopsy was suspicious, but technically negative. He had such a positive dietary response that we all agreed to treat it as active Celiac. Our dd had been diagnosed 2 years prior, so it was no big deal for us. He's done amazing since!!

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      Did your symptoms improve after going on a gluten-free diet?
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      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
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