My 11 year old's test results - advice

[lily414]

So my 11 year old has been having stomach troubles for a while. His doctor diagnosed him with gastritis and put him on nexium for a couple of months. It did help a little.  We finally got into see a pediatric GI and she tested him for celiac's disease. Here are his test results. I know they are positive but now they have scheduled him for an endoscopy with biopsies. Is there any chance he does not have celiac's disease or is it a forgone conclusion based on his lab results? Just trying to prepare myself. He still feels so sick and he has to wait 1 month to get the endoscopy (2 weeks in now). Thanks!

 

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  294 Milligrams/deciliter

  Reference Range:

  59 Milligrams/deciliter - 301 Milligrams/deciliter

   
•  

  Open Original Shared Link

  108 Unit(s) (High)

  Reference Range:

  < 20 Unit(s)

   

 

[cyclinglady]

I am sorry that to your son is sick!  He has a high chance of having celiac disease.  The GI may want to runs the entire celiac blood panel in addition to the endoscopy.  PLEASE! KEEP FEEDING YOUR SON GLUTEN OR ALL THE TESTS COULD BE NEGATIVE!!!!!!!

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In the meantime continue to research celiac disease.   The good news is that this can be managed by diet!  He will be fine!  (And so will you!) 

Oh, all first-degree relatives will need to be tested even if symptom free.  

 

[SLLRunner]

Welcome, @lily414
 

I don't have an answer to your question, but I think it's important to go through with all the endoscope. I know your 11 year old doesn't feel well, but make sure he eats gluten until all testing is done. Please let us know how it goes.

[Jays911]

Echoing what the others have said.  Keep him on gluten until the testing is done.  And if he does have celiacs, that is not a big issue.  Once you make the dietary adjustments, life gets much better.  Blessings.

[ChiaChick]

Same as above. Stay with the gluten. Bring on the two weeks and the biopsy. What an awful time for you all. Please keep us informed. Brighter days ahead. xoxo

[lily414]

Thanks for the responses. We are just waiting it out and keeping him on the gluten until his scope. I am just anxious to find out what is wrong and to help him to feel better. Are there different "degrees" of celiac disease? I've heard so many different opinions on to what extent he will have to avoid gluten (cross contamination, etc). Just wondering how you know the limits. The said we will meet with a dietitian if his biopsy is positive. 

[Jays911]

Not really. For gluten intolerance, maybe, but for true Celiacs, no. It has been about a year and a half for me. It is very manageable now, although maybe once every two or three months I get glutened. The last time was at a reputable restaurant where I ate spring pea soup, and asked three times about it. As I finished it, I found fragments of bread in the soup. 

On the other hand, we found a great local bakery that sells old style bread that is gluten free. Your hardest issues will be traveling. Try the gluten free around me app.

 

[squirmingitch]

8 hours ago, lily414 said:

Thanks for the responses. We are just waiting it out and keeping him on the gluten until his scope. I am just anxious to find out what is wrong and to help him to feel better. Are there different "degrees" of celiac disease? I've heard so many different opinions on to what extent he will have to avoid gluten (cross contamination, etc). Just wondering how you know the limits. The said we will meet with a dietitian if his biopsy is positive. 

If he is celiac, & I'm sure he will be, he will have to avoid gluten at all costs!!!! There is no allowance for "a little bit" or any cross contamination. Anytime he gets gluten, even a small amount, it will damage his villi & kick off the immune response. I think the same holds true for NCGS as well. There is not a ton of research on that yet so it's better to be safe than sorry. NCGS does not damage the villi but they don't know yet if it doesn't damage something else in the body. It will likely be years before we can know the answer to that one.