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Sad And Frustrated

cwnhokie

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cwnhokie Rookie
cwnhokie
Posted

My 12 year old son has been sick for about a year and getting progressively worse.  He had mono in February of last year and has been sick ever since.  He went from having a few bad days every couple weeks to having one or two good days a week.  He is currently on home bound for school.  He complains of nausea, diarrhea, constipation, headache, muscle aches, joint pain, fatigue and brain fog.  He had a kidney stone in January.  He has also gained about 40 pounds in the last year.  We have seen an immunologist, urologist, gi, and an integrative medicine doc.  He has had lots of blood work although the GI said his celiac testing was incomplete.  I haven't been able to get copies of that blood work from his pediatrician.  He had a stool sample that showed inflammation and blood and then an endoscopy and colonoscopy that was normal.  The biopsies were normal too.  The integrative medicine doc said that he is highly sensitive to cows milk and gluten and to start a dairy free gluten free diet.  He's been doing that for 4 weeks and have done really well being very careful about what he is eating.  We saw some improvement in the first week, then it's kind of stalled.  He played basketball for a few hours a few days last week which is a huge improvement but once he's done he can hardly move and whole body aches, especially his joints.  He's barely gotten off the couch the last few days so we are both discouraged.  I've been researching and I've been reading that the test for gluten and casein sensitivity is not accurate so I wonder if we are doing all this for nothing.  I'm wondering if it could still be celiac, we haven't gotten all the results back from the integrative medicine doc, we go back next Monday.  She also did what I think is a genetic test for celiac.  We were encouraged initially but had hoped to see more improvement by now.  Any thoughts?

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

I think you need to get those copies of the celiac blood test panel and the biopsy/endo report. If my doc had just ordered the shorter version of the celiac blood panel (cheaper....), my diagnosis might have been missed. As far as the biopsy goes, the small intestine is vast (size of a tennis court) and it is easy to miss early damage. It is best to get at least six biopsies.

I would not rule out celiac disease until you have those results in hand! Also obtain any other lab tests as well.

Do not give up. Something is wrong with your child.

Best wishes!

cwnhokie Rookie
cwnhokie
Posted
  • Author

The GI said that there could still be something in the small intestines that he couldn't get to with the scope.

cyclinglady Grand Master
cyclinglady
Posted

Okay, but is still a good idea to get copies of lab tests and doctor notes. The GI might have missed something in communicating with you. Doctors can make mistakes too!

I really feel sorry for you and your son. I have a 14 year old and I would hate to see her suffer. Hang in there, Mom!

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    • StuartJ
      Gluten Sensitivity

      By StuartJ · Posted

      Well, three months later and a startling revelation!  After going gluten free (and nearly bankrupt buying special foods), my wife made a lunch of meat potatoes and gravy made with Bertolli white sauce - no wheat there right?  Big flare up withing hours and I was really wiped out with it.  She rechecks the label on the sauce bottle and right at the bottom of the ingredients XANTHAN GUM. There's our #1 suspect again!  So by way of experimenting, she decided to try making a loaf of bread with just regular white flour like she used to do and see what happened; the familiar smell hit me when I walked in the door last night and I sat down to eat this still warm, fresh goodness - I thought even if I have to take Imodium sandwiches, it will be worth it 😋 No ill effects, either overnight or today!  Half the loaf is now gone because I had some for supper, saving just one last slice for breakfast in the morning` - I've used the bathroom once and that was normal, so maybe it is not the gluten after all? Can't wait to try a beer! 😁
    • trents
      Could this be a new intolerance

      By trents · Posted

      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Could this be a new intolerance

      By Celiacpartner · Posted

      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
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      By trents · Posted

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