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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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      By Mmoc · Posted

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    • Aretaeus Cappadocia
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    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

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    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
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