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mrslcobb
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mrslcobb Newbie
mrslcobb
Posted

Hi All,

My now 8yo son has been going through the testing process for celiac. We were told today that there was damage to his villi in his last biopsy 2 weeks ago and to start strict gluten free and have another biopsy in 6 mos. 

He is a very picky eater and most of the things he likes are gluten-filled.

Any advice or words of wisdom for a newbie momma would be appreciated!

 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome! 

I do not have much time, but you can start with our “Newbie 101” thread located under the “Coping” section of the forum.  It contains some great tips.  

 

 

 

GFinDC Veteran
GFinDC
Posted

Hi,

Celiac disease is an auto-immune condition.  So you should be aware that even a tiny amount of gluten can cause the reaction to flare.  And because the immune system is serious about it's job, the reaction can keep going for weeks to months.  So we need to be careful about avoiding cross-contamination as happens in shared peanut butter jars, mayo, toasters, etc.

There is also  the possibility that immediate family members may develop celiac or already have it.  There are a couple of genes that trigger celiac so anyone with the genes is a candidate.  The genes don't make you get celiac, but make it more likely to get it.  The celiac genes are also associated with other AI diseases.

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    • Bronwyn W
      Newly diagnosed

      By Bronwyn W · Posted

      Thank you 😊 I will certainly have those tests done to be thorough although bright red color indicates lower down.  This information is very interesting,  Thank you so much 🙏🏻 
    • trents
      Newly diagnosed

      By trents · Posted

      As Plumbago mentioned, bleeding in the upper end of the GI track tends not to show up as bright red in color because it gets acted upon by the digestion process and more thoroughly mixed in with food residues that are passing through the intestines.
    • plumbago
      Newly diagnosed

      By plumbago · Posted

      @Bronwyn W Working with your medical provider, you could do a complete blood count test. If you were bleeding say from an ulcer in the stomach (and let's hope not), your red blood cells could be low and your hemoglobin low as well. Your stools may show up as the proverbial "dark and tarry," indicative of a bleeding site further away from the anus. Basically, you may be anemic. Your heart may be beating extra fast as a way to compensate for the decreased number of blood cells, your oxygen saturation may be lower than normal on a pulse oximeter, and so on. But talk to your doctor.
    • Bronwyn W
      Newly diagnosed

      By Bronwyn W · Posted

      Thank you for this insight. I have had rectal bleeding after glutening and subsequent constipation (+ IBS-C) and always attributed it to internal hemorrhoids (diagnosed). What I wasn't aware of is the possibility of bleeding further up the digestive tract. Please can you elaborate on the causes and symptoms to watch for?
    • Scott Adams
      Still unsure.....

      By Scott Adams · Posted

      Be sure to be eating gluten daily until all of your celiac disease tests are completed (at least 2 slices worth of wheat bread per day for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy).
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