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Potential Celiac Diagnosis?

jen4az

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squirmingitch Veteran
squirmingitch
Posted
6 hours ago, jen4az said:

Thank you for the resources.  I am SO frustrated.  We are in the military and my husband's doctor sent over a referral request to the base GI.  The Dr. declined the referral to see the GI.  He said that a weak positive TTG-IGG does not warrant a GI referral or Endoscopy.  My husband told his doctor that he has diarrhea at least once a day, a family history of celiac and he tested positive for TTG (IGG.)  My husband wants to try and convince the GI to give him a referral.  Does anyone have any GI guidelines or resources that prove this GI doctor wrong?  I've heard on this forum that people can have negative bloodwork and still have celiac disease.  Any journals or research we can bring up when he talks to his doctor?   Thanks again!  I would probably be going completely crazy without you all.  This diagnosis process is extremely frustrating!

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Was your hubs tested for total IgA to see if he's IgA deficient?

Read this thread:

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jen4az Rookie
jen4az
Posted
  • Author

He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.  

Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 

squirmingitch Veteran
squirmingitch
Posted

You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.

  • 2 months later...
jen4az Rookie
jen4az
Posted
  • Author

Hello all,  

I can't believe I have been posting about our diagnosis process since July.  It's surreal how long it is taking.  A little update and some questions.  Here are the results of the endoscopies.  

3 year old endoscopy:  pathology report confirmed celiac and gastritis- they did not provide a marsh grade… is that something I NEED to have?  I don't know the purpose of the grading system.

5 year old endoscopy: I already posted that the doc saw erosions/red duodenum and that the pathology report came back negative.  We are going right before Christmas to another city to get a 2nd opinion on her diagnosis.  She is already gluten-free.  I've noticed that her eczema has gotten much worse since going gluten-free.  Is that a coincidence?  Not sure if it has anything to do with going gluten-free or if it is the prednizone they are having us use.  Let me know if you have had a similar experience.

9 year old twin endoscopy:  Negative, doctor saw mild gastritis - she was the one that only was positive with her IGA.  Thinking about making her gluten-free, not sure if there are any signs it is celiac though.

Other 9 year old twin endoscopy:  Negative- This was the one that tested positive on EMA and TTG (IGG) as well as some of the other ones.  I was surprised the biopsy was negative.  She has a lot of symptoms and I feel like the damage must be in the works, but not bad enough for a positive biopsy yet.  I'm treating her as someone with celiac...

My husband's GI finally agreed to do the biopsy.  He was only positive on TTG (IGG.)  Biopsy was negative, but the doc saw some inflammation.  

We are going to redo everyone's bloodwork in 6 months.  If the antibodies go down, that's enough evidence for me to call it celiac.  Thanks everyone!

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