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Kujda

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Kujda Rookie
Kujda
Posted

We are in the final stages of adoption with our son Abraham. Of course because he was in states custody all his health issues have to be worked out and there are definitely some! Received call today that our GI appointment is Aug 3rd. They will neither confirm nor deny that he has celiac or gluten allergy until more tests. He also suffers from seizures and we are going for an EEG in july. SOmetimes I feel as if our lives revolve around doctors appointments. Now they want ot test him for cystic fibrosis and I can't say no because we are mandated by the state that we follow all recomendations or it could put the finalization of our adoption in jeopardy. I know in my heart it is a gluten allergy but of course they need to poke and prod my son for an official diagnosis. He has been gluten free for 3 months and virtually all symptoms stopped except for when he accidentally gets glutened---i am still learning.

Has anyone had any experience with this and can they give a diagnosis based on diet change and results from that? They are talking about putting him back on gluten and doing another set of blood testsand abiopsy. This is going to break my heart. I feel like people don't believe me or think I am making it up. Besides everyone here I have never met anyone who understands what my family is going through.

Thanks for all the info and support! This has been and continues to be a WILD RIDE!!!!

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Guhlia Rising Star
Guhlia
Posted

Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

rinne Apprentice
rinne
Posted

Sorry I can't be of any help, I just wanted to wish you and your family well. :)

Kujda Rookie
Kujda
Posted
  • Author
Celiac Disease can cause seizures. It can also cause CF type symptoms: persistent diarrhea, bulky, foul smelling and greasy stools, pale stools, poor growth, abdominal swelling, gassiness, vomiting, dehydration, frequent respiratory infections, abdominal pain and discomfort, poor appetite, and malnutrition. I'm sure there are other symptoms that I'm missing. It's actually probably a good thing they're taking CF into account. Better that it be ruled out now, rather than a big surprise later. I hope that doesn't sound like I'm not being supportive. I just think I'd rather know up front about those things. Plus, the sweat test is a relatively easy test. No where near as invasive as the biopsy for Celiac. :) We all know how fun that is.

Have his seizures stopped since going on the gluten free diet? If so, perhaps you can point that out to the doctors. You may also want to take in some literature on Celiac and seizures. Some doctors just never get it. Are you allowed to choose what doctor you take him to? If so, I would research doctors in your area and surrounding areas to try to find one that specializes in Celiac.

I hope things go quickly for you and Abraham. Good luck!

Thanks! We do not get to pick our doctor. Our peds has to refer us. We are going to see a GI at Vanderbilt- Dr Martinez. Of course if you know of anyone that specializes in this disease I would love a name and see if we could get a referral to them. Thanks so much and I would be lost without everyone here!

Kristin

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

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    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

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    • Ello
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      I have always eaten gluten and never stopped until my recent episode. I started more wheat products as my Dr. requested for the Tissue Transglutaminase Iga Antibody. mye result Value <1.0 Value interpretation: <15.0 Antibody not detected > or =15.0 Antibody detected I do not understand any of it. After eating all that wheat product my body exploded with all sorts of symptoms. I stop gluten ASAP. I am still in the healing process. I started having issues after my surgery. 
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      By trents · Posted

      Welcome to the celic.com community @Ello! You say you had a blood test for celiac disease after eating gluten for 2 weeks. Were you gluten free before that? Had you ever been officially diagnosed with celiac disease previously? You say the result of the blood test was 1.5. Can you provide the name of the test and the reference range for negative vs. positive for the test? I ask because different labs used different reference ranges so scores without a reference range aren't very helpful.
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