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Inconclusive Biopsy?

sisterdayna

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sisterdayna Newbie
sisterdayna
Posted

I am new to this site. Came here hoping to get some answers. I have an 11 yo ds who is diabetic/asthmatic/autistic. He was having a lot of emotional and gastro problems so I did a trial off gluten. When I did, his blood sugars dropped drastically. We had to cut his insulin in half! We did this diet for at least a year, but he was in and out of the hospital with various asthma/diabetes related issues. He was on and off of antibiotics and at some point developed C-diff. During that time, not knowing his ailment, we assumed glutens must not be the problem and took him off the diet. This was probably 4-6 months ago. He continued to have debilitating stomach and gastro problems. 2 Weeks ago he finally had a scope done. The results today were this: inflamation, and slight atrophy and blunting of the villus. Now they want blood tests. We've done blood tests in the past, and they are always negative. I thought the abnormal villus (no matter how slight) was THE evidence of celiacs. Now, after all this time, they want blood tests to verify the biopsies? I'm confused. Can someone help me grasp this? :(

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Rachel--24 Collaborator
Rachel--24
Posted

Have they checked if he is IgA deficicient because that would cause him to have negative blood tests even if he were Celiac? Yes, the fact that he has blunted villi means he should not be consuming gluten. For some reason doctors always seem reluctant to diagnose Celiac. Ultimately, you dont need a doctors permission when it comes to putting your son on the diet. In my opinion all the evidence points to him having Celiac. Did any of his symptoms clear up while he was gluten-free?

ravenwoodglass Mentor
ravenwoodglass
Posted
I am new to this site. Came here hoping to get some answers. I have an 11 yo ds who is diabetic/asthmatic/autistic. He was having a lot of emotional and gastro problems so I did a trial off gluten. When I did, his blood sugars dropped drastically. We had to cut his insulin in half! We did this diet for at least a year, but he was in and out of the hospital with various asthma/diabetes related issues. He was on and off of antibiotics and at some point developed C-diff. During that time, not knowing his ailment, we assumed glutens must not be the problem and took him off the diet. This was probably 4-6 months ago. He continued to have debilitating stomach and gastro problems. 2 Weeks ago he finally had a scope done. The results today were this: inflamation, and slight atrophy and blunting of the villus. Now they want blood tests. We've done blood tests in the past, and they are always negative. I thought the abnormal villus (no matter how slight) was THE evidence of celiacs. Now, after all this time, they want blood tests to verify the biopsies? I'm confused. Can someone help me grasp this? :(

To my knowledge those were positive biopsy results have you asked the doctor why he wants more bloodwork? I would take all test results in to another doctor for a second opinion if this one says he should just keep eating gluten.

sisterdayna Newbie
sisterdayna
Posted
  • Author

You know, it's hard to say whether he had positive results with the diet. I think he did, but the C-diff muddled everything up. I know we put him back on the gluten yesterday, and today he feels awful. He woke up in pain. If nothing else, this is proving to him that he needs the diet.

We have not had the IGa testing. That might be the problem though, because all of us have negative results. on the blood test. He has one sister who has a thru-the-roof IGA. Does that mean anything?

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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 🙏🏻 
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