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Just Saw The Gi For My Daughter Argh!

Debbie B in MD

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Debbie B in MD Explorer
Debbie B in MD
Posted

I am a bit frustrated. I know I am not a doctor, but in the last few weeks I have read ALOT.... He told me false positives on blood tests are common and false negatives on endoscopy biopsies are rare. These are both a contradiction to what I have learned. He also intimated that celiac is the lastest panacea. He wants to do a scope. I do not. We scheduled it for April 27th and she is to eat gluten. My thougths are to eat gluten and see if her symptoms come back. Then that way it doesn't matter if it is celiac or not, she shouldn't eat gluten. The only thing is that thus far her symptoms have been mild. So if nothing happens, then what. He did say that her blood work certainly makes it likely and her bathroom issues have improved. I just don't want her sedated. I haven't talked to Rob about this yet so we will see what he has to say. ARGH!!!!!!

Her ttg was >100 reference range >11

gliadin >100, refernece range >5

She has Hashimotos and juvenile rheumatoid arthritis

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Roda Rising Star
Roda
Posted

Dang with blood work that positive what is he thinking is wrong with her? He clearly doesn't know what he is takling about.

Debbie B in MD Explorer
Debbie B in MD
Posted
  • Author

Guess what she had a gluten-filled sub for lunch and cookies and now she has an unpset stomach, headache and is sooooo tired. Hmmm what do you think that means?? Me thinks she doesn't need a scope. Opinions please.

Cara in Boston Enthusiast
Cara in Boston
Posted

I think that you know your daughter best and are probably right and you know how to make her well.

My son is 6 and I knew he was going to go gluten-free anyway, no matter what the outcome, but I decided to do the scope so we could try to get a solid diagnosis. We don't need one now (his school is wonderful and will gladly honor any request from a parent) but we may need a doctor's note in the future and I didn't want him to have to do a gluten challenge after being off gluten for an extended time.

Your scope date is not too far away. A couple of weeks and then you would be done. If the test comes back positive, you will know for sure and never wonder about it. Never have to test again. Imagine that.

I was very worried about the scope and even made my husband take him since I knew I would be a nervous wreck. Everything went beautifully (Children's Hospital) and he actually had a great time. After hearing how much "fun" it was, his older brother was jealous.

Cara

ravenwoodglass Mentor
ravenwoodglass
Posted

Your doctor is flat out wrong about the blood work. You may want to ask for a second opinion. You also mention she has improved on the diet. She would need to do a much longer challenge than just a couple of weeks for the best chance at a positive diagnosis with the scope. Even then if the doctor does not do enough biopsies or the damage is patchy she could still end up with a false negative. With blood work that high there is no doubt that she needs to be gluten free and in addition there is one gene associated with celiac, the one I have a double copy of, that is considered an RA associated gene here in the US. You may find she gets some relief from the RA symptoms once she has been strictly on the diet for a few months. Not a for sure, of course, but mine has been in complete remission since about 6 months into the diet.

mommida Enthusiast
mommida
Posted

How old is your daughter? If your child is still in diapers, that can complicate the gluten challenge further.

An endoscopy could rule out other disorders that may be co-existing with Celiac.

Jestgar Rising Star
Jestgar
Posted

You are the mom. If your kid feels better when she eats a certain way, why do you care what the doc says about it? He's not the one inflicting pain on his child.

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Jestgar Rising Star
Jestgar
Posted

An endoscopy could rule out other disorders that may be co-existing with Celiac.

These would show up even if she were gluten-free.

Debbie B in MD Explorer
Debbie B in MD
Posted
  • Author

She is 15.

Jestgar Rising Star
Jestgar
Posted

All the doctor knows are the tests he has in front of him. Your daughter is a complex human being and may, or may not, have an accurate response to those tests.

Since you (she) can choose what she wants to eat, she can choose to eat in a way that is healthy, and makes her feel good. You don't need anything from a physician to make these healthy choices.

Debbie B in MD Explorer
Debbie B in MD
Posted
  • Author

Oh, I forgot to tell you.... On the way home we stopped at Subway for lunch. Gluten-fest. An hour later her stomach was upset, she had a headache and she needed a nap. It could have been exhaustion from being upset, but I am really sure it was the gluten. She hasn't had any since, feels well, and we have a second opinion to schedule. But my mind is pretty made up. We will at the least postpone the scope, go several more weeks gluten free and then challenge. We will probably wait until after her recital in June. She is a ballet dancer. Of course, then she will have been gluten-free for 2 months and the scope might not show anything then. ???? Gluten-free, gluten challenge seem like a much better option to me. Another thing, a local girl, 16, died last week while having her wisdom teeth out. Anesthesia allergy. I am a worrier. I guess all of my own celiac induced anxiety hasn't gone away. Thanks for your input. I really appreciate it.

mushroom Proficient
mushroom
Posted

This is what I know (not much, but for what it's worth) :P False positives (blood or biopsy) are rare; false negatives (either one) are pretty common. Gluten intolerance is gluten intolerance, whether you call it celiac or something else. But whatever you do, do not call it IBS!!! Going gluten free and then challenging is fine, but don't expect any endoscopy results after that to mean anything unless you are willing to have her eat gluten for two to three months before the endoscopy. It will tell you if she is gluten intolerant or not. All gluten intolerants should avoid gluten.

Period.

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