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Should My Daughter Find A New Doc

voyager

By voyager
in Doctors

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voyager Rookie
voyager
Posted

Hi guy, I was diognosed 3 years ago and doing great. I alway thought my 20 yr old daughter had it but could not convince her to be tested, (not enough suffering I guess). We she finally went to her family doc who sent her to a gastroentrnoligist. She had her endoscopy today and the doc immediatly said it looked good villa looked normal, showed her pictures. I thought they had to be sent to the lab? Am I right or not? Then said, she still might have it.

She knows gluten-free makes her feel better and the doc said stick with it if it helps and gave her a list Gluten Free foods to eat. On this list was kellogs corn pops, cocoa pebbles and fruity pebbles, quaker puffed rice.

I do not need to tell you guys that that list is a bunch of bull for celiacs. DOES IT SOUND LIKE THIS DOC KNOWS NOTHING OF THIS ILLNESS , or am I missing something?

Help! Please! I want to steer my daughter straight!

Craig in Deltona FL

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Guest nini
Guest nini
Posted

I replied on your other thread that I do believe that at least several years ago those cereals were all gluten-free, over the past few years, mfrs have changed formulas and now the only safe ones on there are the fruity pebbles and cocoa pebbles...

I wouldn't necessarily give up on the Dr. because of this. If he advised her to stick to the diet if it helps, that is pretty smart. Was she already gluten-free when she had the biopsy though? If she was that could very well skew the results and she may have already begun to heal... There is also the chance that he could have missed areas of damage too...

Since she's already had the biopsy, there is no reason to continue eating gluten if it makes her feel sick. If eating gluten-free makes her feel better than it's obvious she needs to be gluten-free. Once she's gluten-free and doing better there is no reason to need the gi dr! She can do any follow ups with her primary care dr. at least that's what I do.

Lisa Mentor
Lisa
Posted
Hi guy, I was diognosed 3 years ago and doing great. I alway thought my 20 yr old daughter had it but could not convince her to be tested, (not enough suffering I guess). We she finally went to her family doc who sent her to a gastroentrnoligist. She had her endoscopy today and the doc immediatly said it looked good villa looked normal, showed her pictures. I thought they had to be sent to the lab? Am I right or not? Then said, she still might have it.

She knows gluten-free makes her feel better and the doc said stick with it if it helps and gave her a list Gluten Free foods to eat. On this list was kellogs corn pops, cocoa pebbles and fruity pebbles, quaker puffed rice.

I do not need to tell you guys that that list is a bunch of bull for celiacs. DOES IT SOUND LIKE THIS DOC KNOWS NOTHING OF THIS ILLNESS , or am I missing something?

Help! Please! I want to steer my daughter straight!

Craig in Deltona FL

Craig:

You did not mention that several samples for a biopsy's were taken, or a biopsy at all. I would re-question your doctor. I see no reason to do an endoscopy and not do a biopsy at the same time for confirmation.

I would request you daughters records, with her consent (over 18) and take it to another doctor.

It is sad for me that those of us that post here and read here, obviously know, through our own reseach, more about Celiac then our own PM dr's. We are the Voyagers.

voyager Rookie
voyager
Posted
  • Author

Yes, she went on a gluten spree for one week before she had the proceedure. and yes they did take a biopsy.

Guest nini
Guest nini
Posted
Yes, she went on a gluten spree for one week before she had the proceedure. and yes they did take a biopsy.

was she already gluten-free before her week long gluten spree? I ask because 1 week on gluten after being gluten-free is not nearly enough as the reccommendations are at least 3 months of fairly heavy gluten consumption. And how many biopsy samples were taken? Only one? The experts recommend at least 8-10 samples...

so back to the original question, maybe the Dr. isn't as up on the standard recommendations for gold standard dx, but it's not bad that he suggested staying gluten-free if it makes her symptoms go away. There are apparently a lot of varying opinions among the "experts" and some say that you can only have Celiac with positive biopsy, but there are others in the medical field that are saying that positive dietary response is proof enough.

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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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