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Benshell

Help! Do Endoscopy Or Not?

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I need help making a decision:

I have a 6 year old daughter who just tested positive for celiac (blood work), however has NO SYMPTOMS. Her growth, development, vitamen levels, everything is fine (perfect in fact). We are re-doing the blood work just in case their was a lab error.

The doctor wants to do an endoscopy to be sure, but feels based on the blood work levels that she is celiac. While she may not have symptoms now, she could develop the in 6 months or 6 years, its unknown.

Based on my questions below, the dr said its up to me to decide whether to do the endoscopy or not. But he usually does them just to be sure. He also said he never had a case where the blood was positive but the endoscopy negative, but its strange that her #'s are high and she has no symptoms.

My questions are:

1) Can we just skip the endoscopy and do the gluten-free diet? (dr said this is OK if we choose to, he would re-do her blood work in 6 months and expect to see lower #'s, which would also indicate celiac)

2) What if the endoscopy comes back negative or only subtle damage for celiac, which contradicts the blood test? THen what? The dr says that she just continues on normal diet and would have to re-endoscopy her in 1-2 years to check the damage at that point.

Any help would be greatly appreciated as my husband and I are trying to decide which to do, just skip the endo and do gluten-free or do the endo as we may not have to go gluten-free, or may have to go gluten-free anyway. ANy parents worries about their kid being sedated.

HELP>

Thank you

M

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Celiac blood tests are almost never false positive. If her numbers are high, she almost certainly has celiac. A lack of MAJOR symptoms really is not all that rare. She probably does have some minor ones that you don't even recognize. I know I did, but never did have failure to thrive, anemia or diarrhea. And then suddenly at age 46 I was deathly ill.

Endoscopy is your choice, but your doctor IS right in that if she sticks to the diet and returns for blood tests, those levels should be down if she has celiac. That would be proof enough for me. But she must stick very tightly to the diet or you learn nothing.

For your daughter's sake, please pursue this even though you see no obvious symptoms. If she has celiac (and she probably does), it will catch up with her eventually.

BTW, if your daughter has no symptoms, why did the doctor do a celiac panel? There must have been something to cause him to do that.

richard

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My daughter see's an endocrinologist since she was born without a thyroid, on synthroid since 1 week old. I know thyroid issues and celiac are very common together, so maybe the dr was looking out for it. My daughter complains of tummy aches everytime she has to poop, but feels better right after she goes (which is twice a day). So I guess just in case, the dr ran the panel (good thing I have a GREAT pediatric endocrinologist).

The way we're thinking now is as long as the results of the re-test come back positive, we're just going gluten-free - all the way. We'll skip the endoscopy and really stick with the diet, NO CHEATING (you guys on these forums have taught me well). We'll re-check in 6 months and see where her #'s are to just be sure.

The only problem we're facing is stubborn grandpa's that see no reason to have a seperate butter as there are no crumbs in their butter (they showed me). I said I don't care, its contaminated. But they are stubborn old men. I finally threatened not to have my daughter visit them unless they comply or I bring my own food. With nagging from grandmas upset not to see her, I'm sure they'll give in.

Thanks for the support.

m

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A strict gluten-free diet should tell you the things you need to know; I did want to say that my son was dx at 9 and has had something like 6 'scopes (I honestly have lost track). While it is alarming to contemplate, it is not so awful that if you ended up having to go there, you should panic. He sailed through them all.

Also, grandpa has every right to his crumb-ridden butter. You can't be successful with every battle, or every person. Threatening to not let her visit (stay over? or just visit?) is probably not a battle you can win. Better, perhaps, to bring your food. It shows you are serious without making it everyone else's job to be serious. Or maybe, you teach her how to take care of herself when she's out and about -- now there's a life skill she'll really love you for teaching her!

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My husband and I decided not to do the endoscopy on my son, as he was only 15 months and very tiny when his blood tests came up positive. Our pediatrician (luckily) concurred with us that it is too invasive and that a negative endoscopy isn't always conclusive anyway.

So, we started the diet and our "failure to thrive" baby was back on the growth charts in no time. In fact, he miraculously grew a 1/4 of an inch within a few weeks and gained a few pounds. We were gobsmacked!

The gastro still treated us like we were morons for not going through with the scope, but it was definitely the right choice for us. That being said, many people on here have children who had the scope done and were absolutely fine.

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Just wanted to say we're at the same stage and opting for the scope. My son had a very positive ttg. My son's GI doc put it this way (paraphrasing): We have no family history of celiac so it'll be good to confirm the diagnosis as well as to see if anything else is going on or to rule out anything that could keep him from being 100% even if it turns out he has celiacs. If his biopsy's negative he'll do genetic testing to see if we have to worry about celiacs and if that's a no, then he'll still go on a 3 month gluten-free trial to see how it affects his blood results.

Which I totally agree with. He used an example right out of my son's medical history. In the spring he was diagnosed with histoplasmosis, a fungal infection that affects the lungs. He was treated and doing so much better. But then in August I noticed my son was more pale and starting to seem off again. Not as bad as the spring but still not quite right. So I wondered if the fungal infection hadn't been totally rid of. I questioned, I wondered. Anyway, the doc used that to say if we chose not to do the scope and just do the diet but didn't totally improved we'd constantly be wondering. Plus, then I think of having to challenge him to end up doing the scope anyway. Also, a confirmed diagnosis will be beneficial in convincing certain family members (I hope!) that NO gluten is allowed. And down the road, it's official for my son who can't question it. But this is just me and our situation. If we had a raging family history I'd probably opt out of it.

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I just want to say it is SO sad that family members don't trust/listen to the moms and dads of children and do what is best for the child. To have to "prove" a diagnosis to a family member is terrible.

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UPDATE - the 2nd set of blood test confirm that my daughter does have celiac. I know the only TRUE way to confirm is by biopsy with the endoscopy, but our gastro dr feels it would be extremly unlikely to find nothing with her #'s being what they are. And he said even if he didn't find anything, we would have to re-do the endoscopy almost every year to constantly check if there is damage and it would be just a matter of time before the celiac "errupted" or started showing outright gastro symptoms.

So we're taking the easy road to get to the same end point and just doing the gluten-free diet. Food shopping today for the first time was overwhelming - took me 2 hours because of reading ingredients and I still don't know what I'm making for dinner. I may just do eggs and bacon cause I can't think straight. I'll need to start planning dinners ahead now I guess.

Thanks for all the support.

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I'm glad you finally have the final answer you wanted. It is kind of crazy to shop in the beginning but you will get the hang of it. In the beginning, a good hint that I read was to list the 10 most cooked meals in your house. You know, the ones you make every week. Write all the items on the menu than look up how to convert those to gluten-free. I think you will find that you cook more gluten-free than you thought and other foods might just take a little tweaking. Take that list and only make those meals to start with. When you feel comfortable cooking, eating and shopping for those meals maybe a month from now, then add new foods. You'll be surprise how quick you learn it all.

For example:

spaghetti - use sauce that is gluten-free, lots are - buy gluten-free pasta, Tinkyada tastes great

salad - naturally gluten-free - get her a dressing that's gluten-free, lots are

parmesan cheese - naturally gluten-free

pudding - make it with corn starch - buy it, check label, probably gluten-free

milk - naturally gluten-free

Go from there. You can ask for more input here if you need it.

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I just want to say it is SO sad that family members don't trust/listen to the moms and dads of children and do what is best for the child. To have to "prove" a diagnosis to a family member is terrible.

I completely agree. It's not the sole reason we're doing an endoscopy with our son but I'm hoping it helps in this situation. It's my in-laws. In their defense, I know they love and care for my children and would do anything for them. But unfortunately my MIL is just not listening to what I'm telling her. Or, I should say she thinks she's listening but she's not ("a little bit here and there won't hurt, just a lot at one time"). Even my parents, willing to learn and know all about it, have no idea of everything involved and were surprised by some of the stuff I've learned and had no idea.

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