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Why Endoscopy If Blood Tests Show Celiacs?

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If my blood tests came back very high (the one that is supposed to be 10 was over 100, and the one that is supposed to be around 5 was 67), and my doctor has told me that I have celiacs, then why do I have to get the endoscopy?

Also, can I do this all on my own? Or do I need to find a nutritionist even if my insurance won't cover it?

Thanks for the help!

Katie

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I have read on another Celiac oriented website that other auto-immune diseases can cause a false positive. The endoscopy is s check against that. I can't provide any information as to how common/likely that is.

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Katie:

If I had it to do again knowing what I know now I would go with the blood test, stay gluten free and then have the blood drawn again in a couple of months and the numbers should go down to normal. If they don't have the doctor look for something else, if you feel better and the numbers are normal it would confirm in my own mind that it is celiac.

I think there is so much information out there now you can probably find out what is gluten free on your own, at least I didn't find that a nutirtionist was that helpful, she didn't know that much about it. This site will help you a lot.

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Another reason to have the biopsy is that a positive biopsy result can also make you eligible for some medical studies, etc.

However, for your own peace of mind, with the blood test and trying the diet w/ a positive response, meaning an improvement of symptoms, would be diagnosis for me enough. I agree with the previous poster who said following up to see if your blood tests change after a period of months on the gluten-free diet. (My daughter went from the 100's range to the normal range with just 3 months being gluten-free).

If your insurance doesn't cover a nutritionist, many of which are not entirely knowledgeable about Celiac Disease, you can probably achieve the same guidance from a site like this and many books that are available about the disease.

I have learned more from this web site than any other resource.

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If the insurance won't pay for the nutritionist, I would skip it. By the time I was able to get in, I already knew just about everything she told me. I think she answered two questions for me and I could have posted them here and would have gotten the same answer.

My daughter's GI said that he thinks the endoscopy will probably be phased out over the next ten years or so. The old blood test (I think it was just the IgA) had a lot of false positives so then they felt the need to scope. The new test (Ttg) is much more reliable. He thinks that once the data proves it out, the scoping will be eliminated but that won't be for awhile yet.

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My GI diagnosed me based on my sky high numbers, but he did the endoscopy and colonoscopy to make sure there was nothing else going on.

I had been sick for a long time and he thinks my celiac disease has been active all my life, so he wanted to make sure there were no serious complications developing.

If your GI is only doing it for confirmation of the diagnosis then you might not need it, but he might be checking for other things as well depending on your symptoms and your age.

I saw a nutritionist and thought that was totally worthless for me. I had already read a lot about the diet by the time I saw her and she was giving out some old and incorrect information.

Furthermore, she was unable to answer the only question I had, so it was a waste for me.

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Guest j_mommy

I had an endoscopy as well. They use it as a gold standard for testing celiac....it's also good to check to see if anything else is happening.

I have never seen a nutritionist. My 6 month blood work was down to normal levels so I'm doing something right. I would wait, do checking and learning on your own. If you are having problems then go to see someone...preferably one knowledgable with celiac.

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If my blood tests came back very high (the one that is supposed to be 10 was over 100, and the one that is supposed to be around 5 was 67), and my doctor has told me that I have celiacs, then why do I have to get the endoscopy?

Also, can I do this all on my own? Or do I need to find a nutritionist even if my insurance won't cover it?

Thanks for the help!

Katie

I was in the same boat as yourself....I failed 4 out of 5 of the blood tests done and my numbers were ridiculously high.

I may have considered an endoscopy but at that point, I was so sick I was losing a pound per day and the stupid doctors needed "time" to set up an endoscopy! By the time they got around to it, I would have had to be hospitalized from dehydration and low body weight.....no thanks! I immediately went gluten-free and 3 days later, my most severe symptoms started to subside all on their own. I had my answer.

If your doctor did an EMA blood test on you and that showed positive, you have celiac disease. It's specific to celiac disease only. I probably would advise going gluten-free based on blood work and if your symptoms do not improve within a week, you may have to reconsider the scope to see if there are any other problems. It really is personal choice and you have to do what makes you comfortable.

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Thanks everyone! This is such a wonderful site! I'm going to go ahead and have the endoscopy and skip the nutritionist for now! I'm trying to start the gluten free diet and hopefully it will get easier in time...right? You all are wonderful!

--Katie

P.S. My mom and my sister are both joining me on this gluten-free diet as they both have some of the Dermatitis Herpetiformis symptoms...gotta love family :D

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I didn't have an endoscopy (blood test and very positive dietary response), so I'm sure someone else on here will come along with an answer, but I don't believe you're supposed to go gluten-free before the test, especially if you will have to wait a while.

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Sounds like an absolute given that either gluten intolerance or celiac is a family problem for you!

Which means that the GI doc will be very happy--he'll make lots of money doing endoscopies on all of you to confirm what the bloodwork already tells him--you shouldn't eat gluten.

The bloodwork is more accurate than the endoscopy; you have 22 feet of intestine, and they only take a few 1/4"- 1/2" samples. Let's say a total of 6 samples--that's a total of 3 inches at most out of 262 total inches of intestines. Remember that villi damage is often patchy, and it becomes clear that the odds of hitting an affected spot are not great. So a negative biopsy doesn't mean that your villi are in good shape. It just means that they didn't happent o hit an affected area, and you still don't know if there ARE any affected areas, or how many if there are.

Not to say that there is no value whatsoever in an endoscopy; I am just saying that if gluten is the one and only problem, then you don't need an expensive invasive endoscopy along with the risks of twilight anesthesia. You just need to go off gluten.

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.... you have 22 feet of intestine, and they only take a few 1/4"- 1/2" samples. Let's say a total of 6 samples--that's a total of 3 inches at most out of 262 total inches of intestines. Remember that villi damage is often patchy, and it becomes clear that the odds of hitting an affected spot are not great. So a negative biopsy doesn't mean that your villi are in good shape. It just means that they didn't happent o hit an affected area, and you still don't know if there ARE any affected areas, or how many if there are...

This is just not a realistic picture of what happens. The endoscopy is done by looking with a small camera at the small intestines and taking a biopsy on sites that appears to be damaged. This greatly increases the odds of finding damage if it exists versus the random sample alluded to in the quoted portion.

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From a talk by Dr. Kenneth Fine:

"Small Bowel Biopsies

Samples of tissue lining the upper small intestine are taken with an instrument inserted through the throat and stomach. The tissue is examined for damage under a microscope. This test been a standard but it also has some reputation for not finding any damage in some patients that nevertheless have better health on a gluten fee diet. Sometimes the small bowel damage is patchy and is missed by the biopsy. Sometimes damage is too small to easily find under a microscope. Sometimes reactions happen elsewhere in the body without visibly affecting the upper small intestine.

Small bowel biopsies can be useful in seeing if the intestines have been very badly injured, but they cannot be relied upon for a confident proof that a patient has no reaction to gluten."

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If my blood tests came back very high (the one that is supposed to be 10 was over 100, and the one that is supposed to be around 5 was 67), and my doctor has told me that I have celiacs, then why do I have to get the endoscopy?

Also, can I do this all on my own? Or do I need to find a nutritionist even if my insurance won't cover it?

Thanks for the help!

Katie

I would have the endoscopy for the fact that, they will see how much damage you have, check for other damage as well to your small intestine and esophagus. I had my endoscopy done and found out that i had done damange to the bottom of my esophagus right into my intestine. I had patches that showed healing vili as well as damaged vili. When I have my follow up scope, they are hoping that the intestine is on its way of healing. They use this as a base, (kidna like a mammogram)its not fun, but on the flip side, there is no prep like the colonoscopy :). Your insurance company should cover the nutrition visit because you have a diganosis. But you really need to find someone who knows what celiac is. Good luck in what you decide. Lorrie

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Small bowel biopsies can be useful in seeing if the intestines have been very badly injured, but they cannot be relied upon for a confident proof that a patient has no reaction to gluten."

There is no doubt that any medical test can yield false results and/or miss the problem. My issue was with you taking non-quantified phrases like "sometimes" and "usually not great" and throwing out numbers of inches to present a distorted view.

Of course a bioposy isn't proof that a patient wil have no reaction to gluten because it only tests for one type of reaction (classic celiac auto-immune villi damage) and doesn't test for classic allergy or other intolerances.

It comes down to what you want and need to know. If you just want to feel better, a dietary response without any other test is sufficient. But since many diseases occur in clusters, there are reasons to know exactly what is going in the body to cause the reaction to gluten. It isn't just to make money for a doctor.

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@Alaskaguy With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent
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