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Nikki'smom

How Important Is An Endoscopy To The Diagnosis Of Celiac?

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I am new here and I have tons of questions as you can see from ny introduction post :D

Long story short it looks like my DD's endoscopy might have to be postponed because of insurance reasons.

The more i reasearch this the more I wonder how truely important is an endoscopy to get a true diagnosis of Celiac. my DD's dr said her blood tests show she has it about 90% sure but since it is such a life altering change she feels that the endoscopy is very important and so does my husband.

In some of te research I have done it looks like the scope is only to tell how much damage has been done to the villi?

Any help answering this question is very appreciated and if any one has links to studies that show it is or isn't neccesary would be wonderful!

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I am new here and I have tons of questions as you can see from ny introduction post :D

Long story short it looks like my DD's endoscopy might have to be postponed because of insurance reasons.

The more i reasearch this the more I wonder how truely important is an endoscopy to get a true diagnosis of Celiac. my DD's dr said her blood tests show she has it about 90% sure but since it is such a life altering change she feels that the endoscopy is very important and so does my husband.

In some of te research I have done it looks like the scope is only to tell how much damage has been done to the villi?

Any help answering this question is very appreciated and if any one has links to studies that show it is or isn't neccesary would be wonderful!

Hey Nikki's mom,

I am glad that you are finding alot of good information here.

There are three ways to diagnose Celiac.

1. Positive Blood Work - which you have

2. Positive Endoscopy/Biopsy

3. Positive Dietary Response

If you daughters blood work is 90% positive, the remaining 10% is denial. B). With a diagnosis of Celiac, even a slight positive is still considered positive.

An endoscopy can be hit or miss and can rule Celiac in, but it cannot rule it out. It will not be a guarantee.

Good luck in your decision.

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The only point I have to add would be if your daughter followed the gluten-free diet after her positive blood work and noticed tremendous improvement, the comment about it being a "life altering change" would become a moot point. I also only went as far as the blood work because I failed all tests in the very high range. Three days after going gluten-free, the worst of the symptoms stopped completely and it only got better and better after that. I could not wait for the endoscopy because I would have had to be hospitalized by the time those dopes got around to scheduling it.

From my perspective, the diet is not that difficult to learn and adhere to, once you have the basics down and start to feel comfortable with it. It may be more difficult for a younger child because they won't be able to have McDonald's and those other things that kids like to do. On the bright side, there is so much delicious gluten-free food out there, your daughter will not be disappointed and I'm sure she'll be glad when all her symptoms go away for good.

From my biased point of view, the only thing the biopsy does is make the doctor wealthier. I would be very hesitant to do such an invasive procedure on a child. Tell me, did one of the tests run include an EMA (endomysial)? That test is 100% specific to Celiac....if it was positive, your daughter has celiac disease, without any doubt. It should have been part of the blood work they did.

Whatever your family decides, I hope your daughter feels better soon.....I feel her pain!

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Thanks for you fast responses!

She had 4 original blood tests and I believe these are the 2 that the dr said were for Celiac.

Transglutaminase IGA AutoABS >100.0 (referance range <4.0)

endomysial IGA AUTO ABS >=1:16 (referance range <1.10)

I believe those are the 2 main ones for Celiac she had 2 others that came back fin but the gasrto said they were good info to have but not needed to tell if it was celiac.

she did have another blood test at the appouintment last week for anemia and it showed she is starting to become anemic. The other test she had came back noraml. The dr just called with what the results were today and they are mailing me the results.

We haven't started the gluten free diet yet because I thought starting it would affect her endoscopy and since ths was all moving so fast and the dr was originally going to scoper her this Wed and I just got the blood results with the pos Celiac diagnosis back last Wed we figured wait.

I totally get what you are saying about the scope being invasive that is why I am torn part of me feels she needs it the other part thinks the blood tests are enough but DH wants the scope to be sure. Though I don't think he has done the research I ahve on it yet. So any studies you guys could give me links to to help me make my dicision would be wonderful.

The thing with my DD is I hionestly don't think most people would realize she had something worng unles they had been through the hell I went through with my DH and his Ulcerative Colitis. She rarely complains and of course since she has been getting pokked and prodded the past 2 weeks she swears her tummy is just fine. I know from past experience that it isn't and now with the blood work showing what it does I know I was right. Also looking bakc on her life I have always suspected she would be the kids with the ibad colon or intestonal issue. Maybe a mom just knows! With my DH's family history we pretty much knew one of our kids would have something but prayed we were wrong.

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You know, one way to avoid the endoscopy but to help solidify a Celiac Disease diagnosis would be to get the gene test done. If with her blood test results and family history she also had one of the Celiac genes, you would have a fairly definitive diagnosis. You can get a swab test done through www.enterolab.com for (last time I checked) $149. This is far cheaper than going through Kimball or Prometheus. They e-mail you the results in two weeks. You just twirl the swabs up against each cheek then send it back to them in sterilized tubes which they provide. There are some who question the validity of the other tests that they provide, but the gene test is reliable (they work with Red Cross).

Our son had very high blood test results, and since I didn't know as much as I do now, he also later had the endoscopy done. It did show severe damage. But I know the endoscopy can be a hit or miss process since you can't always see everything with the naked eye and therefore know exactly where to biopsy. Knowing what I do now, I wouldn't do it that way again. In fact, with our younger daughter, we noticed she was having some issues with digesting gluten, too. So, we got the gene test done through Enterolab. She had the common Celiac gene (HLA-DQ2 subtype 2 - less common one is HLA-DQ8). So with her brother's history, already noticeable issues with trying to digest gluten, we're treating her as if she has the disease, too. When she gets quite a bit older, if she wants to challenge herself with gluten she can. But we're not ever going to see our child get that sick again if we can help it. And even if she doesn't "show" how sick she is, I don't want there to be quiet damage either.

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Guest lorlyn

My 10 year old had the endoscopy after having positive blood work 10 months ago. There are to me two sides to this 1. if she gets the scope done and it comes back positive it will be on her medical records for life making it harder to get insurance once on there. 2. the other side is if your child is young and in school or going to college one day it will help legalley to have documentation from her doctor for days missed from school and gluten free food. I now think I probely would not had the scope done since it is not always reliable. I just feel bad that she will always have to carry this burden of having a disease on her record and not even needing a presciption. Always being a high risk even though she she be one of the healthies kids in her class <_< It is a hard decision as a parent just follow your heart. Good luck

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We did do the biopsy for my son but at the time I was uneducated about this and just followed the doctors say. I now believe it is not necessary to prove to myself it is Celiac. But on that same note, some doctors won't give a diagnosis without it (would yours be willing too?). My only concern would be if you eventually wanted to get a 504 plan for school, do you need a definite diagnosis from a doctor? I know a lot of people worry about the insurance issue with having the diagnosis later in life but I worry about getting them what they need now at school. So far I haven't needed to get a 504 because the school has been very cooperative (so far anyway) but I do have a positive diagnosis in his school records, I don't know how it works if you don't.

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thanks again every one!

I think we ahve decided to go through with the endoscopy. I called her ped last night whom I adore and he talked to me for almost a half hour and told me all of the reason that if it where his kid he would do it.

Not sure if it will happen tomorrow because of crazy insurance/dr issues but her ped dais if the drs and insurance don't get what I need them to streighten out he will call the office and make sure it gets done before school starts for her. Which I loved!

Funny thing is I told my DD it might not happen Wed and reminded her that meant she has to wait to go out to eat to the pancake house she choose to go to after and she actually got upset she wasn't having it! LOL I know wrong place to take her but it can be her last good meal so to speack!

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I have to respond to this, especially after just going through this with my 2 year old. I was absolutely scared to death to have my daughter go through an EGD (upper endoscopy and biopsy). When I was in the peds GI office, I didn't ask about why we had to do the EGD in the first place if the blood samples said that it was 90% sure that it was celiac. What in the world would doing more prove? Well....I left the office without asking and it bugged me for a long time prior to the EGD. I finally asked before she had it...what is the use of this if we are 90% certain that it is celiac?" The answer was very appropriate!

1st of all, a strict glutan free diet is extremely difficult to follow for most people. It is labor intesive for the parents, family and friends of the child. So, why have a child and family go through this for a lifetime, if it truely isn't celiac disease? Second, the symptoms of celiac can be very similar to other disorders. While the blood work may be positive, you may be seeing a false positive. The gold standard in medical diagnosis of celiac disease is a positive biopsy.

My daughter ended up with a positive celiac panel, and I found out yesterday afternoon that she had a positive biopsy. There is no question in my mind that she has celiac disease. Now, I have to admit, prior to the biopsy...I questioned the diagnosis. I now have NO QUESTION THAT THIS IS IT!!!!!

I realize that there are many gray areas, and "clear as mud" test results out there. I wouldn't have a clue how to approach those, I am not a ped GI specialist. I however, trusted my physicians experience and expertise, that what needed to be done was appropriate for my daughter. I know that there is so much information out there and some of it is unclear. We all have to go with our gut instinct too.

I think that you have made a wise decision to go through the biopsy. I'm very new to this, but after just going through this myself with my daughter last week....I feel very strongly that it is the right thing to do....

Julie

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Your decision to do the biopsy is a private one, and although I know your daughter is a Celiac, I wish you luck with the whole procedure. However, she has a positive EMA, from the looks of it, and is becoming anemic.....that's more than 90%, it's about 99%. Also, to add one comment made regarding false positives...there is no such thing as a false positive for celiac disease, only false negatives. You will not test positive for celiac disease if you do not have it. The diet will also not show improvement if you do not have celiac disease. Believe me, if you are flattening your villi eating gluten and then stop, the improvement will be so dramatic, you'll feel like a new person.

One other thing to be aware of....her Ttg was over 100 so your daughter will most likely show intestinal damage. That is a very high number and the Ttg correlates to damage. Don't be surprised if your doctor pressures you into having more biopsies done after 3-6 months, as they want to check for healing. I refused these also because all my symptoms went away and I gained 15 pounds, which I have never been able to do my whole life. That was better proof of healing than any doctor could tell me!

One last thing....the diet is all about attitude. It is not as difficult as some feel and once you learn the ABC's of gluten free life, you'll become a pro. If you think it will be difficult, it will be. Very best of luck to you all!

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Julie, Good luck to you and you new little one and the new life you have. I am sure we will be joining you in a week or so. What you said is pretty much what our ped and our family gp said as well as bth said if it was their child (and both have childern around my DD's age). So I now feel confident in my choice to go ahead with it.

Gemini, you are right the discion to do the biopsy is a personal one and no matter if some one chooses to do it or chooses to say the blood work is enough it has to be the right choice for them!. Thank you for sharing your experience with me :) Youa re 100% right it is all in the attitude! Right now I am kind of sad thinking about what my daughter will miss but I am getting much better and starting to think wow she is probabnly going to be healthier then all of us once this is all ut into place! LOL

Also thank you to all again! So far you all have been great I love to see that it looks like every one has made a different choie about the testing that fuits their needs and the rest are supporting the choice even if it isn't the same choice they made. That is WONDERFUL!!!!!!!!! I am sure I will need all your advice and help in the comming weeks as we approch the next step in our lives.

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Second, the symptoms of celiac can be very similar to other disorders. While the blood work may be positive, you may be seeing a false positive.

What other disorder, with symptoms similar to celiac, would cause a positive blood test? I've heard the "other disorder" phrase bandied about a lot, with no specifics. In my reading, I haven't come up with any other conditions that would 1) cause symptoms that could be mistake for celiac disease, 2) cause positive bloodwork results (esp. tTg and Ema), and 3) respond to a gluten-free diet. Am I missing something?

Rho

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