Am I Missing Something?

[sugarsue]

We went to dd's doctor today. He read her celiac panel and based on the results believes that she is gluten intolerant but does not have celiac. He admits that we just don't really know though but that further testing is not necessary since she obviously needs to be gluten free but he also said that I don't need to worry about cross contamination, just work hard at keeping all gluten out of her diet (so food that says made in a facility that processes wheat is OK for her).

Don't I want to try to be sure she does not have celiac first because otherwise I SHOULD worry about CC?

As parents, do you believe I should go ahead and get the enterolab DNA and stool test or should I just save my money and do my best at gluten free? This test would tell me whether she has positive DNA. If she did, I would assume she had celiac disease and if she didn't then I'd know that she doesn't. Have any of you gotten these tests from there and were they helpful in clearing up any confusion? Are there any other specialist that we should go see? Does it matter since I am committed to going gluten-free since I already see it's benefits for her?

I posted similar confusion on the testing fourm yesterday before the doctor's appt. and I guess I'm still confused! Thanks for your thoughts on this.

Susan

[ShayFL]

THAT is exactly why I did Enterolab and Genetic testing. I knew gluten was a problem, but since my bloods were Neg (low IgA) and I refused biopsy, I needed to know. And it is important to know the difference because CC for a Celiac can be very damaging. CC for a gluten intolerant is just uncomfortable.

I think most doctors are pretty ignorant when it comes to Celiac and Gluten Intolerance. You need to strive for 100% gluten-free. gluten-free kitchen is best....new teflon pans, new cutting boards, new wooden spoons, colanders, etc. Make sure toothpaste and toiletries are gluten-free.

I avoid "Manufactured in a facility that processes wheat" unless they also go on to say "Good practices utilized to avoid CC" or something like that. I have not had a problem with these. My thinking is there is a big difference between a company who processes foods on the same lines and doesnt give a rats butt about CC and slaps a warning on so they dont get sued AND a company who is VERY AWARE of CC and goes through efforts to clean/sanitize their equipment or to segregate ingredients to avoid CC.

[ArtGirl]

What ShayFL said.... I couldn't have said it any better.

I didn't go through any doctor but "self" diagnosed - and was confirmed in this diagnosis by Enterolab results, along with confirming that I need to avoid dairy and soy.

If I were in your place, I would not risk CC with my child but would strive for the 100% gluten free. She will never get totally well if she's constantly reacting to tiny amounts of gluten.

[Darn210]

We went to dd's doctor today. He read her celiac panel and based on the results believes that she is gluten intolerant but does not have celiac. He admits that we just don't really know though but that further testing is not necessary since she obviously needs to be gluten free but he also said that I don't need to worry about cross contamination, just work hard at keeping all gluten out of her diet (so food that says made in a facility that processes wheat is OK for her).

Don't I want to try to be sure she does not have celiac first because otherwise I SHOULD worry about CC?

As parents, do you believe I should go ahead and get the enterolab DNA and stool test or should I just save my money and do my best at gluten free? This test would tell me whether she has positive DNA. If she did, I would assume she had celiac disease and if she didn't then I'd know that she doesn't. Have any of you gotten these tests from there and were they helpful in clearing up any confusion? Are there any other specialist that we should go see? Does it matter since I am committed to going gluten-free since I already see it's benefits for her?

I posted similar confusion on the testing fourm yesterday before the doctor's appt. and I guess I'm still confused! Thanks for your thoughts on this.

Susan

Enterolab will not diagnose Celiac disease. They will diagnose gluten intolerance and you already know that. Having one of the recognized genes and gluten intolerance also does not mean it is Celiac disease. About a third of the country has one of the genes but we know the numbers for Celiac disease are much lower. A small percentage do not have one of th main genes yet have a Celiac diagnoses. This money spent will not get you a Celiac diagnosis. You need a positive blood test and/or a positive biopsy. Did you have and endoscopy done? . . . not that you need to, that's up to you. You do have a gluten intolerance diagnosis from the doctor and that should get you the cooperation from the school district which is what I would consider to be the most important thing. That and your committment to a gluten free diet.

Is your daughter gluten free now? Have you noticed a reaction from cc? What kind of reaction does your daughter have when cc'd? My daughter has a Celiac diagnose but she is not overly sensitive. I have not seen a reaction out of her unless it was a significant amount ingested. However, I am still careful with cross contamination at home. As far as products are concerned, she does eat products from shared facilities without any problems. I know this is not the case for all celiacs/gluten intolerants. When I asked my GI his opinion on this subject the answer was . . . if she has a problem with a (shared facility) product then quit using it. I do stay away from certain companies (Quaker comes to mind).

CC for a gluten intolerant is just uncomfortable.

I know some people on this board who would strongly disagree with you on this one.

[ShayFL]

To differentiate Celiac is an auto-immune disease and ingesting gluten triggers a cascade of auto-immune response. Being gluten intolerant is not auto-immune (according to the best research we have to date). If you are GI your body will not launch an auto-immune response to CC. There will be consequences no doubt. For me it is vertigo and migraine....which is VERY UNCOMFORTABLE. But according to all of the research, that gluten is not causing my body to attack my villi. That was the point I was getting at.

Many in here make a VERY STRONG distinction between Celiac and GI individuals, but agree the solution is the same....gluten-free diet. There are also people in here that believe the two are connected and one and the same, just different stages of the same disease.

We can all pick sides and decide for ourselves what makes sense.

As far as Enterolab goes, I say time and time again that it does not Dx Celiac. Some of the time bloodwork and biopsy fail to Dx Celiac. Enterolab is just another tool that we have at our disposal.

For me personally if my child had all of the symptoms of Celiac but every standard test came back Neg. But she had a POS response to the diet and I wanted some extra support for my decision to go gluten-free with her, I would use Enterolab. I would get the genetic testing because IMO if she had obvious gluten intolerance and Celiac genes, then I would feel pretty darn strong in my decision. No it does not mean she has Celiac disease for certain. But if the genes werent there, I would at least feel better knowing it wasnt Celiac and just an intolerance.

[ShayFL]

Good Thread:

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[sugarsue]

THAT is exactly why I did Enterolab and Genetic testing. I knew gluten was a problem, but since my bloods were Neg (low IgA) and I refused biopsy, I needed to know. And it is important to know the difference because CC for a Celiac can be very damaging. CC for a gluten intolerant is just uncomfortable.

I think most doctors are pretty ignorant when it comes to Celiac and Gluten Intolerance. You need to strive for 100% gluten-free. gluten-free kitchen is best....new teflon pans, new cutting boards, new wooden spoons, colanders, etc. Make sure toothpaste and toiletries are gluten-free.

I avoid "Manufactured in a facility that processes wheat" unless they also go on to say "Good practices utilized to avoid CC" or something like that. I have not had a problem with these. My thinking is there is a big difference between a company who processes foods on the same lines and doesnt give a rats butt about CC and slaps a warning on so they dont get sued AND a company who is VERY AWARE of CC and goes through efforts to clean/sanitize their equipment or to segregate ingredients to avoid CC.

This is helpful. I am still going back and forth but I think I really do want the test for her. She had a normal stool last night (first one almost all year) and had not had any of her bad diarrhea for over a week. But then tonight, it was back, really bad . She was scared and I could tell she did not feel well. We don't know what happened. I keep thinking that she played with play dough night before last. How long would it take for her to react to getting glutened I wonder?

Good Thread:

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Great discussion, Thanks!

[sugarsue]

Enterolab will not diagnose Celiac disease. They will diagnose gluten intolerance and you already know that. Having one of the recognized genes and gluten intolerance also does not mean it is Celiac disease. About a third of the country has one of the genes but we know the numbers for Celiac disease are much lower. A small percentage do not have one of th main genes yet have a Celiac diagnoses. This money spent will not get you a Celiac diagnosis. You need a positive blood test and/or a positive biopsy. Did you have and endoscopy done? . . . not that you need to, that's up to you. You do have a gluten intolerance diagnosis from the doctor and that should get you the cooperation from the school district which is what I would consider to be the most important thing. That and your committment to a gluten free diet.

Is your daughter gluten free now? Have you noticed a reaction from cc? What kind of reaction does your daughter have when cc'd? My daughter has a Celiac diagnose but she is not overly sensitive. I have not seen a reaction out of her unless it was a significant amount ingested. However, I am still careful with cross contamination at home. As far as products are concerned, she does eat products from shared facilities without any problems. I know this is not the case for all celiacs/gluten intolerants. When I asked my GI his opinion on this subject the answer was . . . if she has a problem with a (shared facility) product then quit using it. I do stay away from certain companies (Quaker comes to mind).

Thanks, I knew that this test would not gain us a diagnosis but was wondering about learning more about her condition so I may have some guidence on how to best help her with her gluten issues. She is 6 and she has been gluten-free for about 2 weeks now. We have noticed a very good reaction to being off gluten. I don't know if she has had a cc reaction. Today was the first day where I think it may have happened but not sure. I don't know if she is just still working on healing or if she was exposed to gluten that caused her to have a very bad bout with diarrhea tonight. We have not been doing this long enough for me to know how she tolerates shared facilities, etc.

Susan

[ArtGirl]

How long would it take for her to react to getting glutened I wonder?

It varies with the individual. Some as short a time as 20 minutes. For myself, 15 hours (usually the next morning if CC occurred with the evening meal).

[Rachel--24]

We went to dd's doctor today. He read her celiac panel and based on the results believes that she is gluten intolerant but does not have celiac.

What was in the results that prompted him to come to this conclusion?

Does this mean that she did have elevated antigliadin antibodies but nothing positive with regards to the tests that are more specific for Celiac??

If there were elevated antigliadin antibodies.....then I would see no reason to pay for the Enterolab stool test....its not going to tell you anything different. Even if all of her tests were negative...the Enterolab results wont provide you with any new info. with regards to gluten....if you're already certain she has a problem with it.

I used Enterolab after all of my Celiac tests were negative. The Enterolab results were positive but if I were starting all over I probably would just skip the test and continue with the diet. In other words, it didnt tell me anything I didnt know already...and I didnt have a Dr. telling me that I need to be gluten-free. It sounds like your daughter's doctor feels very sure that she needs to be on the diet.

I found the genetic testing to be helpful in my case. Even though its not diagnostic......it did help me to rule Celiac Disease out since I did not carry either of the main genes and my bloodwork/biopsy were negative.

Without being able to diagnose Celiac Disease...Enterolab is basically just a food intolerance test. If your daughter is responding favorably to the diet...then this is a really good sign that she is sensitive to gluten....and feeling better without it. If you're not sure and would feel better doing the test....then you'll have more evidence to support your doctors advice and the positive response to the diet. It may help in the future if you begin to second-guess yourself.

If you dont have a copy of her bloodwork you may want to find out if any of the antibodies were elevated.....because you dont need Enterolab if thats the case. Also, be sure that her total IgA was tested to rule out the possibility of IgA deficiency...because that could result in false negative's.

Good luck.

[sugarsue]

What was in the results that prompted him to come to this conclusion?

Does this mean that she did have elevated antigliadin antibodies but nothing positive with regards to the tests that are more specific for Celiac??

Hi! Her Antigliadin IgG test was positive (84 with less than 11 being in range) and her total IgA was 64 with 33-230 being in range). Do you mean that the IgG test is what diagnoses the gluten intolerance? Some have said that the 64 might indicate low IgA production which is the part that is kind of throwing me off on whether I need to try to determine if it's celiac. Do you have thoughts on this? I am leaning towards non-celiac and I agree with you, she needs the diet so there are no issues there with sticking with it and we do have her doctor's agreement as well.

Thanks!

Susan

[ShayFL]

I also have low IgA (but within range) like your daughter. So I had antibodies.....but not enough to dx Celiac.

Interestingly, my Mom has lower IgA too (must be genetic) and she tested negative for thyroid anitbodies a month before they removed her thyroid. They dx Hashimotos (auto-immune thyroid disease) during her surgery because her poor little thyroid had been attacked severely. Yet, she showed no antibodies with labwork.

So I would not rule out Celiac and assume there is no auto-immune attack going on. She has low IgA IMO and this can skew the result like it did for my Mom (and me).

Did they test the IgG mediated antibodies??

Enterolab also tests for casein, eggy and soy intolerance as well. They do the genetics and so does a lab called Kimball.

[Rachel--24]

Hi! Her Antigliadin IgG test was positive (84 with less than 11 being in range) and her total IgA was 64 with 33-230 being in range). Do you mean that the IgG test is what diagnoses the gluten intolerance? Some have said that the 64 might indicate low IgA production which is the part that is kind of throwing me off on whether I need to try to determine if it's celiac. Do you have thoughts on this? I am leaning towards non-celiac and I agree with you, she needs the diet so there are no issues there with sticking with it and we do have her doctor's agreement as well.

Having the elevated IgG antigliadin antibodies does indicate a gluten intolerance...in my opinion there is no reason to look furthur into that with Enterolab. As far as determining whether or not she may have Celiac you could check to see if she carries either one of the main genes. Even though the genetic testing isnt diagnostic by itself.....it can be helpful.

If I were reacting to gluten, showing elevated antigliadin antibodies and also having one of the genes....I would lean toward Celiac. It may still be a non Celiac intolerance.......but having a genetic predisposition makes Celiac seem more likely.

If you havent started the diet yet you might also consider having the biopsy.....if that came back positive you would have your answer. Many people with negative bloodwork have a positive biopsy and a diagnosis of Celiac Disease.

Since her IgA is on the lower end and she did have elevated antigliadin IgG....you could also request to have all of the bloodwork repeated...this time checking the IgG instead of IgA. They can run the same tests for IgG....and thats what they would do if she were IgA deficient.

If you decide to do furthur you will need to hold off on the diet until all of the testing is over and done with.

[sugarsue]

I also have low IgA (but within range) like your daughter. So I had antibodies.....but not enough to dx Celiac.

Interestingly, my Mom has lower IgA too (must be genetic) and she tested negative for thyroid anitbodies a month before they removed her thyroid. They dx Hashimotos (auto-immune thyroid disease) during her surgery because her poor little thyroid had been attacked severely. Yet, she showed no antibodies with labwork.

Did they test the IgG mediated antibodies??

I don't think the mediated IgG was tested. Interesting about your mom and Hashi's. I put that in my signature just now in case it brings up other conversations about it. I have Hashi's too but my antibodies do show up. I was tested for celiac's a few years ago. It was negative but I knew nothing about it back then so I don't know what my results were. I should go find those!