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mindypal

Just Got Enterolab Results In, Confused!

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Hi everyone,

Well after getting negative blood work from my gastro doctor, and doing a biopsy last week (still don't have the results from that yet), I just got results back from Enterolab for IgA. Mine was an 11 and they say normal is under 10 and suggested I avoid gluten permanently. For some reason that number makes it hard to think about doing that. If the number was higher I could see a problem, but it's just SOOOO close to normal. Do you all still think it's necessary?

What do you all do as far as restaurants? Just stay away from them altogether? Or are there certain things like french fries that are safe? Part of me wanted to get a positive diagnose just to have an answer but now it's still kinda unclear to me and a little weird to think about completely changing my lifestyle. I'm a single 28 year old gal so I'd be doing this on my own. Any suggestions???

Thanks!!!

:)

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I would try it for a while and see if you notice a difference. I got a 10 on my casein test from Enterolab and I think I notice a difference. My daughter got a 9 for soy and I'm pretty sure she needs to avoid it anyway. We are still trying to avoid both of these for a month at least before re-introducing but keep making mistakes and having a reaction.

Not all french fries are safe. They can be fried with the wheat-covered chicken nuggets or something else and be contaminated that way.

I don't like to eat at restaurants any more but it is hard to totally avoid. I try to eat at the ones with gluten free menus like Outback and PF Changs. Or restaurants with a chef who will make something especially for me.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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I think the positive dietary response is the most important. I just received my Enterolab results and did not have either of the celiac genes, but did have two gluten sensitivity genes. While it's nice to know that I'm not doing any damage when I do mess up, I'm not going to go back to eating how I used to if it's going to make me feel like crap.

As for restaurants, I have found two in my area that work for me and I am pretty much afraid to go anywhere else because the odds of getting sick are REALLY high. I've worked in kitchens and the risk for CC is definately there - its' a gamble to eat out. If you do, I'd make sure to go when it's not busy so that the kitchen staff doesn't get distracted by everything else.

Courtney


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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Thanks for your replies. I went ahead and have been doing the gluten-free diet, at least as best I can for now. I know it must take a while to get the hang of this stuff. Hopefully I'll notice a difference soon! :)

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but did have two gluten sensitivity genes. While it's nice to know that I'm not doing any damage when I do mess up

Courtney, I don't believe this is necessarily true. I was having an autoimmune response and do not have the celiac genes ... I may not be damaging my intestine, but I'm damaging something. It's still very serious even if you "only" have the gluten intolerant genes. Someone please correct me if I'm wrong ....


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Mindypal,

Did you have the complete panel done with the gene test?

My son tested at 10.5 with a malabsorption score just over 500. Enterolab has set the cut off at a point where people notice improvement. I'm assuming their cutoff point somewhat falls in line with a moderate IgG ELISA test. That's just based on my testing. I have yet to get the families results to see if it corresponds to them.

It is totally up to you whether you adopt the gluten free diet, but I would highly recommend it. If my family gets glutened, we have "d". Our numbers were all on the low end.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Thanks for your replies. I went ahead and have been doing the gluten-free diet, at least as best I can for now. I know it must take a while to get the hang of this stuff. Hopefully I'll notice a difference soon! :)

Hi,

I can't tell you what a good blood test number would be in the beginning. I did not have the blood test because I was so sick I had a positive biopsy. I can tell you that after being 100% compliant on the diet for 14 months I had a follow-up blood test this past August. All my values from the complete panel were a "1". This did not surprise me as I feel perfectly healthy. You can play the numbers game until you start to get really sick but my advice to you would be to start adjusting your lifestyle. You remember the old saying "an ounce of prevention is worth a pound of cure", well that just about sums up what will happen it you are gluten intolerant and don't commit to this lifestyle. Good luck.

Tom

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Courtney, I don't believe this is necessarily true. I was having an autoimmune response and do not have the celiac genes ... I may not be damaging my intestine, but I'm damaging something. It's still very serious even if you "only" have the gluten intolerant genes. Someone please correct me if I'm wrong ....

Carla, I'm still unclear on a lot of things. Hence my enormous amount of posts lately!

From what I understand, because I did not have eitehr of the celiac genes, I do NOT have celiac. But I do have gluten intolerance. And again, from what I understand, if I eat gluten it's going to make me sick - obviously! :P But if I go gluten-free for a long while and then mess up now and again, it won't do any permenant damage. I think the autoimmune thing only happens when there's a decent amount of gluten going on - not just a small amount of CC, for example.

I don't know exactly where I gathered the info to make such a decision, in fact it's entirely possible that I've just made it all up! So please - anyone - correct me if I'm wrong.

Either way, I'm pretty much set on being gluten-free for the rest of my life so I guess it doesn't matter all that much.


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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This is from EnteroLabs page:

Our antibody tests range numerically from a positive value of 10 to as high as 350 Units. The average positive value is about 45 Units. The "units" are based on the amount of antibody detected in the assay which is reflected by more color developing as the result of a color-generating chemical reaction. Thus, the more antibody present, the higher the units of positivity. However, the amount of antibody present is not a measure of clinical severity, but rather, the amount of antibody being produced by the plasma cells in the intestine in response to gluten at that site. A positive value of any degree means your immune system is reacting to dietary gluten in the way the immune system reacts to an infection. With an infection, this immune reaction ultimately kills and clears the infectious organism. But with gluten, the reaction continues as long as it is eaten. Thus, the only way to halt this immune reaction is to remove all gluten from the diet. This is true whether your positive test is 10 units, 350 units, or anything in between.

Are the numeric values of antigliadin antibody a measure of severity?

As mentioned above, the numeric value of antibody is not necessarily a measure of severity of how your body is reacting to gluten, or the resultant damage of the reaction. This is because the main perpetrator of the immune response to gluten is not antibody but T lymphocytes (T cells) producing tissue-damaging chemicals called cytokines and chemokines. How much antibody is produced at the stimulus of T cells differs in different people. Furthermore, some people simply do not or cannot make alot of intestinal IgA antibody even though gluten may be stimulating a severe T cell-mediated immune response. Unlike antibody levels, the numeric value of malabsorption test results are an indicator of severity of intestinal damage (see below).

So as far as I understand it it doesn't matter if your result is low or high. You are gluten intolerant no matter what as long as it is positive.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Thanks for that post Jenny. :)

I had read that before.....but it's nice to be reminded.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Guest Kathy Ann

My enterolab numbers were on the low positive side as well. But I had a mild malabsorption, which told me that I definitely had some active damage going on.

Furthermore, I had previously had a saliva test including a "Total Secretory IgA." It was borderline low which might explain my lower numbers on the stool test. If I had never done the saliva test, I might not have realized that I was one of those people (2% of the population) who just don't put out much IgA and will always show lower numbers on those tests no matter how much damage is going on.

It looks to me like ANY antibody activity must be paid attention to. It's like pass or fail college courses or like pregnancy tests. You either pass or you fail, you either are or you aren't.

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This is from EnteroLabs page:

So as far as I understand it it doesn't matter if your result is low or high. You are gluten intolerant no matter what as long as it is positive.

Okay, so then what this means is that ANY time I eat either gluten or casein it will create an autoimmune reaction in my body? And this is why I can never, ever eat these things again, right?

Clearly, I am still in some sort of rationalization stage!!

-Courtney


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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Okay, so then what this means is that ANY time I eat either gluten or casein it will create an autoimmune reaction in my body? And this is why I can never, ever eat these things again, right?

Clearly, I am still in some sort of rationalization stage!!

-Courtney

I am very new at this too and just got my results the other week. My Gluten was 12 and my casein was 11. On top of that my soy was 9 but I am pretty sure I have a problem with soy still, so I don't eat that either.

Even if my results were low there is no doubt in my mind that I am not intolerant to these things because I have been very sick for almost 5 years now and I noticed changes right away after I stopped.

So yes, I would have to say that every time you eat those things there will be an autoimmune reaction.

I am pretty sure I am in the same stage as you. ;) I am trying to make sence of all of this.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Carla, I'm still unclear on a lot of things. Hence my enormous amount of posts lately!

From what I understand, because I did not have eitehr of the celiac genes, I do NOT have celiac. But I do have gluten intolerance. And again, from what I understand, if I eat gluten it's going to make me sick - obviously! :P But if I go gluten-free for a long while and then mess up now and again, it won't do any permenant damage. I think the autoimmune thing only happens when there's a decent amount of gluten going on - not just a small amount of CC, for example.

I don't know exactly where I gathered the info to make such a decision, in fact it's entirely possible that I've just made it all up! So please - anyone - correct me if I'm wrong.

Either way, I'm pretty much set on being gluten-free for the rest of my life so I guess it doesn't matter all that much.

I am like you in that I do not have the celiac genes, but I do have an autoimmune reaction to gluten. Even for a celiac, the damage heals .... and I know a small amount of cc makes me very ill for over a week. I wouldn't assume that the autoimmune reaction depends on the quantity of gluten consumed.

I think the reason we're so confused is that there doesn't seem to be much research on gluten itolerance vs. celiac. I think both are basically the same. I know that I've been every bit as ill as a celiac!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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