Enterolab results

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suzieq
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Enterolab results

Post by suzieq »

Hi all,

I received my results when I was on vacation. I did not follow a gluten free diet on vacation but the Entocort kept the D away. Going by the results, I really need to start over.

They are:

B) Gluten/Antigenic Food Sensitivity Stool/Gene Panel
Fecal Anti-gliadin IgA 48 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 16 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 13 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 16 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

I read the interpretation, but I don't understand the gene test results. Can anyone help?

Thanks,
Susanne
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tex
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Post by tex »

Hi Susanne,

Well, unfortunately, the gene test results show that not only do you have a celiac gene, (the 0201 allele), but you have double DQ2 genes, (HLA-DQ2,2), which usually carries a tendency toward multiple food intolerances, and heightened food sensitivities. IOW, you may possibly have additional food sensitivities beyond those that were included in the test, and you may be more sensitive to some or all of those foods than many of us. If the Entocort is working so far, though, that's a good sign, and maybe you are an exception to the rule that people with double DQ genes are usually more sensitive.

Incidentally, you have the same genes as Sara.

Do you mind if I add your results to our collection of test results?

Thanks,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Gloria »

Tex wrote:you have double DQ2 genes, (HLA-DQ2,2), which usually carries a tendency toward multiple food intolerances, and heightened food sensitivities. IOW, you may possibly have additional food sensitivities beyond those that were included in the test, and you may be more sensitive to some or all of those foods than many of us.
I think that we have been surmising that all double DQ genes indicate a predisposition to multiple food sensitivities, but Dr. Fine distinguishes between having double DQ1,1 or DQ3,3 genes and having double DQ celiac genes. Double DQ celiac genes indicate a more severe form of celiac disease, but not necessarily multiple food sensitivities. I consider having multiple food sensitivities to mean being intolerant to more (usually many more) than the basic 3: gluten, casein, and soy.
And according to my more recent research, when DQ1,1 or DQ3,3 are present together, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).
http://www.enterolab.com/StaticPages/FaqResult.aspx

I read this statement to mean that having double DQ1,1 or DQ3,3 genes portends stronger reactions (what we interpret to mean multiple food sensitivities), in the same manner that having double DQ2,2, DQ2,8 or DQ8,8 means that the individual will have a more severe form of celiac disease, ie., be more reactive to gluten.

This means that Susanne will have very strong reactions to gluten, but not necessarily have multiple food sensitivies.

Someone like myself or Polly, with DQ1,1 genes will be strongly reactive to all foods to which we are sensitive.

That's my interpretation FWIW.

Gloria
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Post by sarkin »

Susanne,

I did a double-take when I saw your double DQ2s - as Tex said, we share those precise genes. I was totally flabbergasted by my results, even though I already knew for sure I couldn't eat gluten or dairy. How are you doing with the news?

It is great the Entocort got you through the vacation, and will surely be of further help to you as you go forward. I have been really lucky to be able to make progress with diet alone - as Tex says, especially with the genetic factor. I can tell you that, without Entocort, a very small inadvertent amount of gluten had a very drastic effect on me. We are all different, and our matching genetics are not the whole story, but my cautious approach has been good for me, so I'm a bit of a 'true believer' about it.

I believe you will be amazed at how much better you feel dropping these foods to which you have a proven immune reaction. I am not considering myself out of the woods, but feel very encouraged, and hope you soon find the foods that work for you and accelerate toward healing.

I just saw Gloria's thoughts, and perhaps she is right - that our gluten sensitivity is fierce, but we are not *necessarily* at greater risk for additional food sensitivities. Let us both hope so.

(Gloria, I am thinking of Kari, who has double copies of the celiac gene that Susanne and I also share, and multiple food sensitivities... this is complex, and I wonder whether Dr. Fine would be anecdotally interested in our observations?)

Would love to hear what you're thinking (my first panic was - what's for breakfast???),

Sara
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Post by Gloria »

Sara,

This isn't a one-size-fits-all disease, unfortunately (or fortunately, depending on the severity of symptoms :smile:).

Ginny, for example, doesn't have double DQ genes, yet she is sensitive to a large variety of foods, likely because of the mast cell issue. I'm not sure if Kari suspects mast cell issues or not. Harma does have double DQ3 genes and is multiple-intolerant.

I'm sure that there are many factors which contribute to our food sensitivities. I suppose the true evaluation can be made once we're in remission and finally have sorted our intolerances from our irritants. I've always hoped that my sacrifices now will mean that I'll be able to eat many more foods later, like Tex can. But Tex doesn't have double DQ genes, so it's more likely that I'll end up like Polly, with a more limited selection of foods. Still, it would be more than my present selection - and I'll take that!

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Post by dgshelton »

Susanne - First let me say that I'm sorry that you've been hit with the double whammy. I also have one celiac and one gluten sensitivity gene, but mine aren't the double deuce. I would agree that you need to start over. Gluten is definitely not going to be your friend. The Entocort is keeping the D away now, but you will eventually have to get off of it and without a change in your diet, the D will return. I know this is a tough pill to swallow, I was just where you are a couple of months ago and like Sara said, I sat there and cried and wondered what in the world I would eat. It's only a couple of months later and I am slowly, but surely, figuring it out. It's not fun sometimes, but it's what I have to do to feel better and feeling better makes it all worthwhile.

Hugs,
Denise

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Post by tex »

Gloria,

You raise an interesting point, and I do agree that double DQ1 and double DQ3 genes typically designate more sensitivities, and a higher degree of sensitivity than the Double DQ2 designation. However, please note that the 0202 allele is not a celiac gene.

Also, note that the DQ2,2 classification that Dr. Fine mentions in his statement, refers to double 0201 alleles, and not to a combination of the 0201 allele and the 0202 allele. That means, (to me, at least), that Susanne is not subject to a heightened risk of celiac disease, nor is she subject to a more severe form of celiac disease, if celiac disease should develop, (because she has only a single celiac gene).

IOW, Susanne's DQ2,2 result, (which is based on a combination of the 0201 and the 0202 alleles), amounts to sort of a "hybrid" category, (a combination of a celiac and a non-celiac gluten-sensitive gene). Accordingly, I have a strong hunch that the fact that it is a "hybrid" category, probably excludes it from the highly sensitized and multiply sensitized status of the DQ1 and DQ3 designations, and Dr. Fine's statement sort of confirms this, (IOW, it doesn't actually designate a doubling of a category of gluten-sensitive genes, but rather a combination of two different types of gluten-sensitive genes, (celiac and non-celiac). Therefore, until proven otherwise, in the future, I am going to consider that this unique combination of genes is connected with a lower level of sensitivity, and a lower risk of multiple sensitivities, (despite the fact that it connotes a double DQ status). That said, I duly note that Susanne did test positive to antibodies to all the foods for which she was tested, so the jury may still be out for this particular gene combination.

Also, note that Kari has 2 copies of the celiac gene, (the 0201 allele), so she qualifies as someone with a true double DQ2, (celiac), gene status. I also note that even though her egg and soy test results were negative, attaining and maintaining remission seems to be rather difficult, but it might possibly be due to extreme sensitivity to trace amounts of gluten, rather than a sensitivity to many foods, (or, as you suggested, it might possibly be due to a mast cell issue). :shrug: Her MRT/LEAP results might shed some light on that.

Thanks for bringing this up. I've been trying to formulate an opinion on that particular gene combination for some time now, (since I've previously noticed that it does not seem to fit the mold for a typical double DQ relationship), and your post forced me to devote some serious thought to it.

Tex
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Post by sarkin »

Gloria,

Well said. Tex really is an inspiration - and we cannot tell for certain that our own path will lead us to his menu, even if we follow his steps exactly. I think the hope of more foods later (even if it's not manymany more) is a very good motivator.

Denise, you are inspiring - I know how hard this news came, and it's been amazing watching you adapt and deal with the potentially high-risk situations like vacation travel. You go, girl!

Gloria, I think in time we will refine our understanding of the genes and specific food sensitivities fit into a larger picture. For now - I feel I'm in the best possible company on this journey.

Tex, I just saw your post midstream, and I agree - and as you know I have a keen interest in this gene combo. I think the jury is out, but that Susanne and I *might* be lucky enough to be more in your camp - one celiac and one non-celiac GS gene... though maybe we won't "get back" as many foods as you have been able to reintroduce, since we both have clear antibodies to dairy and eggs (and I still don't trust soy). Whether that difference is correct, and whether it's because of the genetics or other factors - we won't know for sure but it will be interesting to see as Susanne and I each continue healing.

I interpret this combo as "maybe yes" to risk of celiac disease, but "maybe not" to a more severe form of the disease, or to multiple sensitivities.

I also believe we are accumulating a large body of evidence that you can be plenty affected by gluten sensitivity, even without one of the genes that's official for celiac disease!

Love,
Sara
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Post by Gloria »

Tex,

I don't fully understand the interpretation of the genetic results; I usually look at similar cases to draw conclusions.

With that in mind, I'm confused by the idea that I'm considered to have double DQ1 genes with the following test results:

HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

But according to your explanation, Susanne does not have double DQ2 genes with these results:

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

It's probably getting too late for me to understand an explanation - you likely did a good job of it above, but right now, it doesn't make sense to me. I think I'll try again in the morning.

Pleasant dreams, everyone! :goodnight:

Gloria
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Post by tex »

Gloria,

Both of your genes are non-celiac genes, predisposing to gluten-sensitivity. That makes your genes sort of "homozygous" in the sense that they are both non-celiac, whereas Susanne has genes which have heterozygous characteristics, in that they are genes from two different categories - one celiac, and the other non-celiac.

Susanne does indeed have double DQ2 genes, but she does not have double DQ2 celiac genes. Only one of her genes is celiac - the other is non-celiac.
Gloria wrote:Harma does have double DQ3 genes and is multiple-intolerant.

I overlooked that the first time through. Here are Harma's gene test results:

HLA-DQB1 Molecular analysis, Allele 1: 0302
HLA-DQB1 Molecular analysis, Allele 2: 0301
Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

Please note that Harma's gene test results are another example of a "hybrid" gene combination. IOW, the 0302 allele is a celiac gene, but the 0301 allele is a non-celiac gene predisposing to gluten-sensitivity. That implies that she should not be at an elevated risk of multiple food sensitivities, nor a heightened level of sensitivity, if we apply the same standards that we applied to our interpretation of Susanne's gene test results, (despite the fact that this is a double DQ3 combination).

That's why I say that the jury is still out on this type of gene combination.

Tex
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Post by dgshelton »

Tex - Now I'm confused. I have the 0302, celiac gene and the 0202, gluten sensitivity gene. I just went back and read Dr. Fine's interpretation of my gene test and he clearly states that this combination puts me at risk for a more severe form of celiac or gluten sensitivity. When you say heightened sensitivity are you talking about things other than gluten? My brain is probably to tired to try to decipher this tonight too.

This is the interpretation from Dr. Fine:

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302). Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a second gene that by itself can rarely be associated with celiac sprue (HLA-DQ2 other than by HLA-DQB1*0201), and when associated with one of the main celiac genes, strengthens the predisposition to getting the disease, and with more severe manifestations. Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac sprue may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration

Hugs,
Denise

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Post by dgshelton »

Thank you, Sara. You have inspired me!

Hugs,
Denise

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Post by sarkin »

Denise,

Funny, that you posted the interpretation - I went and reread it last night myself. (Mine, of course, is the same as yours, and Susanne's...).

I need to revise my "maybe yes" and "maybe no" from what I said above: "Probably yes" to celiac disease, "maybe yes" to a more severe form - or a very severe sensitivity to gluten?" - and "maybe not" to multiple sensitivities (or more accurately, "hope not" - jury's still out).

This discussion is really going to help someone over time, when we have even more of a group understanding of how the different genetics affect our real-world experience...

Susanne, is this helping you decode your results? How are you feeling, in general and about your test results? I think my biggest question at the point where you are was "what's for breakfast?"

Sara
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Post by ant »

Dear All,

This is very interesting (but also makes my head spin trying to work out what it means/could mean :roll:)

FYI, I am.....

HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0302
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)

And I am sure I am multiple intolerant......currently......GF, SF (and other legume F), DF, Nightshade F, Egg F and avoiding most sugars and I still seem to need one entocort a day to ensure firm/firmish BMs.

I am curious about the distinctions being made between 'celiac' and 'gluten sensitivity'. I thought that they were really the same thing at different stages of intensity/ability to diagnose?

All best, Ant
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Post by suzieq »

Hello everyone,

What am I having for breakfast? I have been having gluten free cinnamon Chex with blueberries or strawberries (I also eat my cereal dry, can't stand it when it gets soggy), snacking on Larabar's snack bars (gluten, soy, casein free ones), bought Boar's Head deli for lunch which is supposed to be gluten free on Udi's gluten free bread for lunch, with just a little mustard. Dinner time is another story and I have to work on that.

I remember having hibachi style Japanese food several times in the past, and had severe D shortly afterwards and I know that I can't eat soft shell crab (which I love) because of D and vomiting shortly afterwards.

I will say that one morning, two weeks ago, I had forgotten to take the Entocort and the D was back the next day.

I'm relieved to know what's wrong with me and I will deal with it. I want to get off of the Entocort as quickly as possible. I don't like taking it.

I told my daughter, who also has problems, and she is going to watch what she eats. We thought that she was lactose intolerant but I think there is more than that going on with her. She is a vegetarian and I know that she uses tofu. I don't know if my son has had any problems.

Thank you all for your interpretations of my results. I am going to read them over again, it is still a bit over my head. My head is spinning.

Thanks again,
Susanne
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