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Enterolab Results In

Lesliean

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Lesliean Apprentice
Lesliean
Posted

Enterolab came back saying I have 2 copies of the gluten sensitivity genes but I have read enough Hadjivassiliou articles to know we neurological presentors have just as many problems, need a GFD just as much, but often test negative becuase the primary damage is not to the gut (although at day 72 gluten-free all my gut symptoms are gone and they were terrible). Please tell me what you think. I am so unsure of whether I need to be gluten-free and if I need to test my kids (one has canker sores in her mouth all the time which is another big symptom). I need a kind and informed word right now. It's not like I can go to the doctor for it as they are hopelessly behind the data.

Thanks

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gf4life Enthusiast
gf4life
Posted

Hi Lesliean,

I'm not really sure what you are asking. You do have gluten sensitivity genes, and you feel better on the gluten-free diet, but you aren't sure that you should be on the diet, or if your children should be tested? Is that it? I was confused by the statement about the articles you have read, but regardless this is what I have to say.

Yes, you should be on the diet if you have tested positive for the gene, and had symptoms that improved once you were gluten-free. I tested negative for the bloodtests and biopsy, despite 26+ years of symptoms and yes, some of them are neurological. I tested positive with Enterolab for antibodies and genes and have felt so much better being on the gluten-free diet that I don't care what anyone says I do plan to be gluten-free for the rest of my life!

I also did have my children tested through Enterolab. After I got my results I was able to get them bloodtested, but they came back questionable. IgG was the only positive test. They all have positive antibodies and genes through Enterolab, so they are now on the diet and they are all so much more healthy, and growing like weeds! :D I would certainly have the kids tested if I were you.

God bless,

Mariann

skbird Contributor
skbird
Posted

I keep reading all the Entero Lab topics because I am very impatient waiting for my results :huh: but must say I am glad to keep reading that canker sores are a symptom. I have had them my whole life, not frequently (IE probably 3-4 times a year) but every time I have them - something I just take for granted - my husband tries to tell me I have some kind of herpes which I *know* I don't. Was so glad to see it is a symptom of GI because now I can tell him no - it's due to this.

I had one major outbreak when I was 19 on a trip to NYC (will always think of NYC as the place where I was basically sucking Anbesol the whole time) - I must have had about 30 all at once. It was a family trip and my mom told me it was probably a stress-induced virus. Maybe. Or maybe it was a stress-induced gluten reaction. Who knows. It wasn't fun.

Stephanie

KaitiUSA Enthusiast
KaitiUSA
Posted

Lesliean-It sounds to me like you need to be on the gluten-free diet. You have not only the genes but your symptoms went away with just a little trial of going gluten-free. That should be a big hint right there that you should be on the gluten-free diet. Good luck with everything :D

Lesliean Apprentice
Lesliean
Posted
  • Author

I'm sorry to be confusing and thank you for your responses. The gene is the non-celiac gluten sensitivity gene DQ1. But what does that mean?? I read it causes neurological problems but often does not qualify as Celiac Disease becuase it does not usually cause flattened villi but I was having a lot of symptoms. Do you know anything about DQ1 and the importance of a GFD when you have it, and 2 copies to boot?

Leslie

Here are my results:Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 7 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA 6 Units (Normal Range <10

Units)

Quantitative Fecal Fat Microscopy:

Microscopic Fecal Fat Score: 282 Units (Normal Range

<300 Units)

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody 5 Units (Normal Range <10 Units)

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0501, 0604

Serologic equivalent: HLA-DQ 1,1 (Subtype, 5,6)

Interpretation: Levels of intestinal IgA antibodies to gliadin, tissue transglutaminase, and the milk protein, casein, were just below the upper limit of normal and there was no malabsorption of dietary fat.

Although you do not possess the main genes predisposing to celiac sprue

(HLA-DQ2 or HLA-DQ3, subtype 8), HLA gene analysis reveals that you have two copies of a gene (HLA-DQB1) that predisposes to gluten sensitivity.

Although your antibody levels are below the typical cutoff for abnormal values (and hence there is no direct evidence of gluten sensitivity from the antigliadin antibody test), 1 in 500 people are not able to produce significant amounts of intestinal antibodies to gluten or other proteins even though they may be immunologically sensitive to them. Because your gene test revealed that you have a genotype that can predispose to gluten sensitivity, and your antibody levels are nearly abnormal, if you have symptoms or a syndrome known to be associated with gluten sensitivity, a trial of a gluten-free diet would be appropriate.

If you have no symptoms of gluten sensitivity, you may still benefit from a gluten-free diet, or you can continue your general diet and repeat these tests in 2 years as part of your general health screening.

KaitiUSA Enthusiast
KaitiUSA
Posted

It's saying you have a gluten sensitivity gene but not a celiac gene. So basically gluten is bad for you but it's not like a celiac bad. It's saying that it would probably be beneficial for you with the diet...considering your symptoms were alot better maybe that's the way to go

minivanmama0300 Newbie
minivanmama0300
Posted

I don't have any experiance or anything to add, but could you tell me how long you waited for your results? I shipped my dd's sample back a week ago today, and I know they say to wait three weeks, but I am sooooo impatiet!! How long till you got the results?

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Lesliean Apprentice
Lesliean
Posted
  • Author

Enterolab took the whole 3 weeks to get back and I actually called at that point and a very nice and personable man said it was ready and sent it to me that afternoon. Hard to wait, but aren't you glad you did it? No where else do they check for DQ1 or DQ3, the neurological symptom genes, and the sensitivity of the blood work is not good enough to trust your life on. Hang in there and keep on gluten-free. I think Dr. Fine walks on water.

Leslie

Canadian Karen Community Regular
Canadian Karen
Posted

How much does the testing cost? And is it available to Canadians?

Thanks!

Karen

Lesliean Apprentice
Lesliean
Posted
  • Author

It is my understanding that they are available to test Canadians. Should since I am in Alaska, even further than you ;) . Very user freindly system. You order on the net (or I guess by phone although the number wasn't easy to find-I googled to find it). Give a credit card number, it comes in the mail, give sample, call for pick up, and the hard part is waiting for 2-3 weeks. My insurance is paying for all but transport and deductable and they didn't require another doctor to do the ordering, Dr. Fine is cosidered a specialist.

Good Luck!! :lol:

Lesliean Apprentice
Lesliean
Posted
  • Author

It is my understanding that they are available to test Canadians. Should since I am in Alaska, even further than you ;) . Very user freindly system. You order on the net (or I guess by phone although the number wasn't easy to find-I googled to find it). Give a credit card number, it comes in the mail, give sample, call for pick up, and the hard part is waiting for 2-3 weeks. My insurance is paying for all but transport and deductable and they didn't require another doctor to do the ordering, Dr. Fine is cosidered a specialist.

Good Luck!! :lol:

Lesliean Apprentice
Lesliean
Posted
  • Author

Woops-Open Original Shared Link

skbird Contributor
skbird
Posted

I'm at three weeks and two days and I'm impatient, too! Plus I was sent someone else's results last weekend. I have emailed twice but haven't phoned - didn't see a number on the site. I'll give that a try today.

Chomping at the bit! I even dreamed about my results last night!!! LOL

Stephanie

gf4life Enthusiast
gf4life
Posted

Stephanie,

Did you e-mail the lab or Dr. Fine? I have found that Dr. Fine will clear up any problems that you have if you e-mail him directly. His e-mail is on the site, but you have to look for it. If you e-mail the lab they hardly ever respoind and it is not prompt! Dr. Fine has always gotten back to me within 24 hours if it is a weekday, the following Monday if it is a weekend.

They may be thinking they already sent you your results, since you accidentally got someone elses results. It was probably a clerical error, but you should be able to clear it up if you talk to Dr. Fine.

God bless,

Mariann

skbird Contributor
skbird
Posted

Good suggestion, Mariann. I sent earlier today an email to the three emails on the site (but not Dr. Fine's) as well as the "results" email that was used to send me the wrong results this past weekend - I did have a couple of emails with the lab supervisor this past weekend with that one. I'll try to root out Dr. Fine's.

Stephanie

skbird Contributor
skbird
Posted

Well, I emailed the email I found for Dr. Fine (on the finerliving website) and it got returned as I guess it gets too much spam. So then I dug up a phone number and tried calling this morning and finally got through after lunch - they had seen my email and were going to email me later that day but my tests aren't complete yet. So I asked how much longer and she said she didn't know, couldn't guess. Hmmmm.

So I guess I'm still waiting. Bummer!

Stephanie

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