Enterolab Results In!

[Guest scully]

Hi, everyone...

I wrote in a month or so ago about my symptoms. I went through an endoscopy with small bowel biopsy on October 20. He took 6 samples from me and said it looked just fine. I said, "How could it look just fine and dandy in there when I feel so miserable?" I went ahead and started the gluten-free diet anyway, at the behest of his nurse, whose husband is celiac. I also ordered the complete gene and stool panel from Enterolab. (I was only gluten-free for a week or so when I did the test)

I did the tests and sent them back in. Meanwhile, I continued on the gluten-free diet and when I told him that I'd made a 180-degree turnaround in just a few weeks of this diet, he looked at me like I was crazy: "Well, your biopsy was negative..." I told him that I'd ordered these other tests and would apprise him of the results when I got them back, but that the proof was in the pudding as far as my gluten-free diet went. My husband couldn't believe the difference in me. No more nausea, no more alternating constipation and explosive diarrhea, no more GERD, no more distension, cramping, you get the point.

Well, I got the results back and am "currently in an active stage of gluten sensitivity". Here are my results:

Fecal Antigliadin IgA 54 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 34 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 919 Units (Normal Range <300 Units)

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. (mine was 919!!!)

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a 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 the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

What do you think? What does this mean? If my biopsy was negative and all my gene and blood work is positive, does this mean celiac disease or something else? Will my doctor buy these test results? I just want to show him just to say, "HEY! I'm not CRAZY!"

Thanks so much for helping me.

[ShayFL]

Likely your doctor will not view Enterolab as of any value at all.

I was POS with Enterolab. No Celiac genes. But POS response to the diet.

A POS response to the gluten-free diet IS the "gold standard" in my opinion.

[Guest scully]

Likely your doctor will not view Enterolab as of any value at all.

I was POS with Enterolab. No Celiac genes. But POS response to the diet.

A POS response to the gluten-free diet IS the "gold standard" in my opinion.

Well, great. They wanted me to fax my results in to them tomorrow.

Why wouldn't they view these results as having any value? They are the

same tests they give? Tests are tests, right?!

[happygirl]

They are not the same tests. They do not diagnose Celiac.

[Lisa]

Well, great. They wanted me to fax my results in to them tomorrow.

Why wouldn't they view these results as having any value? They are the

same tests they give? Tests are tests, right?!

Hi Scully,

The Enterolab stool test is not considered a tool to diagnose Celiac Disease. The Celiac Sprue Association, Celiac Disease Foundation and the Gluten Intollerant Group does not recognize the stool test as a means to diagnose at this time. It is not the same standard serologic blood panel that a MD would order:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Coupled with your stool test and a positive dietary response, you doctor may diagnose you with a gluten sensitivity, but it cannot tell you if you have Celiac Disease.

I just noticed that you said that your blood work was positive. If you are referring to the above tests, then yes, you do have Celiac Disease. Positive blood work is a diagnosis in itself.

[Guest scully]

Hmmm.....Then why do a lot of people on this forum use the Enterolab tests as a diagnostic tool?

I am confused. There are a lot of people here who really trust Enterolab as it helps them find answers, which is why I plunked down the money.

I was negative for the celiac disease blood work, but I was tested 5 years ago. They did not repeat the blood work before my biopsy last month. I meant the Enterolab tests were positive, I mistyped. Sorry for the confusion.

I guess I was so excited to get the positive results from Enterolab, as I was really upset that my doctor didn't seem to believe that I could do better from a gluten-free diet without having sprue. I told them that, with all due respect, I know for a fact that one does not have to have full-blown celiac disease in order to do better on a gluten-free diet, but biopsies don't pick up on gluten sensitivity.

I don't know.....how should I take these results, then? Should I disregard them? I hate to have spent almost $400 if these tests are bogus.

[Lisa]

Enterolabs told you what you already know. You're sensitive to gluten and the gluten free diet helps you.

Many here are very passionate about Enterolabs. You could do a search here and find more discussions.

[RollingAlong]

I think the Enterolab tests gave you some useful info.

1st, you have 2 gluten sensitivity genes and you don't seem to have any celiac genes. (Enterolab genes tests aren't complete, they only do the beta units.)

2nd, DQ5 is one of the genes that is loosely associated with mood and neurological issues related to gluten. (I don't follow the lit on DQ7, but it is probably interesting in its own right)

3rd, those genes have been "activated", you are - as you suspected - gluten intolerant and the diet is a great idea for you. Check out that malabsorption score!

The problem is that the diet works for two groups - and those groups overlap in this forum. Statistically, gluten intolerants far outnumber celiacs, so you see a lot of discussion about the Enterolab tests. Here's a website that explores the issues these tests raise a bit more Open Original Shared Link

>my doctor didn't seem to believe that I could do better from a gluten-free diet without having sprue. >I told them that, with all due respect, I know for a fact that one does not have to have full-blown >celiac disease in order to do better on a gluten-free diet, but biopsies don't pick up on gluten >sensitivity.

You are SO RIGHT!

Have you noticed any mood/mental issues? Just wondering...

[Mother of Jibril]

HLA-DQB1 Molecular analysis, Allele 1 0301

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)

IMO, this is where you get your money's worth from Enterolab; the results on the genetic test are just as reliable as any other lab. A LOT of physical and mental health problems in my extended family can be traced back to the DQ genes.

DQ5 puts you at risk for IBS, Chron's disease, and Guillain-Barre syndrome.

DQ7 puts you at risk for gluten intolerance (some DQ7s are diagnosed celiacs), casein intolerance, lupus, rheumatoid arthritis, pollen and grass allergies, narcolepsy, thyroid disorders, fungal sinusitis, gingivitis, and thrombocytopenia (a clotting disorder).

I also have DQ7... my dad and I both have autoimmune hypothyroidism, pollen allergies, and my son has a severe intolerance to casein. One of my dad's sisters has lupus.

[Guest scully]

GOD, you guys have raised some REALLY interesting points.

Regarding the mood issues, I tend towards a lot of quick irritability, 'sweating the small stuff'. It really has always made me upset that I am like that, because it is very unpleasant and unnecessary. I do feel a constant sense of frustration or mental uncomfortableness most days, almost like a gnawing feeling inside. Weird. I am very, VERY EASILY OVERWHELMED and stressed out, too. I have to really watch my stress. My parents call me Type A-plus. I've been on some sort of low-dose antidepressant since 1994. Go figure.

WOW---regarding the allergy issues with that particular gene, I have severe allergies to pollen, mold, dust mites, grasses, weeds, animals, perfumes, etc. I take three allergy shots once a month (I'm on "maintenance" now--it used to be once a WEEK!). Plus that, I usually have to play "musical antihistamines" every two years or so, I think I get resistant to it and it stops working so I have to switch. My allergies are really quite miserable and most of the year I suffer. Sinus congestion, sinus headaches, hives, itchy nose, eyes, throat, the whole lot. At least once, if not twice a year I have to go on a short course of Prednisone. Lovely!

Oh---also regarding that gene, I was diagnosed as having IBS in 2004 after an EGD and colonoscopy. The IBS was probably due to the gluten, perhaps. AND, dairy. I have to limit my dairy. Basically, I can have a piece or two of cheese a few times a week, or a little bit on a salad, or a little bit on a pizza. And only once a day. Any more than that and....not so much. What was even funnier was my casein report---I forgot to include it.

Fecal anti-casein (cow's milk) IgA antibody 36 Units (Normal Range <10 Units)

[Mother of Jibril]

That's how I felt when I got my genetic results too... it explains SO much!

Have you ever considered giving dairy-free a try? It might reduce your sinus congestion. Also, some people with pollen and grass allergies are intolerant to related foods... pears, peaches, plums, berries, melons, citrus, etc... What happens is that your body mistakes those foods for pollen and generates a cross reaction. Try googling "oral allergy syndrome."

[ShayFL]

You did not waste your money. The results are valuable to YOU, but what I was saying is that they would likely not be valuable to your doctor.

I used Enterolab and it confirmed that I needed to be gluten-free as well. And going gluten-free relieved a lot of my problems. So I trust Enterolab results.

[ravenwoodglass]

Your doctor may eventually see the turn around in your health and acknowledge that you are at least gluten intolerant. It seems odd that this might help but if you husband can go with you to your next appointment and talk to the doctor about the changes he has seen that could also be very helpful. Sometimes frankly doctors don't seem to believe women and we are told much more often that stuff is 'in our head'.

As to the negative bloods and biopsy, some of us will not show up in blood work or we will show as a positive but only a couple points into the positive range so doctors will consider it negative. You have 22 ft of small intestine and at times damage can be patchy and can be missed. A postive result on bloods and biopsy are positive but negatives are never for sure negative.

You should eliminate all dairy. There is a chance you will be able to add it back in after a bit and you can challenge it after you are totally healed. There are a number of good nondairy milk substitutes, but don't go with Rice Dream.

I hope you start to feel better soon.

[coldnight]

This is a little off-topic, but when I was diagnosed with IBS about 9-10 years ago, I found a place called Great Smokies Laboratories, or something like that. They did a stool test for bacterial overgrowth. Mine actually came back pretty close to normal, but it had some information in that I thought would be pertinent to my GI at the time. He glanced at it, and tossed it aside, like it meant nothing.

So, skip ahead to 2008, and my last GI was actually suggesting I get a Great Smokies Lab test to see if they can find anything.

So, my point is, just like them, enterolab may just need to be proven over time, maybe in 5-6 years, doctors will be referring their patients there, the medical community is always slow to adapt.

And yes, I agree with ravenwoodglass, women and teenages, they do not listen to. It sounds lame, but bring a parent/husband if you are a teenager/wife, because it will help. Not ALL doctors are like that, but I've met quite a few who did not really value the opinions of women or young people. Plus, when you are both there, it's 2 on 1, some (again not all) doctors are a little bullyish in their manner and don't like to listen. It's a little hard for them to do this when they have 2-3 people staring at them. (One time I brought my whole family, all 6 of us, that was a meek doctor.)

[Lisa16]

I have the DQ7 and am a diagnosed celiac (positive bloodwork, postive DH biopsy and postivie response to gluten-free diet.) I also carry the DQ6 gene.

The DQ7 is a gene associated with narcolepsy and nerve problems. And in addition, it appears to confer some protection against mad cow disease. Go figure.

Lisa

[Lisa]

And in addition, it appears to confer some protection against mad cow disease. Go figure.

Lisa

I guess you have to be careful who you hang out with.

[RollingAlong]

Would baseline blood tests possibly be useful for somebody like Scully, to see how things are going with diet? Might be more convenient, long run, than Enterolab.

[leadmeastray88]

Would baseline blood tests possibly be useful for somebody like Scully, to see how things are going with diet? Might be more convenient, long run, than Enterolab.

I don't see why that would be necessary, considering her bloodwork was negative.

There's nothing to base her 'progress' on.

[Guest scully]

The only thing is, I was blood tested 5 years ago. Could I have had a negative test then and a positive one now? But then again I don't have the celiac genes, only the gluten sensitive ones.

[leadmeastray88]

The only thing is, I was blood tested 5 years ago. Could I have had a negative test then and a positive one now? But then again I don't have the celiac genes, only the gluten sensitive ones.

It's very possible that you could get positive results, IF you were eating gluten.

You've been gluten free for awhile now, long enough to make the results inaccurate. If you want to re-do the bloodwork you'll need to go back on gluten for a long time to re-create the damage that has been repaired already. The good news is that you haven't been gluten-free for too long, so I don't think it's too late.

..And you don't necessarily need to have the genes to be Celiac. There are people here who have been clinically diagnosed with blood/biopsy and don't have the 'typical' genes. Although it is more common to see the Celiac genes in patients with Celiac.

[Guest scully]

Do you think it is worth it to repeat the total IgA panel and suffer through the gluten challenge?

I am not sure what to do. I have been thinking about repeating the blood work, it was done 5 years ago and may not be valid any more.

[Rachel--24]

Scully,

Since you've been on the diet have your symptoms resolved? If your health problems are resolved wouldnt you just want to stay on the diet and continue to feel well?

Personally, I think the chances of your Celiac tests coming back positive are pretty slim. Its only a very small percentage of Celiac's who test positive without carrying the main genes.

If you are feeling good now....why go backwards?

If you had not already started the diet I would recommend that you have all of the proper Celiac tests run.. However, if you know that gluten is making you sick....and you've resolved your symptoms....I'm not sure what benefit you would have by doing a gluten challenge at this point.

If the tests come back negative...but you know that gluten makes you sick...wouldnt you just continue with the diet?

If you're still having unresolved health issues while following the diet....you may want to consider looking into other possibilities for those issues. I would recommend that you stay on the diet if your health has improved.

To answer your question I dont think its worth it to suffer through the gluten challenge. If you are suffering while consuming gluten....then you probably shouldnt be eating it...Celiac or no Celiac.

[surrender]

Scully,

I agree with Rachel. If your biopsy came back negative, your blood work almost certainly would come back negative. Even if it came back positive, does it change your decisions?

Which leads me to a bigger issue which is touched upon here...we only have a small view of the big picture of celiac disease. There may be more genes involved that have yet to be discovered. Enterolab may finally prove to be cutting edge and the leader in antibody testing with other labs following suit. There is still much to be learned.

Trust your gut...literally. If you feel better, go with the diet. Who cares whether your doctor believes you or not. It doesn't matter whether you have "the genes" or not. It doesn't matter whether you are "sensitive" or "celiac". The result of the diet is that you feel better. You, yourself, know what is best for you. Trust your gut.

I've found that I've had to blaze a trail with this disease. My family, friends, doctors have not known a thing and I've had to do the teaching...I've spent days researching and I can't say my doctor has done the same. Sometimes the patient knows more. Sometimes trusting experience is wiser than trusting knowledge, especially when that knowledge is contained in a very narrow box.

Blessings to you!

Rolling Along - Tx! for the link to glutensensitivity.net. What a great site, and I love the "7 viewpoints" chart they have...it gives such a clear understanding of where the medical community stands on celiac issues.