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Enterolab


concernedlady

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PETES Newbie

I tested positive at enterolab. I just saw Dr. Green in NYC to get his opinion. He took blood but did tell me that he feels enterolab is quzckery. Not sure what to believe. I have tested negative for sprue through conventional testing in the past. I will get the results in about a week. I tend to agree with Dr. Green as enterolab doesn't make much sense to me . I see everyone I know eat gluten all day with no problem but according to Dr. Fines' testing over 40 percent of the world can't tolerate gluten. This obviously isnt the case. Any opinions?

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Guest Haypaula

Hi, I personally think that the world has HUGE health issues....obesity, diabetes, cancer, depression, ADHD, impotence,allergies just to name a few.....is everyone eating gluten with no problems...you may want to rethink that statement! ;) Paula

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plantime Contributor

I don't think everyone is eating gluten with no problems. I think it is misdiagnosed, and they are just being treated for the wrong things. I have a friend being treated for respiratory allergies, bipolar disorder, and overweight. He has a multitude of other problems, all of which I see listed on the boards as symptoms of gluten intolerance. His mother (he is a teen) refuses to believe that food can cause anything like what he has. I think more people have a gluten problem than doctors are identifying.

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KayJay Enthusiast

PLEASE HELP ME!!! I am so confused here are my results.

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 29 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range

<10 Units)

Stool Test for Small Intestinal Malabsorption

Microscopic Fecal Fat Score: 554 Units (Normal Range < 300

Units)

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody 20 Units (Normal Range <10

Units)

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0501, 0502

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

Interpretation: Analysis of this stool sample indicates you have

dietary

gluten sensitivity, resulting in an associated autoimmune reaction to

the

human enzyme tissue transglutaminase and an increased amount of dietary

fat

in the stool likely due to small intestinal malabsorption/damage. You

also

have antibodies to the main cow's milk protein, casein, and hence, you

are

immunologically sensitive to these foods.

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

(HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have a copy of

a

gene that predisposes to gluten sensitivity (HLA-DQ1 involving the

DQB1*0501).

---I am sorry this is so long and I have tried to read others results but I am so confused. I know I have gluten sensitve but not sure about the gene thing and the milk sensitive. I don't know what casein is. I am only just getting used to gluten free so now I don't know what to eat. I don't know if I have celiac or just gluten sensitive.

Thank you!!

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Tasha2004 Contributor

Dr. Fine suggests that I probably have at least Gluten Sensitivity at this point due to a postive Ig A test. That is the only thing that has been postive, the Ttg and others were not.

I'm wondering if there is any info on whether this turns into Celiac, or is there a sub-category for this out in the medical world?

Given my diabetes, Thyroid disease and family member with Celiac, I know it is likely to go that way.

I would doubt there would be anything showing on biopsy, but I am starting to get a lot of gas and tummy rumbling, so anything could be possible.

Anyway, what do people do who are in the in-between stage? Does it ever not go into full blown Celiac?

Any info would be great.

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plantime Contributor

I have gluten sensitivity. I have been reading about it, and believe that is a the beginning stage of celiac disease. I refuse to wait until it becomes fluu-blown celiacs. I am on a gluten-free diet for the rest of my life. I think that I have avoided most of the agony and illness that others have suffered, simply by the early diagnosis of the sensitivity.

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Guest Haypaula

Hi, I sent a specimen to Enterolab for myself and received results approx. 3 wks. ago...positive, positive, positive right down the line. I then took my 17 yr. old son and 10 yr. old daughter to a gastro in my area and requested testing. Both have had issues and I have the gene. My sons biopsy came back suggestive of celiac but the gastro doesnt want to say positive until he views blood results also which we are still waiting on...however, he did say that he feels that my son has celiac. My ten yr old went to see him last week and just had the bloods drawn since the doc didnt want to do an endoscopy with out first seeing if her cbc, b12 or celiac panel looked suspicious...well, 4 days after her visit she started breaking out in the derma. hep. that comes with celiac...never having had it before. Never any skin issues actually. I took her back to the gastro today to have a look see and he said that it was the derma. hep. that comes with celiac and she is now scheduled for an endoscopy on day after tomorrow and he feels that her blood results will support this step. My point with all of this is....I AM SO THANKFUL TO ENTEROLAB!!! How long might my children have gone on sick and I wouldnt have even known it. I do think that the results are accurate...proven by my children and after I have my third asymptomatic child tested I will schedule an endoscopy for myself just to have a look and make sure that nothing else is going on..the price I paid out of pocket to be tested was so worth it. thanks, Paula

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sc875 Newbie

Hi.

I have been found to have malabsorption (fecal stain with fat and starches). I've lost 15 pounds over the last few years and have low ferritin, BUN.

I had a complete workup for celiac including three antiboidies (anti-gluten, antitissue and antiendomysal) and a small bowel biopsy that was negative.

My doctor now thinks the malabsorption is due to adrenal exhaustion and candida.

However, I am wonderinf if it worth doing the enterlab test. My only worry (besides cost) is that ther may be a high rate of false positives.

I would love to hear from others that have done the test.

Thank You

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sc875 Newbie

Hi.

I have been found to have malabsorption (fecal stain with fat and starches). I've lost 15 pounds over the last few years and have low ferritin, BUN.

I had a complete workup for celiac including three antiboidies (anti-gluten, antitissue and antiendomysal) and a small bowel biopsy that was negative.

My doctor now thinks the malabsorption is due to adrenal exhaustion and candida.

However, I am wonderinf if it worth doing the enterlab test. My only worry (besides cost) is that ther may be a high rate of false positives.

I would love to hear from others that have done the test.

Thank You

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Guest jhmom

To my knowledge Enterolab does not have false positive results. Their tests are more sensitive than blood and more accurate.

This is the route I took and received a positive dx and immediately started a gluten-free diet and could see the improvement in my health within a few days. Through my GI doc all of my results (blood and biopsy) came back negative too.

Hope this helps in making your decision. :D

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Guest jhmom

Hi Paula - That is awesome to hear. I am glad that your children (and mine) did not have to suffer as some of us on this message board have for years and years.

After all the testing I endured I decided not to put my daughter through it all and had her tested through Enterolab too, her test was positive and after going gluten-free I don't hear "my tummy hurts" all the time and the nurse from her school does not call me to tell me that she is in the clinic complaining of her stomach hurting! The $100.00 I spent on the test was WELL worth it!

I am very happy for you and your kids! :D

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plantime Contributor

Stacie, I agree: your child's well-being is so worth the money you spent! You also got peace of mind, which is priceless!

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Sandi Explorer

HI

My name is Sandi

And I am 46 and have been in pain and all for 6 years I have been going to the Drs. but they say its my weight, yes I am over weight (275) but I am not eating like I look like I would be eating.

I have such pain in my lower intestines and the gas that doesn't want to come out but run the laps around my intestines so that IM in pain. Who wants to eat when you know your going to be in pain. I am very, very anemic and iron defc. My legs are that tingling mess at night. constipation, nausea, bloating, fatigue, weakness, irritability, inability to concentrate, abdominal distention, my teeth are a mess even thought I take care of them, I can go on but you get the idea.

I have gone to Drs. again and they run the basic blood work and blame my weight and say "take Iron Pills." IM a widow with 3 kids, I have to be able to function here for them. At first I thought I had IBS and it was better for a while. Then I tried Atkins

and I got to feeling normal, what a pleasure it was not to be in pain and to sleep somewhat. and not feel like a wet wash rag. I went off the diet and the systems came back worse, nothing I did make me feel better so I was in pain all day and night. I did some research found Celiac and said maybe, I called my Dr. and he wont run any tests, saying you guessed it weight and what ever.

SO I put my self on the Gluten free diet and with in a day I was feeling better, 2 weeks IM almost normal, I have the bloating if I slip up or didn't know I ate gluten, I know, I have a way to go to learn what to eat and all, But I want to know how important is it without a confirmed DX from a dr.

What about this Lab, Money is so tight but I would try to do it if I thought the results were true results and would Drs. believe those results? Open Original Shared Link

Is this worth it? Any other advice?

IM sorry this is so long and I don't mean to sound like I am whining but I cant take this pain any more.

thank you sooo much

sandi

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plantime Contributor

My doctor accepted the diet alone as proof of intolerance. I understand from other posts that Enterolab is quite accurate, but your doctor might not accept the test. You have to be consuming gluten to get a positive result on bloodtests, and have severe damage for a positive biopsy. Many people feel so much better on the gluten-free diet, that they do not want to go back on gluten just for testing. I am not sure how important a dx is, I guess it just depends on personal preference!

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feedjake92 Rookie

Do you need a doctor's order for these tests?

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plantime Contributor

No. You can go to www.enterolab.com and order the tests yourself. You have to pay for them when you order them, and they are fairly expensive. If you can get your doctor to order them, maybe your insurance will pay part of it. No guarantees, though. You can always file with your insurance yourself, I guess. I have never tried to, so I don't know how it would work.

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  • 3 weeks later...
Phoebe2 Newbie

Hi,

gastro ordered a stool test nad found WBC white blood cells which pointed to inflamation to somewhere in my intestinal tract.

he wants to to a camera down the throat but all my cramps are near my belly button.

i am tired of being put under and would like a test.. ive checked helthcheckusa.com and i dont understand the test they do and i went to www.enterolab.com but i just dont know which test to try. I have very little money and want to make sure i get a definitive answer if i ahve celiac disease... do celiac's usually show inflamation?

i would just rather take a blood test than have any more surgical procedures!!

could someone please help me pick out on that is the cheapest yet best indicator wether i have this disease or not.. im very confused

thanks

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YankeeDB Contributor

I'm no expert but based on my reading, if you want to have a blood test for celiac disease, ask for a "anti-tissue transglutamase igA" test. If it is negative, ask to be tested for "total serum igA" to see if you are igA deficient which means you would be likely to get a false negative on the first test. If you are igA deficient (not super likely, but possible) then you will need to delve deeper. I think this is the way to go if your insurance will cover the test.

If not, go to enterolab and consult with them about which test is best for you. I have heard they are very helpful there. Explain financial concerns as well.

Unfortunately, with this disease, informing yourself as much as possible and learning to be less reliant on medical professionals seems to be necessary at this point in time.

Best wishes to you!

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taneil Apprentice

I was just tested by Enterolab. I received my results in about four weeks. For $99 you can have the Gluten Sensitivity Stool test and this will tell you if you are senstive to gluten and thus need to go gluten-free. IF you can spend $169 then you can get the Gluten Sensitivity Stool Panel which will also tell you if you have malabsorption problems, meaning your intestines are damaged. The Complete Stool Panel which costs $229 also includes Tissue Transglutaminase test, but the way I understand it, if you have sensitivity to gluten you need to go gluten-free so the Tissue Transglutaminase is just another test to see if you are also having the Autoimmune reaction to gluten also. Both mean the same thing...gluten-free for life so the sensivity test I would think would tell you enough (but that is my opinion) :) .

I was able to do the complete stool test and the gene test which said that I have both of the Genes that predispose one to Gluten Sensitivity. This means that I don't have to get the gene test for my children because they have one of the genes from me no matter what.

Hope this helps. I have e-mailed Enterolab multiple times with questions and Dr. Fine is very prompt in responding and very kind and informative.

Not that this helps up front costs, but if insurance won't pay for the tests, you may be able to write part of the cost of the tests off on your taxes.

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gf4life Enthusiast
Not that this helps up front costs, but if insurance won't pay for the tests, you may be able to write part of the cost of the tests off on your taxes.

Don't count on being able to get a deduction for this. You have to have more than 7.5% of your income as medical enpenses and then they only deduct the portion over 7.5%. My family of 5 never even came close to the 7.5% even though we have a lot of doctor copays, medication copays, dental bills, eyeglass/contacts/vision bills, and the Enterolab testing at about $350.

I wasn't even sure I wanted to risk the Enterolab bill as a write off, since it says that lab tests are deductible if ordered by your doctor. It was the if ordered by your doctor part that got me. Anyhow, we didn't meet the 7.5%, even if we tried to add in the cost of gluten-free foods we wouldn't have qualified. And I am not sure the Enterolab diagnosis would count for tax purposes to be able to deduct the cost difference of the gluten-free foods, anyhow.

Regardless of whether you are able to get a tax break, I do highly recommend Enterolab for their diagnostic purposes. I would ask Dr. Fine what test he would recommend if you were only able to afford one.

God bless,

Mariann

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Tasha2004 Contributor

I did this today. Wrote him and asked his opinion. I cant afford much, but I sure would like to know why my stomach is rumbling.

And with a high IgA, I need to see what else he finds.

Just not sure what to purchase test wise.

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cornflake girl Newbie

I want to have my kids tested through Enterolab as a preventative measure because my results came back positive (my kids don't show symptoms). I carry one copy of the gene that predisposes to gluten sensitivity and I am reacting to gluten and casein. I'm looking to spend as little as possible and so was wondering if the gene test is necessary for my kids? I mean, if I have one copy of the gene and I have antibodies to gluten, did they get a copy of the gene from me and they should be gluten free, too? Maybe I don't even need to have them tested? My husband is mexican and so is statistically less likely to be affected. Does that play into this at all? I am so confused I hope someone can help. Can you tell that I didn't do very well in biology?

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taneil Apprentice

cornflake girl, The gene test is and isn't important. Your children have a 50/50 chance of having the gene because you have one of them. Thus each of your eggs have half of your DNA. So half of your eggs have the gene and the other half do not. So depending on which eggs where fertilized determines if your children have the gene. (That is unless you husband also has a gene.)

I personally have two of the genes and therefore all my children will have atleast one copy of the gene. So I will not get them gene tested. (Talk about bad genetics :D )

Your children's stool tests could come back negative for Gluten Sensitivity, but if they have the gene then it could be triggered at anytime. Thus if you get the gene test for them. Then you can know if there results come back negative what the chances are that they may be become gluten senstive later in life.

Example:

Child one's results come back negative for gluten sensitivity but they have one gene...they at some point could become gluten senstive.

Child two's results come back negative for gluten senstivity and they do not have the gene...they are not likely to ever become sensitive to gluten.

The gene test is expensive, but it could be good just to know so you don't have to worry if they are or aren't going to become gluten sensitive at some point. If they have the gene you can be aware and ready for problems. And if they don't have it then you don't have to worry about it.

Hope this helps...

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Chantalle Rookie

Hi all - I checked out the site for Enterolab and the price list. I think the full test with gene test is something in the range of $350.00 - that would be American so being I'm Canadian and our dollar is worth MUCH less than yours right now (!!!), that would be big bucks for me. I called the local chapter for celiac association and the woman I talked to told me she isn't aware of stool tests available here although she knows that there were some looking for funding from the government to do it. I told her about Dr.Fine and Enterolab and she was interested to find out about that.

She also told me that even though my bloodwork was negative, that when I see the gastroenterologist, I should be sure to get the proper bloodwork done again and he may do a biopsy as well. Also told me to make sure I DO NOT change my diet right now and go gluten free as it will mess up any tests. She says that since my son has severe acid reflux disease since age 10, that he should be getting bloodwork done at least too.

I still haven't heard from the gastro's office yet and no doubt I won't get in until sometime in the summer (takes forever to see specialists). In the meantime I'm watching my lactose and taking lactaid to see if symptoms remain after I have the lactose intolerance in check.

Chantalle

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Guest jhmom

Hi Chantalle:

I was dx through Enterolab and price was an issue for me too so I ordered the "gluten sensitivity" test which if memory serves me correctly was around $120.00 but like you said I am not sure if they ship to Canada, I am sure that info would be on their website.

It is correct if you are going to have blood-work done you will need to remain on a regular diet and yes if your son is having those problems I would have him checked too.

I am sure you have read a lot of stories about people here that have been tested through blood-work and biopsy and all their test came back negative and they still have Gluten Sensitivity (myself included). My suggestion would be: let the doctors run the test and no matter what the results are, try the gluten-free diet for a couple of months, if you show an improvement then you have Gluten Sensitivity.

Most doctors will tell you that it takes time for a disease to show up in the blood or to damage the villi and most of them will accept an improvement on the diet as a test/diagnosis.

I hope you feel better soon!

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