Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Enterolab...legit?


linz7997

Recommended Posts

linz7997 Explorer

so i work in a diagnostics lab...and i know its illegal per CLIA and I think FDA regulations for a patient to order their own tests w/ out going through a Dr. first. I was just wondering how Enterolab can do this...are they regulated by government? I am sure they are great but I just want to make sure I make an informed decision before I drop $369 on a test...ya know!!?!?!?!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I don't know the laws, could it be because you are getting consultation from the doc who runs it?

I was very happy with their service.

AndreaB Contributor

I don't know, but Carla sounds like she's on the nose with her thought.

I do know I've read that some doctors do use them, and other doctors will take the results of people's tests by them and accept it as diagnosis.

I am also very happy with them and Dr. Fine does/has written up the analysis info for us and is available for questions as well.

mmaccartney Explorer
so i work in a diagnostics lab...and i know its illegal per CLIA and I think FDA regulations for a patient to order their own tests w/ out going through a Dr. first.

Wow, I had no idea ordering your own tests would be illegal. Seems strange that my insurance company would pay for this type of test then, but it wouldn't be the first strange thing they've done. Seems odd for the gov't to restrict commerce like that.

After looking briefly, are you sure about the illegal status?

Open Original Shared Link

“Direct access testing” (DAT) is generally defined as consumer (as opposed to physician) initiated testing of human specimens. DAT is also known as "direct-to-consumer" or "patient-authorized" testing. Some states do not allow for DAT. Where DAT is permitted, it is commonly ordered by an individual without a prior consultation with a physician or a physician’s request for testing.

it seems that IF the state allows it patients can order their own tests. Enterolab is in Texas where DAT seems to be allowed. It also seems that the lab must be regulated by CLIA regardless.

More: Open Original Shared Link

More: Open Original Shared Link

I didn't see them on the list of violaters which could be a positive.

I used Enterolab for me, and both my children and am quite happy with the results. The results also line up well with what I found through food challenges as well.

linz7997 Explorer

thanks for that!!! maybe we cant test those sp. here in Indiana but they can there??? who knows. i may try it. thanks again!!!

Nancym Enthusiast

This information is cleverly hidden on the front page of their web site:

Open Original Shared Link

EnteroLab is registered with the U.S. Government's Department of Health and Human Services department as part of the Clinical Laboratory Improvement Amendments (CLIA). This agency oversees clinical laboratory standards and quality. We have also opted for (at our own expense) third-party accreditation from COLA, a non-profit national laboratory accreditation organization. EnteroLab passed this accreditation inspection in 2001 and re-accreditation in 2003 and 2005 with the highest standards. COLA accreditation is given only to laboratories that apply rigid standards of quality in day-to-day operations and pass a rigorous on-site laboratory survey. COLA is approved by the federal government and sponsored by the American Medical Association, the American College of Physicians-American Society of Internal Medicine, the American Academy of Family Physicians, the College of American Pathologists, and the American Osteopathic Association. Top
Mayflowers Contributor
This information is cleverly hidden on the front page of their web site:

Open Original Shared Link

I'm goin' in. I ordered the complete panel. (gulp) :( I hope it's worth it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mmaccartney Explorer
I'm goin' in. I ordered the complete panel. (gulp) :( I hope it's worth it.

I found it to be well worth it.

I "knew" I was at least gluten intolerant.

I thought I was lactose intolerant.

My biopsies all came back negative; my bloodwork only showed a "slightly positive IgA"

My tests showed not only positive IgA, but also positive TTG. Pos ttg

My casein test showed that I was casein intolerant, not lactose. (This was a bummer, lactose intolerance can go away, but not casein)

My genetic test showed a celiac gene, and a non-celiac gluten intolernace gene.

Knowing all of this, I knew I had to have my children tested.

I suspected one of my children had celiac as well, and in fact we had them on a gluten-free diet too.

Their bloodwork came back negative, except one had a positive IgG test. The pediatric GI wanted to get a biopsy from him; we didn't want that (yet).

Well, their tests all came back negative for gluten and casein, except the genetics. They were both lucky enough to get the dq2 gene from me, and each got a gluten intolerant gene from mom too. Lucky enough they don't have active celiac.

So, in the end Enterolab gave me solid confirmation of what I thought was going on. They gave me more information then I had in regards to the casein intolerance. They told me that I had the genes, as do my children though they aren't active yet. I would not have this level of information from traditional testing methods; and I would never have let them biopsy my children (at that point; had they been in really bad shape, yes I would have).

At the end of the day my insurance is covering 80% of it too!

debbiewil Rookie

It depends on the state. California has some specific legal requirements for ordering tests, and New York flatly forbids certain tests to be ordered without a physician, but it really depends on the state - not federal laws.

Debbie

rinne Apprentice

I'm wondering if any Canadians have done this testing, anyone? Or if there is somewhere in Canada to have this done?

linz7997 Explorer

so here is my question....if you have been tested and know you are gluten sensitive/allergic...what is the point of having the genetic testing done?? dont you then have to assume you have the gene??

Nancym Enthusiast
so here is my question....if you have been tested and know you are gluten sensitive/allergic...what is the point of having the genetic testing done?? dont you then have to assume you have the gene??

The genetic info is interesting and might correlate to your symptoms. For instance, the 0501 gene seems to be associated with neurological effects of gluten sensitivity. You can always google your specific genes and read up!

AndreaB Contributor
so here is my question....if you have been tested and know you are gluten sensitive/allergic...what is the point of having the genetic testing done?? dont you then have to assume you have the gene??

Also if you have just an allergy it may get better over time and you would be able to consume some products again. With an intolerance/sensitivity you can't. I found out I was allergic to the gluten and some gluten products and with enterolab found out that I was also intolerant to all gluten. My allergy tests didn't give me the whole picture since I didn't register allergic to oats and barley and had still been eating those. The gene testing was to know what genes I had, I happen to have one of each as does my daughter. My husband and son have 2 celiac predisposing genes.

Mayflowers Contributor
My genetic test showed a celiac gene, and a non-celiac gluten intolernace gene.

Very interesting! So if you have a celiac gene, Entrolab can tell if it's active and means you have celiac disease? I don't understand. I hope they explain the results when I get them so I'm not clueless.

AndreaB Contributor

Mayflowers,

They can't tell you whether you have celiac, only whether you have an active gluten intolerance. They do catch the disease earlier than blood so the severity shouldn't be as bad in either case. As far as I understand, those with gluten sensitive genes can't get celiac per say, but sometimes can be just as bad as celiac. Isn't celiac linked with other autoimmune diseases? That may be the only difference between celiac and gluten intolerance.

Mayflowers Contributor
Mayflowers,

They can't tell you whether you have celiac, only whether you have an active gluten intolerance. They do catch the disease earlier than blood so the severity shouldn't be as bad in either case. As far as I understand, those with gluten sensitive genes can't get celiac per say, but sometimes can be just as bad as celiac. Isn't celiac linked with other autoimmune diseases? That may be the only difference between celiac and gluten intolerance.

This is from the Enterolab website

"Gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity"

Wouldn't the autoimmune reaction be celiac?

mle-ii Explorer
This is from the Enterolab website

"Gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity"

Wouldn't the autoimmune reaction be celiac?

Depends on who you ask. I haven't been diagnosed as having celiac, though I have the gene for it. As well as having tested postitive for gluten intolerance via Enterolab. I also have Microscopic Colitis (Lymphocytic Colitis) which from everything I've read reads to me to be Celiac, but in a different part of the intestines.

So I have an autoimmune reaction but supposedly don't have celiac.

I should get tested again, but I need to consume gluten for some time and there's no way I'm going back to the symptoms and problems of that again.

AndreaB Contributor

Can autoimmune diseases or reactions improve with a gluten-free diet?

Clearly most immune-related damage in the intestine heals with a gluten-free diet. Now it appears from early research of this question that many if not all autoimmune diseases such as autoimmune thyroid disease, psoriasis, alopecia, arthritis, lupus, hepatitis, diabetes, among others, and autism improve with a gluten-free diet. Because the immune reactions to cow's milk proteins also are immune and autoimmune stimulating, new research is focusing on the benefits of what has come to be called a gluten-free/casein-free diet, which likely is more beneficial in this regard than a gluten-free diet alone (see below). The less immune-stimulating the diet, the less fuel on which the immune fire has to burn. Other immune-stimulating foods include other grains, legumes (including soy), dietary yeast, and especially for arthritic patients, nightshades (tomatoes, potatoes, egg plant, and hot red peppers).

Don't know if this really answers your question but it is on the enterolab site.

Mayflowers Contributor

So what's left to eat? :lol:

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.