Enterolab Results

[zoomers180]

Hi Everybody -

I received my lab results from Enterolab. It was extremely detailed and comprehensive. I was very impressed.

They were able to find 3 genes through DNA testing that indicated I had Celiac Disease. This was also confirmed through antibody testing. Through a microscopic fecal fat score, they were able to determine that I did not have any malabsorption problems and no intestinal damage. I was glad to hear that!

The test also confirmed what I already had been told by an allergist...that I was milk casein sensitive. Obviously, this means I am for sure, joining the gluten-free ranks, for life! So, you are STUCK WITH ME, PEOPLE! Ha Ha

Here was an interesting part: "If you have one gluten sensitive gene, then your offspring have a 50% chance of receiving the gene from you, and at least one of your parents passed it to you. Having two copies of a gluten sensitive or celiac gene, means that each of your parents, and all of your children 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 or celiac disease may be more severe."

I called my 28 year old daughter, and as you can imagine I got a very sarcastic "GREAT". We both laughed. I will hit my 20 year old son with the happy news when he gets home tonight. The lab recommended that they both be tested. My daughter is also the mother of my two grand babies, a four year old boy and 5 month old baby girl.

I am anxious to now go and sit down with my doctor and show her the results. I just wanted to share this with you, as I know it involves new technology. Truly, the report was very in depth, yet clear to read. The elevations (or lack thereof) in the numbers were easy to decipher.

I would highly recommend going this route. Now I know some of you may not agree with me, but from what I learned, the small intestine biopsy (even though considered the Gold Standard), is a 50 year old test. This new technology catches the sensitivity (or celiac damage) before it causes intestinal damage. That is their whole point...why not catch it BEFORE there is damage to the intestine!! Makes sense to me! Also, I read quite a great article in support of it on the Clan Thompson website.

My heart, love and prayers go out to each of you. Hey guys...we are in this together!!

Hugs,

Carole

[it's isto, not logged in!]

Hi, Carole! And welcome to the ranks. Sorry to hear you are among the lifers here, but glad you know what is going on! Where do I get the info to order this testing? What is the cost? Does this mean I can have my 6 month old tested to know ahead of time if he has celiac or gluten sensitivity? Does health insurance cover this? (probably not!!! ). Any info you can give me would be greatly appreciated!

Thanks!

Danita (I am isto on this site, but did not take the time to log in)

[zoomers180]

Hi Danita -

How sweet of you to reply!!

Go to www.enterolab.com

That is where I started. As I mentioned in my post, I also read about it on the Clan Thompson site. In addition to that, I "googled it" by typing in Enterolab.

The test was $379. For a time here, that includes testing for milk protein allergy. They have been wonderful to work with. I had many questions and dialogued with a nurse named Phyllis for a week before I sent everything in. They said to expect 3 weeks for results. I got mine in 10 days!

As far as insurance goes, it's up to your insurer. Enterolab provided me with codes that I could ask Blue Cross about. They came up "not covered" in my plan, although I am still going to try and submit it. I had another stool/digestive test done last Spring through my doctor (I had had a nasty bacterial infection) and they were not covered either, yet BC reimbursed me. Also, if you have any kind of a med savings account, that would save you money by submitting it to them. The lab also said that if you can get your doctor to order the test, sometimes the insurance companies will cover it. It's a crap shoot (no pun intended! ha ha)

As far as your little one...yes...they give you complete instructions as to how to administer the test for a baby. Again, if you email them (I did even before ordering the test), they are great in offering guidance.

Good luck and please let me know if you proceed and how it goes! I am so relieved to finally because to put a name to this instead of "speculating"!

Carole

[aklap]

Hi Carole,

I am sorry to hear the news...but happy that you now know about it and can deal with it!!

Be prepared for some dismissal from your doc about these tests. Most of them call them a "scam" or "rip off"...that usually comes from the "un-enlightened"ones. Dr. Fine is on the cutting edge of diagnostic testing with this and not very well accepted by mainstream medical community...YET.

I wish you well in your GF Journey, it'll be nice to travel the same road with you!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[zoomers180]

Thanks Al!

Believe it or not, my Doctor (a D.O.), who is not put off by some alternative types of medicine/testing, said it made "perfect sense"! Before I even got done explaining it fully, she interrupted and exclaimed, "So this is a very sensitive test. Excellent! Let's go for it!"

I already knew I had some kind of a problem, but this confirmed it for me.
People can say what they want, that doesn't put me off a bit. I KNOW from experience that there are answers outside of conventional medicine. Twice I have found that to be true.

One was through using natural hormone replacement when I was in my 40's. It restored my menstrual cycles when the "pills" no longer worked!

Another time was when I was told I had carpal tunnel and they wanted to cut my hand open. A friend pleaded with me to go see a local chiropractor. I did, he found nerve damage connected to my spine (NO CARPAL TUNNEL!) I went for about 10 visits, wore my brace and took it easy for awhile. It was so bad I could not even write, prior to his treatments.

This was 10 years ago and I have been fine since.

So?? People need to keep an open mind and say "nay" to the "nay-sayers". Doctors are not "God"...not in my book anyway

Carole

[aklap]

Hi Carole,

I agree...the Docs had no answer for me. After researching, I decided to go GF - I had nothing to loose!

I am glad you have one of those "enlightened" Docs heheheheheehe
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[CalGal]

Carole, do you know the "names" of the three genes Enterolab found? I'm interested, b/c my family has HLA DQ 6 and HLA DQ 7, which some countries believe are tied somehow to gluten intolerance. The US medical establishment seems to only officially recognize HLA DQ 2 and HLA DQ 8. Some drs believe other genes are involved, but some are very strict on only including the 2 most common genes. Like they have this condition all figured out!
Good health to you in your gf "treasure hunt"!!!

[CalGal]

I meant to say that my family has HLA DQ 6 and HLA DQ7, IN ADDITION to HLA DQ 2. The dr that ordered the testing didn't say what the 6 and 7 mean, or even why she ordered tests for them!

[zoomers180]

Hi Missie Cal Gal

Okay...here's the scoop. This is what the report said:

"HLA gene analysis reveals that you have a genotype containing the main gene that predisposes to gluten sensitivity AND celiac sprue: HLA-DQB1*0201 (HLA-DQ2) and/or HLA-DQBI*0302 (HLA-DQ8).

The other "gluten sensitive genes" (non-celiac) are any molecular type involving another HLA-DQB1*03 number (i.e., HLA-DQ3), or any HLA-DQB1*05 number, or HLA-DQB1*06 number (i.e., HLA-DQ1). " They went on to say that two copies of a gene indicated there was an even stronger predispositon. That's where they lost me, so I need to contact them with a hearty, "huh?"

The results went on to say that I had an "immune reaction to gliadin which resulted in triggering an autoimmune reaction." Celiac is an autoimmune disorder, as I'm sure you know.

Whew! I know this gets a little tricky to decipher! We need a "Cracking the Celiac Code" manual for this stuff, right? I don't know why they can't make it a little easier to understand, for the lay person. I had to sit down and take it apart very slowly to try and understand it all. I still have a couple of questions, but honestly, they are a great bunch of people and are eager to help you in any way they can.

Also, I wanted to share with you and anyone else reading this, that the stool analysis & gene analysis is not only performed by a PhD, but the interpretation of the results are done by Dr. Kenneth Fine (M.D.), himself. He is the founder of Enterolab and himself, gluten sensitive.

In reading the book Dangerous Grains, they mention this kind of testing on the horizon and Jax Peters also mentioned it as "promising" in her book, The Gluten Free Bible.

GO FOR IT! And let me know if I can help in any other way.

Carole

[zoomers180]

To Cal Gal -

I forgot to mention one more thing...

In pouring over these results yesterday I also learned that DR3, DQ2 and DQ 8 are the three genes specifically linked to celiac disease. I got this from the Celiac Sprue Association.

I also have HLA-DQB1*0602. I had no clue what that number was, so I googled it as HLA-DQB1*0602 + Celiac Disease and it came up as "gluten ataxia". That's gluten affecting you neurologically. Has something to do with your "gait" and/or "clumsiness".

Well, let me tell you...hubby had a good "guffaw" with that one! "No wonder your Dad always called you stumble bum!" Ha Ha At least we can still find humor in this adventure!

Carole

[CalGal]

My daughter and sister both had gluten ataxia before going gf. I have also heard that people with high IgG antibodies (in the Prometheus tests) are more likely to have neurological symptoms/problesm.
At the Stanford Celiac Conference on 10/08/05, Dr. Joseph Murray (from the Mayo Clinic in Minnesota) listed persons he would NOT recommend do a gluten challenge (in order to have a biopsy), and one category on the list was people who have had neurological involvement.

[zoomers180]

Isn't that something, though?

I told my doctor "flat out", after being GF for four weeks that "no way" was I going to put myself through a gluten challenge. She had suggested 4-6 weeks and then a small intestine biopsy.

Enterolab was the route for me. They gave me more clarification today on questions I had.

I think they are the best!

[Mommy2Ky]

HI there. I just have a few questions. First of all I have been very ill- dizzy weak etc.......for 7 months now. I have been told I have every thing in the book including nothing health related "its all in my head" haha. Anyway finaly found out it isnt. My thyroid is abnormal and I had a thyroid antibody test which showed high antibodies and my body is attacking my thyroid in otherwards. I have a 1year old baby and i cant go on like this anymore I am so sick and always think I will faint or collapse. Anyway my point is My mom DOES have celiac so now they are trying to send me for the endoscope?? I think that is what it is called. I am terrified to death of this and what if i have no intestinal damage yet because I am still young so maybe it hasnt hit there yet? What exactly is this testing? How do I go about asking for it or having it done? Maybe I could avoid the camera in my throat and tummy. I did have an antigliadan blood test but it was negative. I feel I know more about all this then my doctors do and I am the ones telling them what to do with me and they are pretty much fed up but if I didnt get on there cases they would leave me to be extremely weaker and weaker until I cant move or walk anymore. I am waiting for an appointment with a GI specialist but right now I have decided to go gluten free for a while because I cant take this sickness anymore. I am not sure it is what I have but my mom does and there is a reason for my thyroid to be shutting down and this could be it. Any advice would be nice I am so lost right now and scared. I dont have the energy anymore I can barely shower without wanting to pass out and they have me on a dose of thyroid meds but I have no idea if that is really what I need. PLease give me any info you can. THANKS IN ADVANCE!

[zoomers180]

Hi "Mommy" -

First of all...I am sending you a big hug. My heart goes out to you, big time, and I will be praying for you!

I have heard that the endoscope is painless, so try not to worry! I have a personal friend that has had it done several times. There are no nerve endings in the small intestine, from what I hear. I would have gone this route myself, but I was already gluten-free and had been for several weeks and I told my Dr. flat out...I was not willing to add that poison back into my diet. We sat down together and I showed her everything I had gotten off the internet regarding, Enterolab. She supported me 100%. I, too, had my blood test come back negative (2 1/2 yrs ago) but I got progressively more ill. I went back to my allergist this past spring and he thought that perhaps my system had not produced enough antibodies yet. He said, "Carole, just go off the gluten. You don't have to go through all that trouble of having an endoscopy. If it comes back positive, all they will tell you is to go home and go gluten-free, anyway! There is no medication for it. None of us needs to have it in our diet. Eliminate it and see how you feel. That will be your answer." And he was right. The only reason I went to Enterolab was because I wanted my children to be prepared in case they develop symptoms later on. And sure enough...the antibodies were there for Celiac.

I know they say the small intestine biopsy is the "Gold Standard", but it IS a 50 year old test. Enterolab is the name of the lab that I used and they are in Dallas. As I mentioned in another post, they are wonderful people. The cost is $379. You send them DNA samples from swabbing the inside of both cheeks and a stool sample. They tell you it can take 3 weeks. I got my results in ten days!

Please, please, please don't delay going gluten-free, especially since your Mom has Celiac Disease. This alone, I have found, had me feeling 80% better in a matter of days...literally. I, too, am on thyroid medication (Armour thyroid). I have been tested for it on and off, for years, including the subclinical iodine test...and it always came up negative....that is until my doctor detected it through Basal Thermometer readings. I have read that it is common to have a hypoactive thyroid and Celiac.

Anyway, back to Enterolab. There premise is, "Why wait until you have intestinal damage to see if you are gluten sensitive??" Their testing picks up the genes way before that happens. I have read many good things about Dr. Kenneth Fine, M.D. (the founder). Sometimes the medical community is "slow" to accept new thinking. DO NOT LET THAT DETER YOU! I may be wrong, but I suspect some gastro dr's. don't take a liking to what Enterolab does, because this would seriously cut into a chunk of their business, wouldn't it?? If you can at all afford it, go for it. Use is toward your med savings if you have that. Or scrimp somewhere else, if you can. Regardless...get off that gluten ASAP!

I am going in to my Dr. this week with my lab results and I will post her remarks when I get home.

In the meantime, you take care of yourself, get some rest and try not to worry about these darned tests. Anytime you need to "unload", I'll be here for you. You just holler, okay?

With love,

Carole

[Mommy2Ky]

Thank you so much for your advice. I have actually been gluten free for over a week and am not too much better but somewhat. I also mentioned my thyroid was shutting down so that could be why I am not healing as fast?? I am on thyroid meds to repair it but it takes a good 6 weeks to know if it is doing the deed. I am so scared I have some critical illness and have been not sleeping well and very stressed. I am so weak feeling like I am going to collapse or the life is being scked out of me. I get fuzzy head feeling also and just out of it at times. I do have tummy issues but not as severe as these others. What happened to you?? DId you have any of the ones I mentioned? Weakness? I feel like I am dying and I thought that maybe a gluten free diet would help but I guess it takes time. I am at my witts end and pretty scared. I have no where to go but wait and wait and hope I heal.I think the hospitals and doctors are fed up with me I have been at least 8 times to the ER in the last 6 months and they all dont seem to have the answers or they are all the wrong ones. Its like they dont believe me when I say I AM NOT WELL!!! We have determined it is my thyroid and I have some sort of autoimmune thing going on.