Enterolab Results

[MLB]

Here are my enterolab results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 58 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 28 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1279 Units (Normal Range <300 Units)

Fecal anti-casein (cow

[confused]

Well I would go Gluten-free Casein-free and see if you feel better. If after 6 weeks, you do not feel better, i would look into other issues that can make you gluten intolerant. Examples of that are lyme disease, mold or metal toxicity or candida.

What were your symptome that made you test threw enterolab.

paula

[scottyfeelsick]

I might not be of much help to you, because I am new to all of this myself, but I can tell you what I am dealing with right now. Other people might disagree with me, this is just my 2 cents.

About 2.5 months ago I had enterlab results almost identical to yours on all the tests, exept the gene test. I don't know what yours means, but I do know that I have one of the genes for celiac. Any way, I don't know how acurate the tests are, but I know that traditional doctors don't take it real serious. I have been gluten free for about 2.5 months and have been seeing an endocronologist for problems that might be related to gluten issues. Long story short, They sent me to a GI doc who then said "celiac? thats sounds likely, lets test for it" So now after 2.5 months of gluten-free(and finaly starting to feel a little better than I have in over a year) they want to do a biopsy, so I have to eat gluten for 4 weeks. I kinda thought that the enterolab results were the new great gluten test, so I just went gluten free and didn't think that my doctors might want to test me for it to make sure 100% that gluten was the thing causing all the problems in my body. If I would have known all this 2 months ago, I just would have kept eating gluten until I could get in to have a biopsy done. It would have a better chance of being acurate and I would not have wasted all this time. Now I am potentially going to make myself sick for 4 weeks, and then sick for another unknown amount of time after the test until my intestines heal again.(this is all of course if I actually do have celiac)

Remember, this is just my 2 cents, but I would say to keep eating gluten and get a biopsy, then go gluten free regardless of the results, and if you feel better then don't eat it, regardeless of the results. But now is your chance to have the "gold standard" test done and then you don't have to always be wondering about it. Also, if it is positive, all your doctors in the future will take it as fact that you have celiac, and treat you acordingly. I have heard that the biopsy is not that acurate either, but you don't have to take the results as 100% fact for your self. Its just that this is your chance to have it done, and after that then you can just go on what your body tells you regardless of any test results.

Many people will say that its pointless to get a biopsy, and I agree with them on alot of points, but for my personal situation, I am going to try to do it. This is why: My doctors want the test done, to know if gluten is behind all of my weird blood and gland problems. They want to know, so they can treat my other problems with the knowledge of what caused everything. And I need them to keep treating me. Some of my health problems need treatment (atleast temporarily) besides just being gluten free.

I don't know if I really know how to say what I mean, sorry, I am tired. But, also remember, I don't really know s#*t about s#*t, this is just a story of what I am currently dealing with these days. Please feel free to ask any other questions if this doesn't make sense to you.

[nora-n]

Hi I just wantede to mention that most of the gluten-senitive people(those without DQ2 or 8) fail to have positive biopsies, but they are just as sensitive to gluten as DQ2 or 8, and some are even more, like DQ1.

Now I thinkI remember that double DQ7 has been shown to be at higher risk to be celiac (menaing boipsy-proven) and there was mention of this in article on the celiac.com site.

https://www.celiac.com/articles/1046/1/Unde...ewey/Page1.html

nora

[nora-n]

Also, there is at least one article out there that celiacs can be DQ7:

Open Original Shared Link it is hidden in the middle somewhere. They say that the DQ7 molecule is very, very similar to the DQ8 molecule.

[MLB]

Thanks all. I'm definately not getting a biopsy. I'm pretty much done with the traditional medical system in dealing with my stomach issues. My naturopath doesn't believe in getting them done either. I don't really care if my family doctor "believes" I have celiac or GI or not. But that's just me, I've been trying to get my doctors to get to the bottom of my issues for 3 years and they just chalk it up to anxiety ( I'm a woman) or they tell me I need PPI's for the rest of my life (I'm in my 20's).

Nora - in regards to the gene testing, I thought I was a double DQ3? What does subtype 7, 7 mean? Does that mean I'm actually double DQ7?

[Ursa Major]

Good for you for believing your Enterolab results and your naturopathic doctor. Who cares if 'regular' MDs believe in Enterolab! They also believe that we have just IBS, or are depressed or anxious, rather than taking us seriously.

I am pretty much done with regular doctors as well. For 49 years I've had celiac disease symptoms, and apparently, it was all in my head all that time, from the age of three years onwards until I was 52, at which point I figured it out myself.

Now I have a ton of other health issues that could likely have been avoided if I would have been diagnosed earlier.

Scotty, if after eating gluten and making yourself ill again, your biopsy is negative (which is quite likely after eating gluten only for one month), will you then go back on the gluten-free diet, or keep eating gluten? Why did you pay for Enterolab when you would then dismiss it like that, believing your ignorant doctors? What a waste of money!

[nora-n]

Hi, DQ3 is DQ7 and DQ8 and DQ9. They are very similar.

DQ7, 8 and 9 are subtypes of DQ3.

Nomenclature keeps changing and older papers may use different nomenclature.

There might be some DQ3 that are not 7, 8 and 9 but I am not sure. Could be any other than 0301,0302 or 0303 in the beta chain.

There are charts at Open Original Shared Link and one on DR (which sometimes comes up in scientifid articles) Open Original Shared Link and an old one but useful at Open Original Shared Link

[scottyfeelsick]

Nora_n and Ursa Major, you are both very right and I agree with you both absolutally, that modern medicine has and continues to fail us, especially with issues such as this one. I think that getting a biopsy is NOT something people need to get at all. If you feel good gluten-free, that is the best diagnosis anybody could possibly get. You definataly do not need a label put on your symptoms to be healthy again. Especially when things like a biopsy have been proven to be not all that reliable. Nora_n, if you have no intentions of ever getting biopsy, then don't do it at all! If you don't plan on seeing a "traditional" doctor again, then I don't see any reason to ever get a biopsy, ever.

I see a naturalpathic doctor as well as a traditional endocronologist( I just wish they could work together). My naturopath had me do the enterolab tests, which I think are plenty reliable from what I have read. I am not dismissing those results by any means, but my endo won't seriously talk about the relationship between my hormone deficiency and gluten, without having a biopsy. And I know it might be nagative-but I don't know what else to do. I need my endo to keep being my doctor, because I am on hormone replacement(some of my levels were so low, he was suprised that I could even go to work, even sometimes.) I feel better off of gluten(I think), but I started hormone replacement right after I went gluten free, so he says thats why I just recently started feeling better. If I get real sick though, I think I will most likely just stop, i don't know, I feel like I am really between a rock and a hard place.

So, no, I would not want anybody to take a biopsy that didn't want to for sure, especially becuase that would also mean eating gluten longer. I was just trying to tell my current predicament. Just in case you thought someday that you might want to get one done, I thought I would tell my story, and how now I wish I just would have gotten it done a while ago(before I started to heal), no matter what the results, I at least would not be in this situation.

I hope maybe this explains me a little better, and remember, I don't know anything about any of this stuff, I am as much of newbie as one could possibly be. Just throwin my 2 cents in there. And I would definataly listen to what Ursa Major has to say, she has answered and helped me out alot on a couple of topics that I have started. good luck, scotty.

[scottyfeelsick]

MLB, I'm sorry, I just realized that I called you Nora_n. I am sorry, I am no good at chat rooms, I get everybodys names mixed up all time. sorry! scotty.

[Ursa Major]

Scotty, now I finally understand why you are doing the gluten challenge. What a predicament to be in! You are right, it would have been best if you would have done the biopsy after all before going gluten-free.

Are you able to find a better endocrinologist? A gluten intolerance could cause your hormones to be low. Feeling better was probably a combination of hormone replacement and eliminating gluten. I just wished that those specialists (who will only look at a small part of the whole picture) would understand that your whole body works together, and everything you eat and do will have an effect on ALL of it, not just one gland or one system.

That you are being forced to go back on gluten because of an ignorant doctor makes me feel angry for you.

I am in a similar situation, I saw an endo a while ago. I had asked my doctor to refer me to an endocrinologist who specializes in adrenals, thyroid and pituitary. She sent me to one who specializes in diabetes and is completely ignorant when it comes to anything else!

I did the testing with her anyway, thinking that those tests are all the same and can't be messed up. I was wrong, she did it all wrong in her ignorance, predictably getting results that claim I am just fine and don't need 'any of those hormonal supplements' (her words).

In fact, I managed to get all the results, and some of them are anything BUT normal and indicate a problem.

I haven't been brave enough to try again with somebody else, and have to buy my hormones from the Internet, which isn't entirely legal here in Canada. But I can't live without them!

My doctor will grudgingly prescribe the desiccated thyroid, but that's it. If I wouldn't have taken quite a lot of the hydrocortisone before my recent dental surgery, it could have killed me.

A doctor in Germany diagnosed me with adrenal insufficiency last summer, but no doctor here in Canada will take it seriously (idiots, the bunch of them)!

Okay, I do see what you are up against. It isn't fair, and very wrong, that in North America doctors will only treat lab numbers, not patients, and don't care about symptoms.

[scottyfeelsick]

Ursa Major, yeah, it is frusterating. The problem with finding another doctor, is that I don't have insurance, but since I go to OHSU, which is also a university, they have financial discounts, and for me it is all 100% free!!! So I am kinda stuck there, but it is supposed to be a really great hospital.

They have me on thyroid and testosterone replacment right now. My Endo is just writing it off as a pituitary problem due to a head injury I had years ago, UNLESS I get a biopsy. Without a biopsy, he treats me like a negative biopsy anyway.

Thats why I wanted to mention something to MLB, not for treating or "knowing" about celiac, but for the possiblity of having to see a doctor for some of the things that may have been damaged from gluten over time.

I hope that my endocrine problems are from gluten, and that I might then have at least an outside chance someday of stopping or lessening my medication, but if it all origianly was caused by some head injury, I guess I will most likely have to take them for life. Either way, I kinda need to continue seeing my endocronologist to be able to monitor my levels to see if they get better after going gluten free.

Anybody that wants to talk to their doctor about that kind of relationship to gluten usually needs a biopsy to be taken seriously(this is so dumb, I know, but it is the way things are right now). I know that after all this, I might be neg anyway, and then I'm back to where i'm at right now. This sucks!. But I would have had a better chance for a real test before ever going gluten free. It is at least something for people to consider when they are at that point in their search for feeling better. I don't know. just my thoughts right now.

[MLB]

MLB, I'm sorry, I just realized that I called you Nora_n. I am sorry, I am no good at chat rooms, I get everybodys names mixed up all time. sorry! scotty.

Oh no problem. I appreciate your input.

[gfpaperdoll]

Scotty most people end up with a negative biopsy anyway - get the biopsy if you have to, but I would not eat gluten before hand... You can made the argument about the 22 feet of intestine etc & only a tiny sample - if you do not tell them beforehand they will probably only take 2 samples anyway...

& yes it is a shame your endo is so closed minded - but since the college or govenment or someone is paying him I guess he can think whatever he wants & not have to worry about his patients... The fact is that there are a lot of great endo drs and gastro drs and others that are not only approving of Enterolab but are ordering Enterolab for their patients - and some of these are very high end doctors. So you might could talk to your endo & get him to ask around & see if any of the other drs are using it - but he probably would not tell you if they did - because the bottom line is he does not make any more money using that lab test - but if he does an endoscopy - then he gets money, the anethesiologist gets money, & the hospital gets money... That is how the system works. & no self respecting doctor is going to stick their neck out & change that. Oh, well a few like Dr. Fine do...

[nora-n]

I am usually on thyroid forums, and they have lost of problems with endos too.

And, many have adrenaloblems and a hard time getting diagnosed.

Often people have to switch to a D.O, Doctor of osteopathy to get treated for thyroid issues.

Some have adrenal and pituitary problems, and know a lot about it now.

Some have gotten much better going gluten-free , last year and the year before there were several messages about that.

nora