My Sister's Enterolab Results- What Do They Mean For Me?

[silverfleur]

My sister is Newburyport on this board, and she had already stopped eating gluten when she had these tests run. She is going to stay off gluten anyhow because she definitely feels better off of it, and is not willing to do the gluten challenge to get the endoscopy. Basically she is all set and is too lazy - er, busy - to post these results and see what info you all might have for us.

We are both a little confused by these results though, as far as what they mean in regards to chance of developing cancer as a result of gluten sensitivity? Is a higher predisposition to cancer no longer a concern because her celiac genes came back negative?

I am a vegan and am currently eating wheat. I don't have any extreme symptoms that I know of, but I am a generally very itchy person (skin & scalp), I may have a bit of bloated stomach, and I have had trouble with severe ear infections with no known cause. I also had a very low B12 level, and I am now taking supplements - this could be due to new vegan diet, strong antibiotics I was taking for ear infection, or perhaps malabsorbtion related to gluten intolerance/celiac. I would try giving up wheat/gluten for a while to see how it affects me, but I don't want to end up unable to get the blood tests. According to these results ... what do they mean for me? What would you suggest I do? Go to the Dr and ask for what tests?

Thanks in advance for any clarification of these results you can provide and for any advice you may have for me.

Silverfleur

Final Laboratory Report

Date: 3/13/2009

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

Fecal Anti-gliadin IgA 16 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

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

Fecal Anti-casein (cow's milk) IgA 5 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Anti-tissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal Anti-casein (cow's milk) IgA: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

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.

For more information about result interpretation, please see Open Original Shared Link

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: American Red Cross

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

Thank You For Allowing EnteroLab to Help You Attain Optimum Intestinal And Overall Health.

[GFinDC]

I seem to remember reading that the heightened risk of intestinal cancer among untreated celiacs was reduced to a normal range after following the gluten-free diet for 5 years. But I have no clue what the risk is for people with gluten sensitivity vs celiac.

[ravenwoodglass]

You should go ahead and ask your doctor for a celiac panel. Your sisters tests show she is making antibodies to gluten but those tests only have meaning for you in the sense that if one family member is effected by gluten others are likely to also. You and your sister have the same genetic 'soup' but you may have inherited different ingredients, so to speak.

As I understand it a celiacs chances of developing a celiac related cancer drop back to normal levels after about 5 years on the diet. However cancer is only one of the risks, celiac can impact just about any organ including the brain.

You don't need a doctors permission to be gluten free but if you can get blood testing done it can be helpful in getting doctors to order the tests that need to be done like full vitamin and mineral panels and scans for osteoporosis.

[gfb1]

[snip]

You and your sister have the same genetic 'soup' but you may have inherited different ingredients, so to speak.

[snip]

rotfl... i have NEVER heard it put that way!!! very funny!!!

[newburyport]

edit.

[silverfleur]

You should go ahead and ask your doctor for a celiac panel.

Hi Ravenwoodglass, thanks for your reply. Do you know if the celiac panel also test for gluten sensitivity/intolerance? Or is that a seperate test (if there is a blood test for it)?

Thanks!

[sbj]

Hi silverfleur and newburyport:

I am very curious: won't anyone at Enterolab answer these questions for you?

I am not aware that there is any commonly accepted test for gluten sensitivity. I am also unaware of any medical study that indicates that gluten sensitivity can predispose one to a cancer risk. I think it's very important for you both to recognize that there are major differences between gluten intolerance and celiac disease; between an immunologic response and an auto-immune response; and between an Enterolab gluten sensitivity stool test and a celiac blood panel. You should also be aware that a genetic capability or even predisposition does not mean that either of you will ever acquire anything.

Perhaps your regular doctor could work with you to help answer some of these questions?

[nora-n]

If you read throught this thread https://www.celiac.com/gluten-free/index.php?showtopic=54018 you see that there are celiacs with DQ2,2 too. One cannot say that this excludes celiac or cancer risk.

nora

[silverfleur]

Hi silverfleur and newburyport:

I am very curious: won't anyone at Enterolab answer these questions for you?

I am not aware that there is any commonly accepted test for gluten sensitivity. I am also unaware of any medical study that indicates that gluten sensitivity can predispose one to a cancer risk. I think it's very important for you both to recognize that there are major differences between gluten intolerance and celiac disease; between an immunologic response and an auto-immune response; and between an Enterolab gluten sensitivity stool test and a celiac blood panel. You should also be aware that a genetic capability or even predisposition does not mean that either of you will ever acquire anything.

Perhaps your regular doctor could work with you to help answer some of these questions?

We are aware there are "major differences" between all of the above items. We got that. That's why we are asking questions. I was looking for was a clarification or explanation. I was asking here because I was told there are some very friendly, helpful, and knowledgeable people at this board.

You know how doctors are, often times people who have been researching the subject online are far more knowledgeable than doctors, especially in anything nutrition-related - sad but true. I had a neurologist screaming at me a few months ago that my B12 could not possibly be so low if I was eating bread. Well, she had no idea what she was talking about because bread doesn't contain B12 normally. Just an example. Doctors tend not to be well-versed in every single subject and some will scoff at you for calling up and asking for your own celiac panels, etc.

You don't seem interested in answering any questions, just telling us to go elsewhere for info. Not even sure why you replied. Thanks anyhow.

[caek-is-a-lie]

Really? DQB1*0602 is a gluten sensitivity gene too? That's the main Narcolepsy gene everyone looks for in Narcolepsy patients. A large portion of the population has it, but if you have Narcolepsy, odds are you have that one. It's responsible for they hypocretin cell loss in the hypothalamus...I had no idea it was considered a gluten sensitivity gene. Hmmmm...do they just call anything on the DQB1 locus a gluten gene? I need to research that more.

I have DQB1*0301, the second most prevalent Narcolepsy gene, and that's also a Celiac gene. Hrmmmm...this is interesting...I almost half don't believe Enterolab but I'll let you know what I find out.

Sorry this isn't directly related to your question...I just found it surprising.

[EDIT: ok Enterolab calls *0301 a gluten intolerance gene, but I did find a study that found diagnosed Celiac patients with *0301, so...I dunno. But I did finally find some circumstancial evidence that *0602 is also a gluten intolerance gene. Not very convincing evidence yet...and one of the finds was Dr. Fine's international intellectual property claim on his testing, so that's kind of a circular reference isn't it? lol)

[sbj]

You don't seem interested in answering any questions, just telling us to go elsewhere for info. Not even sure why you replied. Thanks anyhow.

Ouch!

Actually I did provide answers to several of your questions. You asked about gluten sensitivity and I let you know that there is no industry standard or commonly accepted gluten sensitivity test. You asked about cancer risk related to gluten intolerance and I let you know that I knew of no medical studies showing any relation between gluten intolerance and cancer (I do know that studies show a relation between untreated celiac disease and cancer). I was honestly curious about why Enterolab could not answer your questions seeing as you had just paid hundreds of dollars for their services. I take it from your response that you feel the folks at Enterolab 'will scoff at you' for asking questions. That's a pretty sad commentary on their services. In a similar vein, if you feel your own doctor will scoff at you then can I suggest you run - don't walk - to a new doctor ASAP!!! I'm sorry that you find the provision of information to be somehow insulting and I sincerely apologize if you mistook my tone or did not appreciate my advice about contacting Enterolab or your doctor. I was sincerely trying to offer help by answering several of your questions and at the same time asking some honest questions.

That's what this forum is for.

[gfb1]

[snip] I had a neurologist screaming at me a few months ago that my B12 could not possibly be so low if I was eating bread. Well, she had no idea what she was talking about because bread doesn't contain B12 normally. [snip]

you could try Open Original Shared Link!!??

ok.. maybe not the best idea for a celiac; BUT, most commercial breads are fortified with vitamins B6, B12 and folate. if memory serves, i'm pretty sure a single serving (i.e., sandwich -- 2 slices) is around 10-15% of the RDA.

so... screaming is stupid. but the doc wasn't entirely incorrect.

please be careful in your interpretation of the 'gene' results. remember that these results refer to known MHC haplotypes that are CORRELATED to some disease state (whether celiac, narcolepsy or anything else). the degree and significance of these correlations is highly dependent upon number of patients, distribution of patients, accuracy of diagnosis(es) and the number of both genes and diseases measured. even in the most ideal circumstances, the MHC haplotypes are NOT the cause of the disease, nor are they necessarily predictive or diagnostic.

finally, i'm a bit curious as to what question(s) you felt were not answered...

[lbd]

Please be aware that there are several people on this forum that are very anti-Enterolab and hunt down every post that mentions the lab to chastise the person who wrote it. I have found Enterolab and the people who work there to be very helpful. There are many people who do not subscribe to the "I am sicker than you" philosophy of celiac vs gluten sensitivity based on faulty blood or endoscopy tests. Many, including several doctors, believe that celiac is on the advanced end of a spectrum of gluten sensitivity. Dr. Vikki Petersen has written a book called "The Gluten Effect" which wonderfully explains gluten sensitivity and the multiple effects it can have on the body. You might want to take that to your doctor to help back up your results from Enterolab. There is also a lot of information on the Enterolab site itself that you could take to your doctor. However, just like with some people here, you may have trouble convincing a doctor who had thirty minutes of training in medical school on gluten intolerance that you have gluten sensitivity.

Good luck and just ignore the naysayers. They are on a mission to dismiss gluten sensitivity and I'm not sure why. There are many here, me included, who post very little because of their negativity. There are other forums which tend to be friendlier and more open to discussion. Email me privately if you are interested.

lbd

[nora-n]

If you follow the link in my previous posting here it also explains why 0301 can be a celiac gene, it is because it often has the 05* alpha chain together with it, which is half a DQ2 celiac gene.

Six percent of celiacs in that study have half a gene.

So 0301 (DQ7) is not just a gluten sensitive gene, it is also sometimes a celiac gene.

And they found a lot of DQ7 celiacs in sardinia or whereever .

Here they mention DQ6 celiacs. Open Original Shared Link

To decipher the DR stuff you must go to wikipedia HLA DR. HLA DQ has a good list over alpha and beta chains too.

[silverfleur]

Please be aware that there are several people on this forum that are very anti-Enterolab and hunt down every post that mentions the lab to chastise the person who wrote it. I have found Enterolab and the people who work there to be very helpful. There are many people who do not subscribe to the "I am sicker than you" philosophy of celiac vs gluten sensitivity based on faulty blood or endoscopy tests. Many, including several doctors, believe that celiac is on the advanced end of a spectrum of gluten sensitivity. Dr. Vikki Petersen has written a book called "The Gluten Effect" which wonderfully explains gluten sensitivity and the multiple effects it can have on the body. You might want to take that to your doctor to help back up your results from Enterolab. There is also a lot of information on the Enterolab site itself that you could take to your doctor. However, just like with some people here, you may have trouble convincing a doctor who had thirty minutes of training in medical school on gluten intolerance that you have gluten sensitivity.

Good luck and just ignore the naysayers. They are on a mission to dismiss gluten sensitivity and I'm not sure why. There are many here, me included, who post very little because of their negativity. There are other forums which tend to be friendlier and more open to discussion. Email me privately if you are interested.

lbd

lbd,

thank you very much for your kind reply. i appreciate your input. i will definitely check out that book.

[RollingAlong]

This is an interesting thread. I had read that it can take years for a B12 deficiency to develop.

Here is a NHS website (UK)

Open Original Shared Link

Is dietary response a commonly accepted test for gluten sensitivity? Or is this controversial? It could be, I suppose, if you also change the carbohydrates in the diet.

It makes sense that there aren't studies linking gluten sensitivity to cancer if we don't even have reliable tests for it yet.

Gluten researchers are seriously overworked!

[silverfleur]

you could try Open Original Shared Link!!??

ok.. maybe not the best idea for a celiac; BUT, most commercial breads are fortified with vitamins B6, B12 and folate. ...

Wonderbread? I would never put that garbage in my body. All flour is fortified with iron and some B vitamins, but not B12. Please provide me with a link to proof that "most commercial breads are fortified with vitamins B6, B12 and folate."

FDA Guidelines for Enriched Flour:

Enriched flour is white flour with added nutrients intended to compensate for the loss of natural nutrients that occurs during processing. Each pound (0.45 kg) of flour must contain the following nutrients in order to be considered enriched according to the United States Food and Drug Administration (FDA) guidelines: 2.9 milligrams of thiamine (B1), 24 milligrams of niacin (B3), 0.7 milligrams of folic acid (B9), 1.8 milligrams of riboflavin(B2), and 20 milligrams of iron.

Flour is NOT required to be fortified with B12, and none of the commercial whole wheat breads in my kitchen have B12 in them.

[gfb1]

Wonderbread? I would never put that garbage in my body. All flour is fortified with iron and some B vitamins, but not B12. Please provide me with a link to proof that "most commercial breads are fortified with vitamins B6, B12 and folate."

FDA Guidelines for Enriched Flour:

Enriched flour is white flour with added nutrients intended to compensate for the loss of natural nutrients that occurs during processing. Each pound (0.45 kg) of flour must contain the following nutrients in order to be considered enriched according to the United States Food and Drug Administration (FDA) guidelines: 2.9 milligrams of thiamine (B1), 24 milligrams of niacin (B3), 0.7 milligrams of folic acid (B9), 1.8 milligrams of riboflavin(B2), and 20 milligrams of iron.

Flour is NOT required to be fortified with B12, and none of the commercial whole wheat breads in my kitchen have B12 in them.

actually, the same link as in my original post...

Open Original Shared Link

10% of B12 rda...

though, i would never really suggest that anyone celiac should eat wonderbread... or any bread for that matter...

i was just being obnoxiously glib as a substitute for humor...

[silverfleur]

actually, the same link as in my original post...

Open Original Shared Link

10% of B12 rda...

though, i would never really suggest that anyone celiac should eat wonderbread... or any bread for that matter...

i was just being obnoxiously glib as a substitute for humor...

Wonderbread does not = "most commercial breads"

I would not recommend that anyone, celiac or not, eat Wonderbread!

Anyhow, this thread wasn't about B12 in bread...