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

Test Results - Confused


CraigN

Recommended Posts

CraigN Newbie

Hi,

I recently obtained my results from Enterolab and here are my results:

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

Fecal Antigliadin IgA 11 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow


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



Celiac.com Sponsor (A8-M):



CraigN Newbie

Anybody? :unsure:

gfp Enthusiast

Craig, sorry hard question I can't answer but others can...

just bumped this for you so hopefully they'll see it when different timezones wake up ... :D

ravenwoodglass Mentor
Hi,

I recently obtained my results from Enterolab and here are my results:

Do the casein results indicate that I can eat small amounts of casein and it won't cause any problems - or is it like gluten where a small amount can give your body fits?

Also, the genetic testing info provided in the FAQ for the test results is difficult for my feeble brain to understand. I must've zoned out during the genetics part of biology class! I don't understand what "0303" and "0501" represent. Any help would be great. Thanks!

The results show you are gluten intolerant and carry the genes for that. My educated guess would be that the numbers define some kind of genetic subtype. I took part in National Geographic Genome Project and there were lots of numbers like this in the gene test results.

As to casein, I would do a complete exclusion of this for quite a while, the lab says 12 months, and then do a dietary challenge. They are saying to do this because of the possibility that the results were a false negative. It can take a long time for antibodies and their effects to leave the system thus the resaon IMHO for the long exclusion.

Hopefully others will also add some insight. Have you telephoned the lab to see if they can make things clearer? They might be able to give some answers as well.

CraigN Newbie
The results show you are gluten intolerant and carry the genes for that. My educated guess would be that the numbers define some kind of genetic subtype. I took part in National Geographic Genome Project and there were lots of numbers like this in the gene test results.

As to casein, I would do a complete exclusion of this for quite a while, the lab says 12 months, and then do a dietary challenge. They are saying to do this because of the possibility that the results were a false negative. It can take a long time for antibodies and their effects to leave the system thus the resaon IMHO for the long exclusion.

Hopefully others will also add some insight. Have you telephoned the lab to see if they can make things clearer? They might be able to give some answers as well.

Thanks. I did send them an email yesterday. It's nice to know there's a wealth of information out there - if you know where to look!

NoGluGirl Contributor
Thanks. I did send them an email yesterday. It's nice to know there's a wealth of information out there - if you know where to look!

Dear CraigN,

From what I can tell, the only thing you need to be extremely concerned about is gluten. Your levels were out of the normal range for the IgA. You also have two gluten intolerance genes. That puts you at severe sensitivity risk. Not a speck of the stuff needs to get in your system! The casein really appears borderline. I would either go very light on it, or exclude it altogether. You may want to avoid it completely for a couple of weeks, and then add it back in to see if you tolerate it. I hope that helped make things less confusing. Welcome to the board Craig!

Sincerely,

NoGluGirl

CraigN Newbie
Dear CraigN,

From what I can tell, the only thing you need to be extremely concerned about is gluten. Your levels were out of the normal range for the IgA. You also have two gluten intolerance genes. That puts you at severe sensitivity risk. Not a speck of the stuff needs to get in your system! The casein really appears borderline. I would either go very light on it, or exclude it altogether. You may want to avoid it completely for a couple of weeks, and then add it back in to see if you tolerate it. I hope that helped make things less confusing. Welcome to the board Craig!

Sincerely,

NoGluGirl

Thanks! I got a response from Enterolab regarding the casein:

Dear Craig, Even though you are right on the cusp, we still recommend that you omit casein from your diet. This number confirms that you are intolerant to the protein. If you were to continue to consume casein, this number would eventually climb. Unfortunately, casein can cause the same problems that gluten does. Your body will produce the antibody against the casien protein, as it does with the gluten protein and the presence of the antibody in your system is what can trigger the other medical problems to occur. I wish I had better news for you.

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



Celiac.com Sponsor (A8-M):



hathor Contributor

You seem on the cusp for both gluten and casein. Plus you don't have positive results for anti tissue transgl. or malabsorption. Have you gone gluten-free and had positive results? If not, I would first wonder if you have a problem with either substance. When scores can be substantially higher, is a 10 or 11 rather than a 9 definitive enough to change your life?

Nearly everyone in the US has celiac genes or gluten intolerance genes (as the latter is defined by Enterolab). Only some of Asian heritage don't. So I wouldn't be that influenced by the genetic information.

I had a marginal test result for yeast myself. (Egg, too, but I was actively avoiding it for some time because it always seems to make me sick.) I asked what the margin of error was for the test, and Enterolab didn't answer. Dr. Fine hasn't published and is the only one doing this testing. So I don't know that a marginal test result should be taken as gospel if you have nothing else.

For my cusp scored substance, I decided to go without for six months to a year (haven't decided yet). Then I'll add it and see if I have a response. I have noticed problems with everything else I was positive to.

Have you yet gone gluten-free? If so, for how long & did you have a positive response? I would go by the answers to these questions rather than the test results.

chrissy Collaborator

craig---keep in mind that dr. fine feels that NO ONE should ingest dairy. personally, i wouldn't base any life changing decisions based on those test results----the only (barely) positive result you have is anti-gliadin, which can be raised by conditions other than celiac.

CraigN Newbie

Have you yet gone gluten-free? If so, for how long & did you have a positive response? I would go by the answers to these questions rather than the test results.

I originally had a CAT scan (negative) and a colonoscopy in March - the colonoscopy turned up a few benign polyps. However, the pain was still evident.

I've been gluten free since March 12 and have lost 16 pounds. The pain in my lower left abdomen went alway almost immediately. One day a few weeks ago after having 3 cups of coffee I had really bad pain. At that point I stopped drinking coffee and any residual pain subsided the next day. My BM's have normalized as well. I started going casein free about a week and a half ago.

hathor Contributor

It sounds like you will do well off gluten and casein then. You know the punch line to the old joke about, "Doctor, it hurts when I do this!" It sounds like your gut (small not large) is damaged and is reacting to foods that are hard to digest or irritating.

You might stop soy as well. Even if you don't do the tofu thing, it gets added to lots of things. I've read that gluten, casein & soy are similar in their gluing up of the small intestine.

I hope someone here has gone through something similar and can advise. It is unfortunate that they didn't do an endoscopy of the small intestine. Did your doctor recommend trying to go gluten-free or was this your idea? Does your doctor have any theory beyond I B(e) S(tumped)?

I guess as long as what you do eliminates your symptoms, that's the important thing.

CraigN Newbie
I Did your doctor recommend trying to go gluten-free or was this your idea? Does your doctor have any theory beyond I B(e) S(tumped)?

No, once the doctor got the blood test results back for celiac (which I forgot to mention) and saw that they were negative, I think he put that out of his mind. It was after reading a lot that I decided to go gluten free on my own. He did prescribe Bentyl to help the pain - which did absolutely nothing.

CMCM Rising Star

I don't believe there is any one test which can definitively say one is sensitive to any particular substance. And the test numbers don't always correlate as you would expect. Dr. Fine said quite clearly that the NUMBER doesn't indicate severity. For example, a person with an IGA barely above the "normal" <10 could be far sicker than someone with a score of, say, 80.

A lot of serious symdromes suffered by people WITHOUT celiac disease are vastly improved by eliminating both gluten and dairy from the diet. Both dairy and grain producers advertise heavily in all sorts of ways to convince us all that these food items are vital to the diet. They are NOT, and in fact, if truth be known, I suspect that we ALL would bev better off not eating grains or dairy at all, or at least, having them in only very tiny amounts. I once read that humans are the ONLY mammal that once weaned, continues to eat milk. Milk is for babies, cow's milk is probably best only for baby cows, and we don't need it after the age of 2 or so.

The biggest allergens are dairy, corn, soy, wheat, eggs. This should tell you something. The human body does its best to adapt to antigens, which is what the body considers a substance when it mounts an allergic reaction. Some people have more successful adaptive capabilities, but really....when you look at the huge number of complaints in our society....indigestion, heartburn, IBS type sumptoms, high blood pressure, diabetes at younger and younger ages, and all those expensive and profitable drugs to treat these things.....I'd say it's pretty logical to lay the cause at the door of nutrition...what we are eating. Just because you can eat it doesn't mean you SHOULD eat it!!!

CraigN Newbie
I don't believe there is any one test which can definitively say one is sensitive to any particular substance. And the test numbers don't always correlate as you would expect. Dr. Fine said quite clearly that the NUMBER doesn't indicate severity. For example, a person with an IGA barely above the "normal" <10 could be far sicker than someone with a score of, say, 80.

A lot of serious symdromes suffered by people WITHOUT celiac disease are vastly improved by eliminating both gluten and dairy from the diet. Both dairy and grain producers advertise heavily in all sorts of ways to convince us all that these food items are vital to the diet. They are NOT, and in fact, if truth be known, I suspect that we ALL would bev better off not eating grains or dairy at all, or at least, having them in only very tiny amounts. I once read that humans are the ONLY mammal that once weaned, continues to eat milk. Milk is for babies, cow's milk is probably best only for baby cows, and we don't need it after the age of 2 or so.

The biggest allergens are dairy, corn, soy, wheat, eggs. This should tell you something. The human body does its best to adapt to antigens, which is what the body considers a substance when it mounts an allergic reaction. Some people have more successful adaptive capabilities, but really....when you look at the huge number of complaints in our society....indigestion, heartburn, IBS type sumptoms, high blood pressure, diabetes at younger and younger ages, and all those expensive and profitable drugs to treat these things.....I'd say it's pretty logical to lay the cause at the door of nutrition...what we are eating. Just because you can eat it doesn't mean you SHOULD eat it!!!

Very well said...thanks for the information. Now that I'm gluten and casein free, I wonder if I'm harming the rest of my family's health by allowing them to eat the stuff. :(

Archived

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

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

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.