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Enterolab Newly Diagnosised W/surprise!

njcole123

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njcole123 Newbie
njcole123
Posted

Hello to all! I am 51 with a mom diagnosised with a biopsy. I sent to EnteroLab for "the best value" and here's my numbers:

Fecal Antigliadin IgA 22.5 (normal range <10 units)

Fecal Antitissue Transglutaminase IgA 24 Units (Normal range <10 Units)

Quantitative Microscopic Fecal Fat Score 91 Units (Normal range <300 units-I'm absorbing well!)

Fecal anti-casein (cow's milk) IgA antibody 16 Units (Normal range <10 Units-SURPRISE)

And I have two copies of a gene that predisposes to gluten sensitivity (but not the main gene for celiac sprue)--I'm still confused about this-----

Am I gluten sensitive or celiac?

My surprise was the dairy. I love dairy and I didn't realize that it was killing me.

My relatives look with skepticism on "mail-order diagnosis". Any help? I think that EnteroLab is valid.

I have gone gluten free and dairy free.

This will be my eating life!

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Rachel--24 Collaborator
Rachel--24
Posted

Hi,

Enterolab cant officially diagnose Celiac so you wouldn't know "for sure" unless you had a biopsy with visible damage. It really doesnt matter because what Enteroab *does* tell you is that eating gluten is not good for you and you can develop further health problems if you dont follow the diet. You may never end up with flattened villi (Celiac) w/out having the main genes but there is no guarantee on this so be happy you have answers and good luck with the diet! :)

P.S. I also dont carry either of the main genes. They havent yet identified all the genes associated with Celiac...there are some who are "proven" Celiac with no main gene.

njcole123 Newbie
njcole123
Posted
  • Author

Thanks, Rachel. My mom has liver damage with her celiac and she's not in good health at all. I don't intend to harm myself from here on out.

Shouldn't her Dr. had the family notified of this genetic condition? Are we just to keep on damaging ourselves with something toxic to our systems?

I don't want to wait until I have damaged intestines or anything else if I can prevent it. But I still can't believe that mom's Dr. Who is supposed to be a good internist didn't tell my parents about the genetic run of gluten intollerance. One of my brothers is a type 1 diabetic--the other has rheumatoid arthritis--I have skin problems, eszuma.

We are rife with gluten complecations.

Nancy

Rachel--24 Collaborator
Rachel--24
Posted

Yeah...her doctor should have recommended that all family members be tested but sometimes the doctors dont know as much as they should. Also, I dont know how long ago your Mom was diagnosed but even 5 years ago they knew alot less than what is known now.

CMCM Rising Star
CMCM
Posted
Hello to all! I am 51 with a mom diagnosised with a biopsy. I sent to EnteroLab for "the best value" and here's my numbers:

Fecal Antigliadin IgA 22.5 (normal range <10 units)

Fecal Antitissue Transglutaminase IgA 24 Units (Normal range <10 Units)

Quantitative Microscopic Fecal Fat Score 91 Units (Normal range <300 units-I'm absorbing well!)

Fecal anti-casein (cow's milk) IgA antibody 16 Units (Normal range <10 Units-SURPRISE)

And I have two copies of a gene that predisposes to gluten sensitivity (but not the main gene for celiac sprue)--I'm still confused about this-----

Am I gluten sensitive or celiac?

My surprise was the dairy. I love dairy and I didn't realize that it was killing me.

My relatives look with skepticism on "mail-order diagnosis". Any help? I think that EnteroLab is valid.

I have gone gluten free and dairy free.

This will be my eating life!

I'm just curious about what prompted you to get tested in the first place....were you having some symptoms? Your results were somewhat similar to mine, except that I showed up with one celiac gene and one for gluten sensitivity. And the dairy didn't surprise me all that much because I've always had terrible digestive problems with dairy, more so than with gluten I think.

In any case, given all the abundance of evidence about the problems with eating gluten in general, it would not be a bad thing to eliminate it from your diet. I asked Enterolab about the situation given the fact that I have had symptoms for so very long, yet the malabsorption score was quite low for me....and what did that mean? Should I assume no damage would ever occur since it hasn't yet? But Dr. Fine's advice was that I should not eat gluten, or dairy, because serious damage could eventually occur. And I have read many many places that the first inkling many people have that they are celiac is when they get a cancer diagnosis. I don't want to be in that category, and besides, I was sick and tired of the symptoms I had from eating gluten and dairy.

There will always be naysayers about things like Enterolab, but they are not fly by night and when you read all the info on their site, it all adds up. This is a doctor who has a very specific and ongoing interest in celiac disease. Most doctors don't know diddly squat about it yet they assure you that you don't have it....

You just have to evaluate the larger picture. And decide how much expensive and effort you want to do. You could undergo a biopsy just "to see", but then again, not even that can always be accurate. A positive biopsy is informational, but a negative biopsy doesn't necessarily mean you don't have it either.

The bottom line is that celiac is elusive....not all genes are identified yet, the knowledge is not 100% about the condition, testing methods are not 100%. You do what you can with what seems reasonable to you, and ultimately, if you have symptoms, a gluten free diet often tells you far more than a test will. :rolleyes:

njcole123 Newbie
njcole123
Posted
  • Author

The reason that I sent off to the Enterolab for the test is because that my mother has been diagnosed (biopsy) celiac about 18 months ago. The doctor that diagnosised her just gave her a handout with terrible information about foods containing gluten and sent her home. No counciling or recommending that the relatives get tested.

What surprised me was the dairy (anti-caisin antibody). I began eating gluten free when I sent in the test, but I continued to eat dairy-several times a day!

But also surprising was how I felt after I became dairy-free.

It feels good to feel this well!

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      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
      Accuracy of testing concerns

      By trents · Posted

      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
      Accuracy of testing concerns

      By McKinleyWY · Posted

      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
      A little about me and my celiac disease

      By trents · Posted

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      By Peace lily · Posted

      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.
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