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

Just Got Enterolab Results In, Confused!

mindypal

Recommended Posts

mindypal Rookie
mindypal
Posted

Hi everyone,

Well after getting negative blood work from my gastro doctor, and doing a biopsy last week (still don't have the results from that yet), I just got results back from Enterolab for IgA. Mine was an 11 and they say normal is under 10 and suggested I avoid gluten permanently. For some reason that number makes it hard to think about doing that. If the number was higher I could see a problem, but it's just SOOOO close to normal. Do you all still think it's necessary?

What do you all do as far as restaurants? Just stay away from them altogether? Or are there certain things like french fries that are safe? Part of me wanted to get a positive diagnose just to have an answer but now it's still kinda unclear to me and a little weird to think about completely changing my lifestyle. I'm a single 28 year old gal so I'd be doing this on my own. Any suggestions???

Thanks!!!

:)

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

Celiac.com Sponsor (A8-M):


celiacgirls Apprentice
celiacgirls
Posted

I would try it for a while and see if you notice a difference. I got a 10 on my casein test from Enterolab and I think I notice a difference. My daughter got a 9 for soy and I'm pretty sure she needs to avoid it anyway. We are still trying to avoid both of these for a month at least before re-introducing but keep making mistakes and having a reaction.

Not all french fries are safe. They can be fried with the wheat-covered chicken nuggets or something else and be contaminated that way.

I don't like to eat at restaurants any more but it is hard to totally avoid. I try to eat at the ones with gluten free menus like Outback and PF Changs. Or restaurants with a chef who will make something especially for me.

Corkdarrr Enthusiast
Corkdarrr
Posted

I think the positive dietary response is the most important. I just received my Enterolab results and did not have either of the celiac genes, but did have two gluten sensitivity genes. While it's nice to know that I'm not doing any damage when I do mess up, I'm not going to go back to eating how I used to if it's going to make me feel like crap.

As for restaurants, I have found two in my area that work for me and I am pretty much afraid to go anywhere else because the odds of getting sick are REALLY high. I've worked in kitchens and the risk for CC is definately there - its' a gamble to eat out. If you do, I'd make sure to go when it's not busy so that the kitchen staff doesn't get distracted by everything else.

Courtney

mindypal Rookie
mindypal
Posted
  • Author

Thanks for your replies. I went ahead and have been doing the gluten-free diet, at least as best I can for now. I know it must take a while to get the hang of this stuff. Hopefully I'll notice a difference soon! :)

CarlaB Enthusiast
CarlaB
Posted
but did have two gluten sensitivity genes. While it's nice to know that I'm not doing any damage when I do mess up

Courtney, I don't believe this is necessarily true. I was having an autoimmune response and do not have the celiac genes ... I may not be damaging my intestine, but I'm damaging something. It's still very serious even if you "only" have the gluten intolerant genes. Someone please correct me if I'm wrong ....

AndreaB Contributor
AndreaB
Posted

Mindypal,

Did you have the complete panel done with the gene test?

My son tested at 10.5 with a malabsorption score just over 500. Enterolab has set the cut off at a point where people notice improvement. I'm assuming their cutoff point somewhat falls in line with a moderate IgG ELISA test. That's just based on my testing. I have yet to get the families results to see if it corresponds to them.

It is totally up to you whether you adopt the gluten free diet, but I would highly recommend it. If my family gets glutened, we have "d". Our numbers were all on the low end.

par18 Apprentice
par18
Posted
Thanks for your replies. I went ahead and have been doing the gluten-free diet, at least as best I can for now. I know it must take a while to get the hang of this stuff. Hopefully I'll notice a difference soon! :)

Hi,

I can't tell you what a good blood test number would be in the beginning. I did not have the blood test because I was so sick I had a positive biopsy. I can tell you that after being 100% compliant on the diet for 14 months I had a follow-up blood test this past August. All my values from the complete panel were a "1". This did not surprise me as I feel perfectly healthy. You can play the numbers game until you start to get really sick but my advice to you would be to start adjusting your lifestyle. You remember the old saying "an ounce of prevention is worth a pound of cure", well that just about sums up what will happen it you are gluten intolerant and don't commit to this lifestyle. Good luck.

Tom

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

Celiac.com Sponsor (A8-M):


Corkdarrr Enthusiast
Corkdarrr
Posted
Courtney, I don't believe this is necessarily true. I was having an autoimmune response and do not have the celiac genes ... I may not be damaging my intestine, but I'm damaging something. It's still very serious even if you "only" have the gluten intolerant genes. Someone please correct me if I'm wrong ....

Carla, I'm still unclear on a lot of things. Hence my enormous amount of posts lately!

From what I understand, because I did not have eitehr of the celiac genes, I do NOT have celiac. But I do have gluten intolerance. And again, from what I understand, if I eat gluten it's going to make me sick - obviously! :P But if I go gluten-free for a long while and then mess up now and again, it won't do any permenant damage. I think the autoimmune thing only happens when there's a decent amount of gluten going on - not just a small amount of CC, for example.

I don't know exactly where I gathered the info to make such a decision, in fact it's entirely possible that I've just made it all up! So please - anyone - correct me if I'm wrong.

Either way, I'm pretty much set on being gluten-free for the rest of my life so I guess it doesn't matter all that much.

Yenni Enthusiast
Yenni
Posted

This is from EnteroLabs page:

Our antibody tests range numerically from a positive value of 10 to as high as 350 Units. The average positive value is about 45 Units. The "units" are based on the amount of antibody detected in the assay which is reflected by more color developing as the result of a color-generating chemical reaction. Thus, the more antibody present, the higher the units of positivity. However, the amount of antibody present is not a measure of clinical severity, but rather, the amount of antibody being produced by the plasma cells in the intestine in response to gluten at that site. A positive value of any degree means your immune system is reacting to dietary gluten in the way the immune system reacts to an infection. With an infection, this immune reaction ultimately kills and clears the infectious organism. But with gluten, the reaction continues as long as it is eaten. Thus, the only way to halt this immune reaction is to remove all gluten from the diet. This is true whether your positive test is 10 units, 350 units, or anything in between.

Are the numeric values of antigliadin antibody a measure of severity?

As mentioned above, the numeric value of antibody is not necessarily a measure of severity of how your body is reacting to gluten, or the resultant damage of the reaction. This is because the main perpetrator of the immune response to gluten is not antibody but T lymphocytes (T cells) producing tissue-damaging chemicals called cytokines and chemokines. How much antibody is produced at the stimulus of T cells differs in different people. Furthermore, some people simply do not or cannot make alot of intestinal IgA antibody even though gluten may be stimulating a severe T cell-mediated immune response. Unlike antibody levels, the numeric value of malabsorption test results are an indicator of severity of intestinal damage (see below).

So as far as I understand it it doesn't matter if your result is low or high. You are gluten intolerant no matter what as long as it is positive.

AndreaB Contributor
AndreaB
Posted

Thanks for that post Jenny. :)

I had read that before.....but it's nice to be reminded.

Guest Kathy Ann
Guest Kathy Ann
Posted

My enterolab numbers were on the low positive side as well. But I had a mild malabsorption, which told me that I definitely had some active damage going on.

Furthermore, I had previously had a saliva test including a "Total Secretory IgA." It was borderline low which might explain my lower numbers on the stool test. If I had never done the saliva test, I might not have realized that I was one of those people (2% of the population) who just don't put out much IgA and will always show lower numbers on those tests no matter how much damage is going on.

It looks to me like ANY antibody activity must be paid attention to. It's like pass or fail college courses or like pregnancy tests. You either pass or you fail, you either are or you aren't.

Corkdarrr Enthusiast
Corkdarrr
Posted
This is from EnteroLabs page:

So as far as I understand it it doesn't matter if your result is low or high. You are gluten intolerant no matter what as long as it is positive.

Okay, so then what this means is that ANY time I eat either gluten or casein it will create an autoimmune reaction in my body? And this is why I can never, ever eat these things again, right?

Clearly, I am still in some sort of rationalization stage!!

-Courtney

Yenni Enthusiast
Yenni
Posted
Okay, so then what this means is that ANY time I eat either gluten or casein it will create an autoimmune reaction in my body? And this is why I can never, ever eat these things again, right?

Clearly, I am still in some sort of rationalization stage!!

-Courtney

I am very new at this too and just got my results the other week. My Gluten was 12 and my casein was 11. On top of that my soy was 9 but I am pretty sure I have a problem with soy still, so I don't eat that either.

Even if my results were low there is no doubt in my mind that I am not intolerant to these things because I have been very sick for almost 5 years now and I noticed changes right away after I stopped.

So yes, I would have to say that every time you eat those things there will be an autoimmune reaction.

I am pretty sure I am in the same stage as you. ;) I am trying to make sence of all of this.

CarlaB Enthusiast
CarlaB
Posted
Carla, I'm still unclear on a lot of things. Hence my enormous amount of posts lately!

From what I understand, because I did not have eitehr of the celiac genes, I do NOT have celiac. But I do have gluten intolerance. And again, from what I understand, if I eat gluten it's going to make me sick - obviously! :P But if I go gluten-free for a long while and then mess up now and again, it won't do any permenant damage. I think the autoimmune thing only happens when there's a decent amount of gluten going on - not just a small amount of CC, for example.

I don't know exactly where I gathered the info to make such a decision, in fact it's entirely possible that I've just made it all up! So please - anyone - correct me if I'm wrong.

Either way, I'm pretty much set on being gluten-free for the rest of my life so I guess it doesn't matter all that much.

I am like you in that I do not have the celiac genes, but I do have an autoimmune reaction to gluten. Even for a celiac, the damage heals .... and I know a small amount of cc makes me very ill for over a week. I wouldn't assume that the autoimmune reaction depends on the quantity of gluten consumed.

I think the reason we're so confused is that there doesn't seem to be much research on gluten itolerance vs. celiac. I think both are basically the same. I know that I've been every bit as ill as a celiac!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    3. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    4. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • 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.