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

Enterolab Results....should I Believe Them?


kaydee

Recommended Posts

kaydee Newbie

Let me give you a little background. I am a fairly healthy, slightly overweight 45 year old woman. Was diagnosed with Hashimotos about 15 years ago and I currently am taking Armour thyroid for my hypothyroidism.

I have felt that the Hashimotos was not my only problem. Really could not put my finger on anything else though.

My major symptom is BRAIN FOG...really frustating at times

Overall Body aches..just feel inflammed

Joint pains. Seems to move around, might be shoulders one month, hips the next, elbows, feet

Depression

Eye redness occasioanly. eye Dr. suggested I get a full check up for any immune disorders. My MD did not seem to concerned about it

I have always felt better when I have gone on low carb diet, but I never have felt that is a healthy way to eat.

My endo did do blood work for celiac a while back and it was negative.

Came across this site about a month ago and decided to try Enterolabs. Did not want to pay for a full screening. I called and they suggested the Fecal Antigliadin IgA test. I must admit I have been kind of kicking myself for spending the $99 while I have been waiting for the results. I do not have the stomach problems that so many on this board write about.

Well they came in today and my results were

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 12 (Normal Range <10 Units)

Interpretation of Fecal Antigliadin 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.

Seems to be a low positive.

Do any of you have the neuro and joint issues but not the stomach problems? Does gluten sensitivity always cause intestinal damage?

I know I need to go gluten free and see if that resolves my issues, but I was just wondering if my symptoms warrant it.

Thanks


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



Celiac.com Sponsor (A8-M):



Matilda Enthusiast

...

Britt Dubendris Newbie

I was having lots of stomach problems when I ate. Drs. kept thinking IBS, heart burn, etc. I got blood work for Celiac = negative. So I tried Enterolabs and I have a gluten and caesin sensitivity. My level was only 30 which I think is pretty low, but I believe it! If I even let a piece of gluten pass my lips my stomach is killing me!!! So it's true. I wonder since the level is so low that maybe that's why it doesn't show up on blood tests?!!? Who knows. I would try the diet. I feel sooooooo much better on it. It is such a relief to be able to eat and not worry if you are going to be doubled over in pain afterwards. It is such a great feeling. It's a lot of work and I am still trying to get adjusted but I would give it a shot and see if it helps! Good Luck!

horsegirl Enthusiast

Hi there,

I stumbled across the gluten-free diet by accident, while trying to find relief from fibromyalgia & arthritis (I'm only 36 but have struggled for YEARs with joint pain, muscle pain, fatigue, etc). Anyway, I had the testing done through Enterolab too, & all my results were positive, including 2 copies of the gene linked with gluten intolerance (the type that causes neurological problems primarily). I never really had stomach issues from gluten, it was almost exclusively neuro/muscular. The stomach problems seemed more related to other foods. I also found that taking soy completely out of my diet helped the joint/arthritis pain very significantly. All of my blood tests were negative, so I do believe Enterolab. Try the diet & see what happens. As many people on this forum say, you don't need a doctor's permission to go gluten free!

Good luck, & let us know how things turn out, or if you need any suggestions with the diet.

Horsegirl

gfpaperdoll Rookie

Some of us do not have the intestinal problems. Especially the ones of us that have DQ1 & or DQ3. We do get intestinal problems but that seems to come after a lot of other damage. In us it is the last symptom, so to speak & it can come when we are older. So you might want to wait 10 years & see if you get intestinal symptoms - if you do not get cancer first. My DQ1 mother died of colon cancer,

It would be interesting if you would spend the money & see what genes you have.

With all your health problems, if I were you, I would be going gluten-free immediately and also dairy free...

ravenwoodglass Mentor
Some of us do not have the intestinal problems. Especially the ones of us that have DQ1 & or DQ3. We do get intestinal problems but that seems to come after a lot of other damage. In us it is the last symptom, so to speak & it can come when we are older.

This is my family to a T. I had considerable damage from neuro, muscle, joint and skin issues for a long time before tummy troubles were more than an occasional annoyance, well other than constant loud growling. The same can be said of my DH and DS except in them things were caught before severe GI troubles set in. For me gluten free was like lifting a big cloud that had hung over me since childhood. My son remarked after a few months gluten-free that he felt happy, and that he never knew what that felt like before. I cried when he said that and wish I had heard those words at 9 and not 19. Do try the diet, don't wait for things to get so bad that there is no coming back.

Linda56 Apprentice

Kaydee,

I had the same experience as you. I first got the gluten stool test. It was positve 20. I had blood work by my doctor that was negative. I sent off almost 2 weeks ago to entrolab for the genetic test. If it comes back positive I am going to show it to my doctor. I think it will motivate him to allow me a biopsy when I get a colonoscopy. If its negative then good. If the doctors think we find something they miss it scares them. I had this happen when I got testing for b-12 defincency. My doctor said I didn't have it because my b12 was above 200 but the lab says if your lower than 400 you need to be checked futher. It was found by accident by a neurologist from a problem I was having with my arm she just checked me out of curiousity. I hope you find out answers to what is bothering you. If you haven't had your B12 checked you might want to consider it. I have stomach problems but really more nuerological stuff that bothers me the most.

Linda


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Please check out this thread. Open Original Shared Link

It's good to rule out all possibilities. :)

Linda56 Apprentice

Hi CarlaB,

This is really shocking. I have all but the rashes on the symptoms list. I have never considered lymes disease. I live in Florida and until recent years it wasn't around here. I have never been an out doors person another reason I haven't considered it. These symptoms for me have been going on for 25 years. Is it more difficult for testing to show on a person if they had it for many years? Or after 25 years if a person started with Lyme disease would they be bed ridden or have dementia? I am glad you posted this for Kadee but now I am wondering if I should check Lymes disease out. I feel worn out just trying to get my doctor to work with me on celiac disease.

Linda

mftnchn Explorer

I second Carla's suggestion for Kaydee as well. While positive is positive on the gluten sensitivity test, the issue could be gluten sensitivity secondary to another issue and not celiac. It could also be celiac.

I had high positive enterolab results, and think that I am celiac and I also have lyme disease. The joint and muscle pain responded very well to antibiotic treatment, but it took 8 months on treatment before I saw any improvement. (Actually got worse due to die-off reactions). Fatigue improved too, but I have more stability now since GFCFSF, and much better elimination.

Linda, I had lyme disease for at least 17-18 years prior to treatment. The particular strain, combo of organisms in your infection, and how well you tolerate and respond to treatment are all individual. I wasn't bedridden, but many days when I struggled to get up and down a few stairs.

Nancym Enthusiast

You sound a lot like me. I had brain fog, thyroid disease, achy joints. Finally got diagnosed with Ankylosing Spondylitis (autoimmune disease). Self-diagnosed gluten intolerance then later dairy intolerance, which was confirmed by enterolab. Went on the paleo diet and all my autoimmune symptoms went away.

I feel great pretty good! Only thing I'm struggling with is low energy.

CarlaB Enthusiast

Nancy, you might look into NT Factor for energy. The full strength stuff is only available through doctors. It has been proven to be effective against fatigue. :)

Linda, it is shocking!! I'm a city girl myself, but I did have tick exposure 35 years ago. Looking back, I had symptoms as far back as then, too, but didn't have my first disabling flare up until 1982. I had two more after that before my current flare which started 4 years ago.

I have good days and bad days. Good days things seem near normal, but by the time I figured out it was Lyme, almost four years into the current flare up of symptoms, I was pretty disabled by the fatigue. I also had the migrating joint pain described by the original poster.

It can be difficult to get a positive test in someone who has had it for so long. Your immune system basically gets so overworked that the antibodies don't show up in the blood test.

The CDC says there is no Lyme in the area of Ohio where I contracted it 35 years ago. It is grossly under-reported ... in fact, my local doctor refused to report my positive test, so this area still shows "no risk" according to the CDC even though I personally know of five of us diagnosed last year, and I've talked to a couple others online.

Well, I don't want to get this thread off topic .... so let's move over to the Lyme Disease thread if you want to chat more about it. :)

kaydee Newbie

Thanks so much for all your replies. I have been out of town and have not been able to reply sooner. I am going gluten free immediatly. Your words of encouragment will make it easier to stick to it.

The Lyme disease is something I have never considered. I have lived in the desert in Arizona since early childhood, so I do not think it is very likely. It is a possiblilty that I picked it up on a trip though. I will definately keep it in mind.

Anxious to see how I feel on the gluten-free diet. Will update when I know more.

Thanks again for all of your replies!!!

Archived

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

  • 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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,866
    • Most Online (within 30 mins)
      7,748

    Jan Exum
    Newest Member
    Jan Exum
    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

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.