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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

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

      Anti-endomysial Antibody (EMA) Testing

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

  • 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

    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      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
      @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!
×
×
  • 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.