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

Iga Positive - Always Celiac? Or Just Sensitivity?

bjshad

Recommended Posts

bjshad Apprentice
bjshad
Posted

Hi - I have a very general question - My DD who is three had a stool test with Enterolab that came back positive for IgA anti-gliadin antibodies - she scored a 62. Is the production of IgA antibodies to gluten simply mean she's having an immune system response, not necessarily celiac, but an immune response nonetheless?

I'm trying to figure out if I want to persue an actual diagnosis. We had taken her off gluten because she is on the autism spectrum and she was being weaned off gluten (about 95% gluten free) at the time of Enterolabs test. We were planning to give gluten free a good, honest try as a therapy and being very strict about the diet - doing it the proper way. But I wanted to have some proof that it was a good thing to do, so I ordered the Enterolab test, and it came back positive. So now I'm not sure what to do. I don't want to put her back on gluten (just for the sake of another test) because she's had a very positive response to the diet - her speech is improving, her asthma is clearing up (and it was VERY BAD for awhile there), her skin looks less blotch and rashy. Main thing - her speech! Much more complex thoughts and speech than when she's on gluten.

So should I persue a diagnosis or just keep her on the diet? Does is matter? Thanks for any and all opinions. Just not sure what to do.

Beth

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

Celiac.com Sponsor (A8-M):


lob6796 Contributor
lob6796
Posted
Hi - I have a very general question - My DD who is three had a stool test with Enterolab that came back positive for IgA anti-gliadin antibodies - she scored a 62. Is the production of IgA antibodies to gluten simply mean she's having an immune system response, not necessarily celiac, but an immune response nonetheless?

I'm trying to figure out if I want to persue an actual diagnosis. We had taken her off gluten because she is on the autism spectrum and she was being weaned off gluten (about 95% gluten free) at the time of Enterolabs test. We were planning to give gluten free a good, honest try as a therapy and being very strict about the diet - doing it the proper way. But I wanted to have some proof that it was a good thing to do, so I ordered the Enterolab test, and it came back positive. So now I'm not sure what to do. I don't want to put her back on gluten (just for the sake of another test) because she's had a very positive response to the diet - her speech is improving, her asthma is clearing up (and it was VERY BAD for awhile there), her skin looks less blotch and rashy. Main thing - her speech! Much more complex thoughts and speech than when she's on gluten.

So should I persue a diagnosis or just keep her on the diet? Does is matter? Thanks for any and all opinions. Just not sure what to do.

Beth

It is my understanding that a positive IgA means Celiac for sure. A negative IgA doesn't mean she doesn't have Celiac (since some are IgA defiecient). So I would say yes, she has Celiac disease and you could approach official diagnosis through her pedi. That said, you don't NEED a diagnosis to go gluten free with her. In fact, a gluten free diet (with or without Celiac) is recommended for children with autism anyway. So if she's doing good, you could just go strictly gluten free knowing that she does have Celiac, and that you are helping to improve the symptoms from that and the autism spectrum. Good luck :)

Rachel--24 Collaborator
Rachel--24
Posted
So should I persue a diagnosis or just keep her on the diet? Does is matter? Thanks for any and all opinions. Just not sure what to do.

Beth,

In my opinion most autistic kids will do much better on a gluten-free/cf diet. I would keep her on the diet if she were my child. She may not have Celiac but still....its my understanding that "leaky gut" is very common with kids on the spectrum.

If she has leaky gut (and I dont doubt that she does given the fact that speech is improving) she will be reactive to gluten regardless of whether or not she has Celiac.

Yes...with Enterolab's IgA testing there is an immune response to gluten but its not Celiac in every case. I have leaky gut and similar issues that are commonly found in autistic kids.....my Dr.'s treat Atuism so I have learned quite a bit from them and from my own research.

I do not have Celiac and would never test positive for it in traditional bloodtests or biopsies...I'm not genetically susceptible....however, it doesnt make the immune response any less serious.

Your daughter may very well have Celiac.....it would be impossible to determine that w/out having her back on gluten for a few months and then tested. In this case I dont think the "official" diagnosis matters much. Her launguage skills are improving and this is a clear indication that she is benefiting from not having gluten in her diet. For this reason I would keep her on the diet as if she were diagnosed Celiac.

We were planning to give gluten free a good, honest try as a therapy and being very strict about the diet - doing it the proper way. But I wanted to have some proof that it was a good thing to do, so I ordered the Enterolab test, and it came back positive.

The diet really does help kids on the spectrum. Yes....I do think its a good thing that you're doing and I hope that you continue.

With regards to Enterolab...the test cant determine whether or not your child has Celiac. It can only identify a sensitivity to gluten. I dont consider the test to be diagnostic....nor do they claim to diagnose Celiac. Many people, myself included, can become gluten intolerant due to leaky gut and other problems in the gut so its hard to know what the true cause is with Enterolab results.

The main thing is that there is an immune response occurring and that your daughter is improving on the diet. I would stick with it for sure. :)

There is much evidence that the kids on the spectrum benefit from not having gluten and casein opiates passing through the gut and into the bloodstream.

Even if you pursued a Celiac diagnosis and she was found not to have it...I wouldnt say she *just* has a sensitivity. Since the gluten is impairing her speech...I think its safe to say that she has leaky gut and the opiates from gluten can have quite an affect on the brain...not unlike a powerful drug. She will most likely have much better brain function on a gluten-free/cf diet.

Have you read much about the gluten-free/cf diet and autism??

If you are interested I can provide you with some links.

Good luck...hope she continues to improve her laungauge skills. :)

Guest j_mommy
Guest j_mommy
Posted

Getting an "official" Diagnosis is a personal choice. If she's improving amd moving ahead is it worth it to set her back???

If I were in your position...I would just continue the diet, b/c as mentioned above she would have to back on Gluten to get a good diagnosis through a physician.

Maybe when she's older you could get the offical one...maybe give her the choice of doing so(in a couple of years of course).

I wish you the best of luck!!!

I'm a huge supporter of "Living Gluten free for dummies by Dana Korn and "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green they are great resources!

bjshad Apprentice
bjshad
Posted
  • Author

Thanks for the advice everyone - I appreciate it. She definitely has leaky gut. She was on round after round of antibiotics and had yeast overgrowth as a result until this past February when we figured out milk was causing her ear infections - since then, she's had only one after a cold that only needed topical antibiotic drops with no resulting fungal infection in her ear, which is a miracle! She was getting infections every 2-3 weeks for the past year or two, I kid you not. We finally took her to a differenet ENT who cultured her ear discharge (why didn't anyone do that before?!) and found out her infections were fungal, not bacterial. Her naturopath said she most likely has leaky gut and she definitely has all the symptoms of that. And with her autism spectrum issues - the Enterolab test was just the "nail in the gluten coffin".

We're going to keep her completely off gluten - I think when she's old enough to make a choice, if it becomes an issue, then we'll think about doing a gluten challenge and going for a diagnosis, but whether or not she has actual celiac or not - she definitely has reactions to gluten. And she has a positive stool test to it as well, so I'm positive it's the right thing to do.

As a matter of fact, I have issues with gluten myself. Since going gluten free (we're doing it as a family, unless my oldest daughter is out or DH is out and wants something with gluten), my "aches and pains" are better - I thought I seriously had chronic fatigue syndrome or fibromyalgia until I went off gluten. Now I'm off it completely as well and if I get "glutened", I start to ache again. And I have gastro issues as well. I actually think both DD and I were glutened yesterday. We went to church and I have a feeling she snuck something she wasn't supposed to have - I need to deal with that issue because it's happened before - it's DD - she'll sneak food before anyone notices - and later in the day, DD had explosive - no nice way to say it - diarhhea and it had "that smell" to it. So I definitely know she has gluten issues. No doubt in my mind.

Anyway, thanks for all the help - I appreciate it.

Beth

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

      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....
    4. 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!
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      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...
  • 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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      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!
×
×
  • 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.