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Next Step After Saliva Gliaden Iga Test?

Amyand2girls

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Amyand2girls Rookie
Amyand2girls
Posted

Hi! I'm new here...I'm not new to the gluten-free diet because my four and a half year old started on it right before her third birthday, as a way to try to help her sleep. She had received a diagnosis of high functioning autism. The diet worked wonders (casein free, too) and now people would never guess she had that diagnosis. I was on the diet for about 5 months as well. About 3 months ago, though, I heard about NAET treatments and talked to some people who spoke glowingly about how these things had helped their child and even allowed them to go off the diet. We hate the diet here. So we went to this practitioner and eventually we were told she was "all cleared" and could eat gluten and casein. We let her eat them and she did not have her "old" symptoms, which included waking up screaming in the middle of the night, crying, "My feet hurt! My feet hurt!" So we were very hopeful that this energy therapy had worked. Then I noticed she was getting shadows under her eyes (even when using enzymes)...and they have continued to worsen, though she sleeps fine and has not changed behaviors. It is clear to me that she is ill...I think it's the gluten.

I have chronic migraines I'm trying to get under control and the doctor I went to had me do a saliva test...I didn't know that the test included checking for IgA gliaden...and my score was 62. So, obviously, I reacted to wheat gluten. But I have several questions:

1. How do I know if I react to barley, rye or oats? I would hate to avoid them my whole life if I don't have to. Even just barley would open the door to a ton more foods.

2. I'm still on gluten...I know I should go ahead and get checked for celiac, but I'm still uncertain if I should just order something from on-line (like that rapid check that is $99 for celiac, 10 minute result) or try to get my doctor to test me for celiac...I find it odd that he didn't suggest we do that after seeing the score.

3. Does a higher number mean a worse case? The little instructions said that if the score was above 14 but under 30, a person should stop eating gluten for 3-6 months and then add it back in on a rotational basis every 5th to 7th day. And it said over 30, just never eat gluten again. But everything I have read on gluten-free sites say that there is no "just a little bit of" gluten intolerance. You are or you arent. Does my score of 62 mean I'm "super sensitive" or just that my body makes a lot of antigens?

4. I just turned in the saliva test for my daughter-- it'll take 2 weeks to get those results back. In the meantime, I feel intense pressure to get whatever tests we need to do done, so I can get her (and me) back off of gluten.

What should I do next? I KNOW the gluten free diet seriously helped my daughter. I was gluten free for about 5 months, though, and my headaches didn't change. My adrenal score was all lower than average, like 1 point away from adrenal fatigue, so I'm wondering if my system would just take longer to clear the gluten? (I was also deficient in Vit D)

So many things I've been reading have made so much sense. I think I will need to do this diet, but I have this driving need to find out for sure: celiac? And "rye, barley and oats off limit, too?"

I'm considering the Optimum Research Lab cdSCAN Celiac Disease and Gliaden intolerance test, which includes:

Screening Profile IgA, IgG, IgM, tTG (tissue) Transglutanime and Autoanitbody IgA gluten. Any comments?

They also offer a IgG ELISA Food intolerance Test that tests both gliaden and gluten and 9 other grains. It's $379. But at least I'd have a test for ALL gluten. This feels very necessary for me.

And, (finally nearing the end, I promise), I got the name of a nutritional specialist who told me that sometimes people react to gluten because their adrenal system is so messed and once you heal the adrenal system, for some people, they will be able to eat gluten. That sounds...wrong to me, but I'm not a nutritional specialist. She claimed to have heal a girl of celiac...is she just making stuff up? After our disappointing journey through NAET, I'm much more skeptical this time around.

Other symptoms I have that match some of what I've read, just to give you a better picture:

nightmares all growing up and into adulthood (always of being chased and hunted)

stomach bloating, mostly at night

skin issues that began in college

chronic migraine headaches, the worst of my symptoms, averaging two per 10 days the last 12 years.

I don't have a lot of the digestive symptoms, except the occasional bloating

infertility for 5 years (and endometriosis)

difficulty carrying babies to term

foggy mind

chronicly tired

clinical depression

inability to sleep deeply

extremely jumpy and anxious

So...I tried to call my regular GP to ask for the celiac panel and the secretary referred me to a gastroenterologist. I asked for another check on my adrenals-- and was told to go to an endocronologist. Do I need to go to these specialists? Or could my primary care doctor who is the one who gave me the saliva test, okay to go to if I just tell him, "Here are the tests I need."

I apologize for the long post from someone new to the board, but this is all a relevation to me... I'm trying to come to grips with what this gliaden score means for my life. I've read back on many old posts, and that was very helpful. Thank you!

Amy

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LizMonte Newbie
LizMonte
Posted

If you're looking for a definitive test, check out www.enterolab.com. They do genetic testing for the gluten sensitivity genes, and they have also developed a stool analysis test for gluten antibodies that is more sensitive than blood tests. This is because most of the immune response to gluten takes place in the gut.

I just got a definitive diagnosis with the genetic test. I have MS, but no particular digestive symptoms so far.

Liz

Lisa Mentor
Lisa
Posted
I just got a definitive diagnosis with the genetic test.

Liz

I may be incorrect, but according to what I understand, if you posses the appropriate genes, it does not give you a diagnosis. It can indicate that you may be predisposed to Celiac Disease, but it does not diagnose you with Celiac Disease. If you carry the Celiac gene, does not mean that you will develop Celiac. Perhaps, that is what you mean. :)

Lisa Mentor
Lisa
Posted

Hi Amy and welcome to this site!

You can ask your doctor to order the Serelogic Panel:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You must remain on gluten for the test. You certainly have many of the symtoms of Celiac.

Hope this helps.

Amyand2girls Rookie
Amyand2girls
Posted
  • Author
Hi Amy and welcome to this site!

You can ask your doctor to order the Serelogic Panel:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You must remain on gluten for the test. You certainly have many of the symtoms of Celiac.

Hope this helps.

Yes, it does, thanks. I'll take that list with me tomorrow when I see the doctor. I've been enjoying lots of gluten, realizing that it will probably be coming to an end soon.

Thanks for such a great support network here!

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