Positive W/ Enterolab But Not Going gluten-free Because.....

[joyfulmommyofmany]

My two daughters were tested positive through enterolab about 2 years ago for gluten and dairy. Their results were the same and they were very mild like 21 is all. Normal being under 10. It was soooo much work going gluten-free and they weren't having many symptoms so I stayed eating gluten becuase I didn't really believe the tests or reliability of Enterolab. While one of my daughters isn't showing symptoms my other daughter has gas, bloating, constipation/diarhea, VERY short, canker sores, naseau and severe emotional outbursts. But.... they don't seem consistant and don't necessarily happen after eating gluten. Seems like there is no rhyme nore reason. I am thinking of doing gluten-free again but its so expensive and so much work and I am really wondering about Enterolab and maybe its a hype?

My husbands two sisters are full blown celiac by biopsy and blood tests. My 2nd cousin is celiac by biopsy so we have it on both sides. Blood test results for my daughters were negative (which is why I didn't really do gluten-free long because I chose to believe the doctors test over enterolab.

Anyone have comments about Enterolab? is eating gluten when they are only mildly elavated ok? because it doesn't seem to bother one of my daughters and not sure about the other. Are these reliable tests? I am very skeptical!!! I gave the results to my naturepath and he didn't really blink an eye since Enterolab isn't well published.

I am wondering about other intolerances as well. Where would I get testing for that? Should I do further testing through maybe saliva so I can back up the tests through enterolab?

Thanks a bunch for any help I am new to this.

[domesticactivist]

Why don't you get your daughter tested for celiac with blood tests? She has classic symptoms.

[Skylark]

Hi and welcome.

Did you and your daughters have TTG on Enterolab or only anti-gliadin? As you mention, on the Enterolab website there is data showing that anti-gliadin shows up in 30% of the healthy people they test. Fecal anti-gliadin is pretty consistently elevated in people with celiac disease, which is why some people find it useful. The other reason people find Enterolab useful is that it can confirm their suspicion of non-celiac gluten intolerance, which can make you very sick even though blood & biopsy are normal. TTG from Enterolab is more of a concern because it's an autoimmune antibody. Especially in your symptomatic daughter I would take Enterolab TTG very seriously.

Blood testing is the other way around. A person can have serious villous damage and a completely negative celiac panel. The blood tests give false negatives about 30% of the time. Biopsies are hit and miss as well, since damage can be patchy and some doctors only take 3 or 4 samples from the whole small intestine. On top of that, there is no indication at all of non-celiac gluten intolerance using traditional blood & biopsy testing. Gluten intolerance can still cause malabsorption to the point of anemia, low calcium, and poor growth and trigger thyroid inflammation and autoimmunity.

I would be very concerned about your symptomatic daughter. The canker sores, short stature, GI problems, and outbursts are very typical of celiac or gluten intolerance and it runs in your husband's side of the family. A lot of us had seemingly random reactions on gluten. Sometimes eating gluten is fine and sometimes you run for the bathroom after a bowl of pasta. On the board we think it's because your immune system is trying to cope with the constant onslaught of gluten. A lot of people find that once they're off gluten their immune system functions more normally and gluten reactions become more consistent and sometimes stronger.

If I were you, I would aggressively try to get your symptomatic daughter blood tested and biopsied, then take her off gluten for at least six months no matter what the results are to check for gluten intolerance. The Enterolab results are one clue, her family history a second, and her obvious celiac symptoms a third. You may see big improvements in her health, which is well worth the expense of the gluten-free diet. If she is celiac, or gluten-intolerant enough to have some malabsorption she may grow up with short stature, weak bones, and possibly other autoimmune diseases if she stays on gluten.

[kareng]

I agree with Skylark.

Just because her blood test was negative 2 years ago, doesn't mean it won't be positive now. She may not have had enough antibodies get into the blood yet. I would ask to get a copy of those blood tests, too. We have had people on here who have been told they had a negative blood test and the right tests weren't run or the results were positive. Many or most doctors know very little about Celiac so you really need to check up on them.

[joyfulmommyofmany]

Why don't you get your daughter tested for celiac with blood tests? She has classic symptoms.

Her blood tests were negative.

[joyfulmommyofmany]

I agree with Skylark.

Just because her blood test was negative 2 years ago, doesn't mean it won't be positive now. She may not have had enough antibodies get into the blood yet. I would ask to get a copy of those blood tests, too. We have had people on here who have been told they had a negative blood test and the right tests weren't run or the results were positive. Many or most doctors know very little about Celiac so you really need to check up on them.

Thanks ladies! I didn't know I could test again for blood thats good to know. Her symptoms seem to get worse as she gets older. She acts sort of like she has blood sugar issues too! And goes pee ALLLLLL the time! ANd pees the bed.

She had TTG and IGA done with enterolab. both positive TTG was more positive but still low enough to wonder if it was reliable. I do not want to see her with the healthy problems my mom and sister have. They have never been dx with celiac but they have SEVERAL autoimmune issues and I really believe are at least gluten intolerance. The doctors can't find out why they are so sick. If there is a symptom they have it!! Thyroid, arthritis, weight gain, canker sores, diahrea, vomiting, severe adema, disk degeneration in spine, very low D3 and anemia, both are under 5 ft and I could literally go on and on. You wouldn't believe it! Both are on heavy duty meds with not enough diagnosis.

I am going to talk to her naturpath and see what he says again. I was thinking of getting the york lab testing done. I think its saliva? or redo of Enterolab. In addition to the blood tests again.

Thanks so much for your support. I can't believe how hard it is to dx this!!

[Skylark]

I'm not sure it's worth the money to redo Enterolab or chase down York lab. The information is interesting, but her symptoms really tell the story. With both anti-gliadin and TTG fecal IgA plus obvious symptoms, your daughter REALLY needs to be off gluten. There isn't as much data in PubMed about fecal TTG but the few bits & pieces I've turned up suggest that the positive fecal TTG is much more concern than anti-gliadin and can indicate an inflammatory process like celiac or Crohn's. With the celiac in the family and anti-gliadin IgA it's almost certain that gluten is the issue.

There is no harm getting celiac bloodwork again to see if it's changed. I still think you should push for a biopsy if you can get one fairly fast while she is still eating gluten. Then take her off gluten and don't look back!

Your mom and sister sound like gluten could be their issue as well. I would strongly suggest you try the diet as well. You may be pleasantly surprised how good you feel off gluten.

[joyfulmommyofmany]

I'm not sure it's worth the money to redo Enterolab or chase down York lab. The information is interesting, but her symptoms really tell the story. With both anti-gliadin and TTG fecal IgA plus obvious symptoms, your daughter REALLY needs to be off gluten. There isn't as much data in PubMed about fecal TTG but the few bits & pieces I've turned up suggest that the positive fecal TTG is much more concern than anti-gliadin and can indicate an inflammatory process like celiac or Crohn's. With the celiac in the family and anti-gliadin IgA it's almost certain that gluten is the issue.

There is no harm getting celiac bloodwork again to see if it's changed. I still think you should push for a biopsy if you can get one fairly fast while she is still eating gluten. Then take her off gluten and don't look back!

Your mom and sister sound like gluten could be their issue as well. I would strongly suggest you try the diet as well. You may be pleasantly surprised how good you feel off gluten.

Thanks sooo much for your advice! I will talk to my naturpath about getting her tested and then go gluten-free after those are done~ I do not want her to go through what my mom and sister are going through. My sister sees an endocronologist next week and I told her which tests to get for celiac. I am almost certain she has it. Her son has ALL the symptoms and bipolar!! he is homeless now and I wonder how different it would have been if he was gluten-free from the beginning. His symptoms were SEVERE!!

Wish doctors were more serious about gluten intolerance or celiac.

I will ask for biopsy but since she hasn't been in and out of the dr's I doubt that he would do it.

[Roda]

I agree with the other posters. I just wanted to share my kids' stories.

I think my youngest son(he is almost 7) has had celiac since he was a baby. We just didn't know it then. I was diagnosed when he as almost 4, and by that time he "seemed" healthy and was doing well. His celiac bloodwork was negative then. Fast forward 1 1/2 years and he started having random symptoms and like your daughter, didn't seem consistant. So I took him to a new allergist to explore food allergies/intolerences and to rescreen for celiac. Two years from his first celiac blood test(he was almost 6) he had another screening and his IgA tTG was positive. We did not do a biopsy. It's been one year since he went gluten free and it has been amazing. He is doing so well now and has grown 4" since he was diagnosed.

I also have an older son(almost 11) who has had his own various issues. I had him screened when I was diagnosed also. I have had him screened three more times since then. Everything is very negative on him. I toyed with the idea of putting him gluten free for around two years. I even had people on here encouraging me to try it. I did not because of the overwhelming negative evidence in his tests. In August of this year I took him for a scope to check in case he was a seronegative celiac. Negative also. Due to his issues he was having and his stalled growth(his brother is 4 years younger and after his major growth spurt gluten free I had a hard time telling their clothes apart) I decided to try him on the diet. You want to know what my regret is? Not trying it sooner! He no longer has the issues he was having prior, has gained 5+ pounds since August and is starting to grow! I think it was starting to bother him that he was one of the smallest in the 5th grade.

[joyfulmommyofmany]

Roda thanks for sharing your story!!! I am definately going to have her retested and if negative maybe retest through enterolab just to see if more damage has been done with the TTG test. Thanks for your support.

[Skylark]

Roda thanks for sharing your story!!! I am definately going to have her retested and if negative maybe retest through enterolab just to see if more damage has been done with the TTG test. Thanks for your support.

Blood TTG does not correlate very well with the amount of damage, let alone fecal. You would need to have her biopsied for that.

[joyfulmommyofmany]

Blood TTG does not correlate very well with the amount of damage, let alone fecal. You would need to have her biopsied for that.

Would the test read a higher number though? or does the number not really matter. Hers was 19 and normal is 10 and under so it really wasn't all that high!! Which is why I was thinking its no biggie and probably didn't need to go gluten-free.

Thanks again for all your advice. I am new to all this.

[Skylark]

Would the test read a higher number though? or does the number not really matter. Hers was 19 and normal is 10 and under so it really wasn't all that high!! Which is why I was thinking its no biggie and probably didn't need to go gluten-free.

Thanks again for all your advice. I am new to all this.

No, the test doesn't necessarily read a higher number for more damage.

[Roda]

Would the test read a higher number though? or does the number not really matter. Hers was 19 and normal is 10 and under so it really wasn't all that high!! Which is why I was thinking its no biggie and probably didn't need to go gluten-free.

Thanks again for all your advice. I am new to all this.

My youngest son's tTG was 16 with > 15 positive. So he was only one number over being positive. I have no idea if he would have had any visible damage or not since we did not do a biopsy. He reacts terrible when he injests gluten. We got his 1 yr blood work back and I'm happy to report that it is now negative at a 2!

[nora-n]

about the sisters with all the health problems, if they take any steroids for the other issues, the celiac tests will show negative despite them being gluten sensitive.

[pricklypear1971]

about the sisters with all the health problems, if they take any steroids for the other issues, the celiac tests will show negative despite them being gluten sensitive.

Really?

How long does the steroid effect last?

Wow, the more I learn the more I'm convinced I wouldn't have tested positive if I'd done it. Maybe the Hashis would have helped boost the scores but otherwise it sounds like I'd be neg all around (steroids, DH, neuro, no GI symptoms except d).

[nora-n]

I do not know for how long, but steroid effects usually last three weeks, and then the gluten damage has to start building up after that, in order to start getting positive on tests...

I did take some low dose steroids too back then when I got ill from gluten, and I guess I tested negative for that reason too.

They use steroids to treat those with refractory celiac too (bad cases of celiac) because it helps

[pricklypear1971]

I do not know for how long, but steroid effects usually last three weeks, and then the gluten damage has to start building up after that, in order to start getting positive on tests...

I did take some low dose steroids too back then when I got ill from gluten, and I guess I tested negative for that reason too.

They use steroids to treat those with refractory celiac too (bad cases of celiac) because it helps

I had two steroid shots and a week of prednisone 2 months prior to starting gluten-free. Hmmm...

They say the shots can stayaffective 3-6 months.

[nora-n]

Yes, that would mess with diagnosis.

[pricklypear1971]

Yes, that would mess with diagnosis.

So I guess I'll stop wondering "what if"....

Still debating on eating sushi, cheesecake and souffle again and going in for a skin biopsy to see if it's DH....