Is It Celiacs Or Gluten Intolerance? What Is Silent Celiacs?

[GFSFVegan]

Hi there! This is my first post so bare with me if I ramble!! Its been a long journey trying to get a definitive answer from the doctors, and well... lets just say some have been less than helpful. I was wondering if anyone out there could help shed some light....

We all had the EnteroLab stool tests done a few months back. My sons and I game back positive for Antigliadin IgA & Antitissue Transglutaminase IgA. No surprise there, we started gluten-free diet before the results came back & had been feeling great. (Its a relief to see my sons doing better esp. since their ped was in denial that anything was going on with them.) My sons & I came back positive for dairy, soy, eggs & yeast as well. Which kind of wasn't a surprise but we were hoping our suspicions would be wrong.

My 2 1/2 year old had bloodwork, it came back negative. His symptoms were mostly GI (never had a solid BM) with some behavioral problems & his growth slowed down. My other son had reflux early on and after solids were introduced he had rashes/hives/excema, GI troubles (very questionable BMs after eating gluten). To this day he still hasn't slept through the night all though there has been great improvement since gluten was removed from his & my diet. Both boys are tall (started in the 90th% but then dropped down to 75th% in height) and skinny (25th% in weight). I know others have gone threw much, much worse with their kids and my heart goes out to you!! We were lucky that they appeared to be healthy but it made it EXTREMELY difficult to talk to their doctor about them and it was hard watching them start to go down hill. My symptoms were I guess what you'd call neurological in nature (hair loss, migraines, no sense of smell (until gluten-free!!), OCD) then I became pregnant with #2. Then the digestive issues started, which of course I thought was just the pregnancy until they stuck around after wards. My bloodwork & biopsy were negative. The GI said I had reflux & gastritis with damage to my esophagus & intestinal lining. Celiac is negative. At our follow up he looked a little shocked when I told him I was feeling better on a gluten-free diet and tried to talk me out of following one, "the difficult" restrictions would leave me with little options. Yeah ok Doc!! I didn't feel comfortable with the diagnosis, I looked gastritis up online and the causes didn't fit at all. He did a biopsy for h.pylori, which to me could have been the only explanation based on what I read online, and it came back negative. I had pretty bad heartburn when I was pregnant and for a little bit after wards, so the damage to the esophagus could be reflux. I told myself it didn't matter, gluten-free was working & the EnteroLabs confirmed gluten intolerance. I was worried about the damage, but assumed it would heal in time esp with gluten-free diet. The naturopathic doc I saw recently, for for yeast & other gluten related issues, said a positive tTG means intestinal damage and that I probably had celiacs. He said that the damage could be somewhere else in the intestines which could result in the negative biopsy or it could be early & the damage isn't severe enough. I kinda suspected that to be the case since my symptoms changed to a more digestive nature and got worse during my second pregnancy, esp since I only gave my body a 10 month break between pregnancies.

So am I Celiac?? So does intestinal damage mean Celiac disease and not gluten intolerance?? And does that mean my sons, who also have more GI symptoms as well are Celiac? It would certainly help explain why our systems are so out of whack and why more yeast & food intolerances keep appearing. (We got tested for allergies and the allergist confirmed the food troubles are not allergies) I'm not going to do any further testing for them esp since it really didn't give me a definitive answer. Doctors all seem to have different answers.... I know that ultimately it doesn't matter, gluten-free diet is helping us either way & we've committed to it for life, it just drives the OCD in me crazy not having a straight answer and raises other questions.

Then there is my husband....We're not really sure if he has symptoms or not. We thought he was getting headaches, sore throat & gout flare ups b/c of gluten but it wasn't consistent and so we thought maybe he had a mild yeast problem as well...

His EnteroLab results were an 8 for Antigliadin IgA & an 11 Antitissue Transglutaminase IgA. He does have 1 celiac gene (DQ2 I'm guessing, not really sure that's our next question) so would he be a "silent" Celiac? His tTG wasn't very high, but doesn't mean there is an autoimmune disorder & intestinal damage???? His dairy & soy came back positive too, so I think that could explain intestinal damage, right? He'll be gluten-free at home but he travels for work a lot, and not sure if he should be gluten-free while traveling or not.

Thanks for listening and any help on interpreting some of this stuff is appreciated!!!

[lizard00]

We all had the EnteroLab stool tests done a few months back. My sons and I game back positive for Antigliadin IgA & Antitissue Transglutaminase IgA. No surprise there, we started gluten-free diet before the results came back & had been feeling great. (Its a relief to see my sons doing better esp. since their ped was in denial that anything was going on with them.)

As I'm sure you know, Enterolab cannot diagnose celiac or gluten intolerance. There's a lot of discussion on this forum about Enterolab's testing, but if you are having success with the gluten-free diet, then perhaps you're on the right track.

My 2 1/2 year old had bloodwork, it came back negative. His symptoms were mostly GI (never had a solid BM) with some behavioral problems & his growth slowed down. My other son had reflux early on and after solids were introduced he had rashes/hives/excema, GI troubles (very questionable BMs after eating gluten). To this day he still hasn't slept through the night all though there has been great improvement since gluten was removed from his & my diet.

Testing in children is very inconclusive, they often don't have either enough damage to show or they don't yet produce enough of the antibodies. He is genetically at risk, even if it's a small percentage to develop celiac. That doesn't mean that he is going to, but it's a chance. Unfortunately, at that age, it's often hard to diagnose until their health is severly compromised. If it's working, his ped cannot argue that.

My bloodwork & biopsy were negative. The GI said I had reflux & gastritis with damage to my esophagus & intestinal lining. Celiac is negative. At our follow up he looked a little shocked when I told him I was feeling better on a gluten-free diet and tried to talk me out of following one, "the difficult" restrictions would leave me with little options. Yeah ok Doc!! I didn't feel comfortable with the diagnosis, I looked gastritis up online and the causes didn't fit at all.

They told me I had gastritis too. I couldn't quite figure out why I had it either. It's kind of a catch-all. Did they test your total IgA serum? Mine is very low, so my tests could only be negative.

So am I Celiac?? So does intestinal damage mean Celiac disease and not gluten intolerance?? And does that mean my sons, who also have more GI symptoms as well are Celiac?

The only true way to know about intestinal damage would be through an endoscopy.

Then there is my husband....We're not really sure if he has symptoms or not. We thought he was getting headaches, sore throat & gout flare ups b/c of gluten but it wasn't consistent and so we thought maybe he had a mild yeast problem as well...

His EnteroLab results were an 8 for Antigliadin IgA & an 11 Antitissue Transglutaminase IgA. He does have 1 celiac gene (DQ2 I'm guessing, not really sure that's our next question) so would he be a "silent" Celiac? His tTG wasn't very high, but doesn't mean there is an autoimmune disorder & intestinal damage???? His dairy & soy came back positive too, so I think that could explain intestinal damage, right? He'll be gluten-free at home but he travels for work a lot, and not sure if he should be gluten-free while traveling or not.

He does have symptoms. BUT, until he recognizes them as symptoms, they're not to him. If he's gluten-free at home, and if he's celiac, he will be able to tell the difference if he eats gluten on the road. My #1 symptom of being glutened is a nasty headache.

That was long... hope that I was able to help you a little bit. Welcome to the forum!

[GFSFVegan]

Thanks for the info! Its all been a little confusing and all the docs seem to have different opinions. It makes discussing it with our families kinda hard. Its like (their perspective, not ours ) if its not a "disease" then its not really a problem and tests & doctors will give you the correct answer. Luckily we've found (finally) a good doctor who agrees its definitely gluten intolerance and is aware of the damage it can cause.

I think my husband decided its not worth the risk of possibly doing damage, nor does he want to get sick while on the road, so he's going to stay gluten-free too. He's been so preoccupied with us being sick that I think it took him a little bit to realize he might be having symptoms too.

As I'm sure you know, Enterolab cannot diagnose celiac or gluten intolerance. There's a lot of discussion on this forum about Enterolab's testing, but if you are having success with the gluten-free diet, then perhaps you're on the right track.

Testing in children is very inconclusive, they often don't have either enough damage to show or they don't yet produce enough of the antibodies. He is genetically at risk, even if it's a small percentage to develop celiac. That doesn't mean that he is going to, but it's a chance. Unfortunately, at that age, it's often hard to diagnose until their health is severly compromised. If it's working, his ped cannot argue that.

They told me I had gastritis too. I couldn't quite figure out why I had it either. It's kind of a catch-all. Did they test your total IgA serum? Mine is very low, so my tests could only be negative.

The only true way to know about intestinal damage would be through an endoscopy.

He does have symptoms. BUT, until he recognizes them as symptoms, they're not to him. If he's gluten-free at home, and if he's celiac, he will be able to tell the difference if he eats gluten on the road. My #1 symptom of being glutened is a nasty headache.

That was long... hope that I was able to help you a little bit. Welcome to the forum!