Anyone Gone gluten-free To Prevent Celiac?

[mamafish]

My family is lousy with autoimmune disorders.  And now I think we have celiac diagnoses sweeping through the family.  I just did a family tree marking confirmed diagnoses, people already wheat or gluten-free and feeling better, and people with clear GI symptoms.  The *only* people left standing amongst my 1st and 2nd degree relatives are me and my two kids.

 

I've tested me and my daughter (my son is autistic and we'd need to sedate him, so haven't done that yet).  We're normal IgA, negative tTG, waiting on the IgG-DGP test.  No obvious GI symptoms, but my daughter fell off the growth charts at a year old (50th percentile to off the bottom in less than a year), and she's recently developed scalp psoriasis.  My son is autistic, which could be a symptom all by itself.  I have no symptoms I can point to, and I went off gluten when nursing my son for 8 months, and went back on with two slices of pizza with no noticeable issues at all.  But my ferritin is 9 and my vitamin D is low, neither should be on our diet.  And I have low thyroid symptoms, even with normal panels.  In other words, I can see things that might be gluten related - just no smoking guns.

 

The thing is, I'm not scared of gluten-free.  And I'm wondering if it's just dumb to continue eating gluten, even if we don't have obvious symptoms/diagnosis right now, and even if being on the diet doesn't result in noticeable changes.  The pattern in my extended family is very clear - lots of celiac/gluten intolerance, and lots of autoimmune issues (some of them really awful - I wouldn't wish Anklosing Spondylitis on anyone).  My concern is that if we keep eating gluten, it's probably a matter of "when" does one of us get celiac, rather than "if".  And more scary, by eating gluten and not seeing the celiac developing fast enough, we could maybe trigger one of the other autoimmune issues running rampant in our genetics.

 

Anyone else who has looked at lousy family genetics and gone gluten-free to prevent/slow celiac and other autoimmune problems?  Am I crazy?

[shadowicewolf]

My family is lousy with autoimmune disorders.  And now I think we have celiac diagnoses sweeping through the family.  I just did a family tree marking confirmed diagnoses, people already wheat or gluten-free and feeling better, and people with clear GI symptoms.  The *only* people left standing amongst my 1st and 2nd degree relatives are me and my two kids.

 

I've tested me and my daughter (my son is autistic and we'd need to sedate him, so haven't done that yet).  We're normal IgA, negative tTG, waiting on the IgG-DGP test.  No obvious GI symptoms, but my daughter fell off the growth charts at a year old (50th percentile to off the bottom in less than a year), and she's recently developed scalp psoriasis.  My son is autistic, which could be a symptom all by itself.  I have no symptoms I can point to, and I went off gluten when nursing my son for 8 months, and went back on with two slices of pizza with no noticeable issues at all.  But my ferritin is 9 and my vitamin D is low, neither should be on our diet.  And I have low thyroid symptoms, even with normal panels.  In other words, I can see things that might be gluten related - just no smoking guns.

 

The thing is, I'm not scared of gluten-free.  And I'm wondering if it's just dumb to continue eating gluten, even if we don't have obvious symptoms/diagnosis right now, and even if being on the diet doesn't result in noticeable changes.  The pattern in my extended family is very clear - lots of celiac/gluten intolerance, and lots of autoimmune issues (some of them really awful - I wouldn't wish Anklosing Spondylitis on anyone).  My concern is that if we keep eating gluten, it's probably a matter of "when" does one of us get celiac, rather than "if".  And more scary, by eating gluten and not seeing the celiac developing fast enough, we could maybe trigger one of the other autoimmune issues running rampant in our genetics.

 

Anyone else who has looked at lousy family genetics and gone gluten-free to prevent/slow celiac and other autoimmune problems?  Am I crazy?

There is no guarantee that you will develop it though. A good percentage of the population of the US, for example, carry the genes for celiac (about 30%). Of those, a small number actually develop it (1% is the number i have heard the most).

[mamafish]

There is no guarantee that you will develop it though. A good percentage of the population of the US, for example, carry the genes for celiac (about 30%). Of those, a small number actually develop it (1% is the number i have heard the most).

 

Yup.  But the risk goes up a lot with one first- or second-degree relative with celiac, and it's looking like I will have a lot of them (and no one seems to have done studies on whether that increases risk - if anyone knows of one, I'd love a link).  There are very few people in my family without at least one autoimmune disease, so I've always been very careful in situations like illness or chronic allergy or inflammation (all identified as potential autoimmune triggers).  Gluten's actually a pretty easy one to remove.

First step I think is to get us all tested before we go off gluten (we've done most of that already).  Second is to watch for more subtle symptoms improving in the 3-6 months after we go off.  Either a diagnosis or symptom improvement would definitely cement my suspicions that gluten is a bad idea for us.

I'm trying to balance the risk of unnecessary dietary changes with possible avoidance of beginning/continuing an autoimmune cascade for my kids.  There's so little information out there to help...

[NoGlutenCooties]

If you try going gluten-free and there's no improvement in any symptoms - or if you don't have any symptoms to begin with - then there really is no point in going gluten-free.  If you feel better when you don't eat gluten then listen to your body and don't eat gluten.  That said, you should continue to get the bloodtest on a regular basis (i.e. with your annual physical) - because you can develope Celiac and be asymptomatic and not even know it.  (Which is exactly what happened to me - I only got tested because it is in my family.)

 

Another thing to keep in mind - apparently the bloodtest isn't as accurate as one would hope it would be.  If it comes back negative, there's only about a 70-some-odd-percent chance that you are in fact negative.  However, if it comes back positive, the test is about 97-98% accurate.  I don't know if the false-negative is just because the idiots in the medical profession consider a number "under 11" to be negative though... when you get the bloodtest done, ask for the actual number not just the doctor's opinion about whether it is positive or negative.  Anything over a 3 is positive (for the antibody IGA test).  You're just not sick enough for the medical folks to admit it.  (some on here may disagree - there are varying opinions about what the numbers mean)

[mamafish]

Yup, from what I've read and the opinions of docs presenting at celiac/endo conferences, the blood tests have a big false negative rate for people with silent/latent/potential/early celiac.  One doc explained it to me like this.  It's kind of like cancer - they used to detect it at stage III/IV, when patients were already really sick/affected.  Now they can detect many cancers really early, before patients realize anything is wrong.  He said that with celiac, we're still detecting it late, because there's no good agreement on what "early" celiac looks like - but a patient can still have bad things going on that early.  He says that in my case, he'd take *any* positive antibody test very seriously, or a collection of symptoms that would indicate growing malabsorption/autoimmune issues.

So I have a bunch more tests happening now (this doc sadly can't treat me directly, he's in research, not clinical practice, but he gave me a list to take to my family doc to order).  A DXA scan (he says that often celiacs present with osteopenia/porosis, and if I, at 43, have that, then with my family history he'd be very suspicious.  Also testing thyroid/Hashi's and I already know D and ferritin are low (doing a full iron panel as well).  He said that he can't "diagnose" without a positive biopsy, but he can tell me unofficially that if I have a collection of metabolic/absorption/immune issues that often congregate with celiac, a gluten free trial is in order, and then testing those numbers again in 6-12 months.  He said if they improve, with my family history, he would retroactively assume sub-clinical/early celiac, no matter what the antibody tests said (and to either trial gluten-free with my kids and watch symptoms very carefully, or to test them very regularly).

[NoGlutenCooties]

Yup, from what I've read and the opinions of docs presenting at celiac/endo conferences, the blood tests have a big false negative rate for people with silent/latent/potential/early celiac.  One doc explained it to me like this.  It's kind of like cancer - they used to detect it at stage III/IV, when patients were already really sick/affected.  Now they can detect many cancers really early, before patients realize anything is wrong.  He said that with celiac, we're still detecting it late, because there's no good agreement on what "early" celiac looks like - but a patient can still have bad things going on that early.  He says that in my case, he'd take *any* positive antibody test very seriously, or a collection of symptoms that would indicate growing malabsorption/autoimmune issues.

So I have a bunch more tests happening now (this doc sadly can't treat me directly, he's in research, not clinical practice, but he gave me a list to take to my family doc to order).  A DXA scan (he says that often celiacs present with osteopenia/porosis, and if I, at 43, have that, then with my family history he'd be very suspicious.  Also testing thyroid/Hashi's and I already know D and ferritin are low (doing a full iron panel as well).  He said that he can't "diagnose" without a positive biopsy, but he can tell me unofficially that if I have a collection of metabolic/absorption/immune issues that often congregate with celiac, a gluten free trial is in order, and then testing those numbers again in 6-12 months.  He said if they improve, with my family history, he would retroactively assume sub-clinical/early celiac, no matter what the antibody tests said (and to either trial gluten-free with my kids and watch symptoms very carefully, or to test them very regularly).

 

That's a great explanation.  Sounds like you found one of the few docs who "get it" and are actually concerned about your overall health, not just what the clinical studies have been able to definitively prove.  He's a keeper. 

BTW... I also have osteopenia - was first tested at 40 after begging and pleading with the doctor because of family history.  I'm only 42, and recently diagnosed with Celiac.  So I'm hoping that now that I'm gluten-free I'm still young enough to rebuild some bone.

[mamafish]

That's a great explanation.  Sounds like you found one of the few docs who "get it" and are actually concerned about your overall health, not just what the clinical studies have been able to definitively prove.  He's a keeper. 

BTW... I also have osteopenia - was first tested at 40 after begging and pleading with the doctor because of family history.  I'm only 42, and recently diagnosed with Celiac.  So I'm hoping that now that I'm gluten-free I'm still young enough to rebuild some bone.

Sadly he's in research.  I'd happily get on a plane to go see him otherwise ;-P.  But he was hugely helpful in walking me through how I might sort out celiac likelihood before I am sick enough to test positive.  Like he said, if other things in your body are going awry, get a baseline.  If going off gluten fixes them...  someday that will get people an official diagnosis, but I don't need that.  I just want to be doing the right things for me and my kids.

His suggestion on the osteopenia/porosis (while making clear this isn't his specific area of expertise) was to go gluten-free for 3 months to start healing (including getting off any other foods that might be a problem - dairy/corn/soy/etc), and then to get aggressive on:  weight-bearing exercise, a diet rich in calcium (ideally dairy because it's easier to absorb, but only if you can tolerate it - I don't have problems with dairy as far as I know), and vitamin D supplements to get D levels into the top half of your lab's normal range.  And for me, to make sure I'm eating a diet that doesn't make my estrogen nuts (I know how to do this - I have endometriosis), and to make sure my thyroid is behaving.  He thinks that in someone with mild-moderate gut damage who is premenopausal, that should usually reverse the osteopenia.   

[NoGlutenCooties]

 He thinks that in someone with mild-moderate gut damage who is premenopausal, that should usually reverse the osteopenia.   

 

You just made my day.     I sooo hope he's right.  I've been doing the calcium thing and the weights for quite some time - and I caught the Celiac early before my Vit D and other levels were low, so I'm hoping I have enough time to get this turned around before I'm in full-on menopause.  I'm only 42, but I'm already getting the pre-menopausal symptoms - although pretty mild so far.  My mother was also all done with everything at 45. 

[mamafish]

You just made my day.     I sooo hope he's right.  I've been doing the calcium thing and the weights for quite some time - and I caught the Celiac early before my Vit D and other levels were low, so I'm hoping I have enough time to get this turned around before I'm in full-on menopause.  I'm only 42, but I'm already getting the pre-menopausal symptoms - although pretty mild so far.  My mother was also all done with everything at 45. 

I'm 43.  I'll race you to the weights .

[NoGlutenCooties]

I'm 43.  I'll race you to the weights .

 

You're on! 

[answerseeker]

Yup, from what I've read and the opinions of docs presenting at celiac/endo conferences, the blood tests have a big false negative rate for people with silent/latent/potential/early celiac. One doc explained it to me like this. It's kind of like cancer - they used to detect it at stage III/IV, when patients were already really sick/affected. Now they can detect many cancers really early, before patients realize anything is wrong. He said that with celiac, we're still detecting it late, because there's no good agreement on what "early" celiac looks like - but a patient can still have bad things going on that early. He says that in my case, he'd take *any* positive antibody test very seriously, or a collection of symptoms that would indicate growing malabsorption/autoimmune issues.

So I have a bunch more tests happening now (this doc sadly can't treat me directly, he's in research, not clinical practice, but he gave me a list to take to my family doc to order). A DXA scan (he says that often celiacs present with osteopenia/porosis, and if I, at 43, have that, then with my family history he'd be very suspicious. Also testing thyroid/Hashi's and I already know D and ferritin are low (doing a full iron panel as well). He said that he can't "diagnose" without a positive biopsy, but he can tell me unofficially that if I have a collection of metabolic/absorption/immune issues that often congregate with celiac, a gluten free trial is in order, and then testing those numbers again in 6-12 months. He said if they improve, with my family history, he would retroactively assume sub-clinical/early celiac, no matter what the antibody tests said (and to either trial gluten-free with my kids and watch symptoms very carefully, or to test them very regularly).

I agree. I think drs need to get the whole picture. My diagnosis was a difficult one. Having been on prednisone during testing I got false negatives. Most drs would have stuck with that and sent me on my way. But I found a great GI. He looked at my malabsorption, the fact that I was already diagnosed with GERD, my rash, even my asthma sending me to the hodpital more than once was a symptom, and my bone scan which showed osteopenia at age 40. My calcium was really low when they took bloodwork in the ER but the docs just wrote it off because they said calcium drops when your struggling to breathe. I am so thankful for my GI or I would still be sick and still be getting the run around! He monitored me and I ended up with celiac diagnosis 3 months later.

[answerseeker]

Make sure your getting the whole celiac panel when you test, especially the children. My insurance changes in Jan and I'm getting my children retested. Kaiser only does the ttg test.

I edited this post. I posted a link to an article about this in the testing board

[mamafish]

Make sure your getting the whole celiac panel when you test, especially the children. My insurance changes in Jan and I'm getting my children retested. Kaiser only does the ttg test.

I edited this post. I posted a link to an article about this in the testing board

 

Yup, we ran everything we could.  tTG was negative, but IgA was low normal for both me and my daughter.  Waiting on the IgG-DGP now.  Couldn't get EMA done, unfortunately.  We'll be trialing gluten-free no matter what the tests say, but I wanted to run them first where we could.