Just A Little Bit Celiac?

[SunnyDyRain]

So I was so excited 3 monthes ago when I was daignosed with Celiac that I didnt' get the actual test results. My doc told me I had a positive celaic test and I should go gluten free.

So today i go back for my follow up, and I ask for my results so I can compare... and I am disapointed in myself for having such low levels. My IgA was 6 (negitive 0-4), and IgG was 9 (negitive 0-9) So on one test i'm only slightly elevated and the second i'm just barely negitive?

I know it doens't mean I'm only a little bit Celaic, but does that tend to lend to i'm not as sensitive to gluten as other celiacs? Could this mean that I can handle foods processed in same lines without problems?

I was not gluten free prior to the tests, I was eating a subway hogie 3-4 times a week, pasta at least once a week. Chinese once a week.... cake, cookies.... only way I limited myself that If I was going somewhere when i needed to not run to the bathroom, I didn't eat a high wheat dinner, but it would only be that night.

Anyone like me with only slighly elevated levels? Any isights? comments? Anything?

I thought I was going to be really high...

[Ursa Major]

You had an autoimmune response to gluten. Your results may only indicate that your villi weren't totally destroyed yet. As has been noted before, it is irrelevant how high your test scores are. If you have elevated levels, you are every bit as much of a celiac as the person with really high levels.

You had the symptoms, and I assume you got better without gluten. That is the only thing that matters. Those blood tests are not very reliable anyway!

[DarkIvy]

Well, lots of peoples' bloodwork comes back negative or only "slightly positive". I've read that it can depend on a lot of things... how long in advance one was actually eating gluten, how much gluten was actually taken in, how long one was gluten free before the challenge, genetics... I've read a few times that in rare cases some people just don't produce the antibodies much at all even if they are celiac. They can test completely 100% negative on the blood but be very, very celiac.

How were you diagnosed before? Just through dietary response? Or did you have other bloodwork? I'd say if you had other bloodwork that showed more sensetivity, trust those. Having gone gluten free for a period of time will effect new bloodwork, sometimes even if you do a gluten challenge. Mine all came up completely negative. I can't tell you if I'm an "actual" celiac because I'm still waiting for biopsy results, but what does it matter, really? There's already celiac in the family, I have all the symptoms, and they all clear up when I'm not eating gluten. If you know you felt better off of gluten, then really that's what counts. I think my GI is something of a jerk, but even he admitted that if it's not celiac, it's gluten intolerance and I should not be eating gluten anyway.

I'm starting to think that bloodwork is basically useless. There are plenty of cases of false negatives, along with a lot of "slightly positive" cases that don't make any sense. Obviously, there's no such thing as a "slight celiac"... one may not respond to gluten so accutely, but celiac is celiac and one must avoid gluten TOTALLY in both cases, so it's not like the distinction means anything.

In any case, if gluten is giving you symptoms again, you've already got your diagnosis.

[Sandi]

i was confused at my results and was just one point above normal and people said I wasnt GS and all i know Gluten makes me sick and I am confused too

sandi

[sixtytwo]

So totally in agreement with DarkIvy..........I had negative bloodwork, but positive with Enterolab and boy, when I eat gluten, do I get sick now. I think it is getting worse and I am 62 and just started eating gluten-free three years ago. I have a granddaughter who was diagnosed with celiac at age one--she was classic and blood tested plus the biopsy (she is nine now) and my mother was positively diagnosed at 88 after having a former blood test come back negative. The true test is: if you eat gluten and get sick, then don't eat gluten and don't get sick----------you have it. Can't get a lot more simple than that and call it what you want, celiac or gluten intolerance-------you have it and you must avoid it all. Barbara

[happygirl]

Your dr. didn't order the full Celiac panel....didn't have the Total IgA, tTG, and EMA, which (the last two) are the "newer/better" Celiac tests...so you might have scored fully positive on those...you'll never know since your dr. didn't run the full test while you were eating gluten.

[SunnyDyRain]

How were you diagnosed before? Just through dietary response? Or did you have other bloodwork? I'd say if you had other bloodwork that showed more sensetivity, trust those. Having gone gluten free for a period of time will effect new bloodwork, sometimes even if you do a gluten challenge. Mine all came up completely negative. I can't tell you if I'm an "actual" celiac because I'm still waiting for biopsy results, but what does it matter, really? There's already celiac in the family, I have all the symptoms, and they all clear up when I'm not eating gluten. If you know you felt better off of gluten, then really that's what counts. I think my GI is something of a jerk, but even he admitted that if it's not celiac, it's gluten intolerance and I should not be eating gluten anyway.

I'm starting to think that bloodwork is basically useless. There are plenty of cases of false negatives, along with a lot of "slightly positive" cases that don't make any sense. Obviously, there's no such thing as a "slight celiac"... one may not respond to gluten so accutely, but celiac is celiac and one must avoid gluten TOTALLY in both cases, so it's not like the distinction means anything.

In any case, if gluten is giving you symptoms again, you've already got your diagnosis.

That was my only diagnosis testing. Was eating gluten scince birth before them. Only avoiding pasta and stuff occasionally. i'm kinda bummed now that I didn't get the full panel, but i'm not going to go back on gluten. i can't say i have gotten a huge improvment either. I still have to work on finding what ever foods are making me sick.... gluten isnt the only one.

[Ursa Major]

That was my only diagnosis testing. Was eating gluten scince birth before them. Only avoiding pasta and stuff occasionally. i'm kinda bummed now that I didn't get the full panel, but i'm not going to go back on gluten. i can't say i have gotten a huge improvment either. I still have to work on finding what ever foods are making me sick.... gluten isnt the only one.

I see in your signature that you have been gluten-free only three months. That is not enough time to really be well by a long shot. Also, being intolerant to raw veggies won't be forever. After eliminating gluten from my diet it took me six months before I could even tolerate a small amount of raw carrots or green salad again, and I wasn't able to tolerate vitamins for at least that long.

Raw veggies would give me stomach cramps and diarrhea, and vitamins would cause awful stomach cramps. I am fine with both now (nearly two years after going gluten-free), even though I think I'll have to limit raw veggies forever, I still can't eat a lot of them.

[Guest Doll]

While it is true that ALL people (non-Celiac) create small levels of antibodies to the food we eat, anything above normal range does indicate an abnormal autoimmune response to gluten. In some people, that range may wax and wane. If you read my "What triggered Celiac for you?" post, I posted a Pub Med article that shows that Celiac antibodies may disappear in some, even while still eating gluten. This only makes sense considering what we know about autoimmune diseases, they often go through periods of "flares" and remission.

Also, for reasons unclear, antibodies levels ARE correlated with the amount of intestinal damage (TtG and EMA), but they are NOT correlated with someone's symptoms. Someone can have very high antibodies and damage and no symptoms, and vice versa.

If you react to gluten, and have a positive result, I think it's fair to say you have Celiac.

Of course, if you only react once in awhile, and/or there could be other things you are reacting to, you might want to go for a biospy. It might be that you are reacting slightly to ALL foods, and that gluten is not really causing you any intestinal damage. You might have an "over-reactive" immune system (i.e. multiple allergies) but not actually Celiac Disease. Your EMA and Ttg bloodwork results usually indicate the degree of intestinal damage.

Either way, if you feel better gluten free, go for it.

The only reasons I like to push for a proper DX is:

1.) You might have another disorder that needs other treatment, and cutting out otherwise healthy foods will not help. You're just going to keep elimating foods from your diet and not getting any better, because there is another cause to your symptoms.

2.) In your case, if you have Celiac (which I think you likely do), you need a positive Dx to be able to claim your gluten free food on your taxes (I do), enter research studies, and make sure you get gluten free meals and prescriptions in the event that you ever need to be hospitalized, etc. It just makes it that much easier.

I would get all copies of your positive test results, and stick with the gluten free diet. If your symptoms return or do not improve, consider further testing and work with your doctor.

[SunnyDyRain]

I see in your signature that you have been gluten-free only three months. That is not enough time to really be well by a long shot. Also, being intolerant to raw veggies won't be forever. After eliminating gluten from my diet it took me six months before I could even tolerate a small amount of raw carrots or green salad again, and I wasn't able to tolerate vitamins for at least that long.

Raw veggies would give me stomach cramps and diarrhea, and vitamins would cause awful stomach cramps. I am fine with both now (nearly two years after going gluten-free), even though I think I'll have to limit raw veggies forever, I still can't eat a lot of them.

I have been known to be impatient...!

I know I am a long way from healed, especially as i have thought back to my probable trigger - 10 years ago. It is completely unrealistic to expect to reverse 10 years in 3 months... but I still lack energy and have lots of GI problems still that I can't nail down to what did it. I am starting to cement that me and careegeean are enemies and that is being banned from my diet now.

I have noticed now that I am eating veggies with just oil and vinegar and not with a dairy or gluten dressing, I am tolerating more veggies, but still green leafy and hard carrots, celery ones are not entirely digested and they still cause loose bowel, but not the "get the heck out" reaction. I am glad i'm not the only one with a problem with vitamins, I checked my vits, both gluten and casien free, but I still get cramps, infact I stopped taking them thinking the company lied and they do have some gluten or casien in them.

[SunnyDyRain]

While it is true that ALL people (non-Celiac) create small levels of antibodies to the food we eat, anything above normal range does indicate an abnormal autoimmune response to gluten. In some people, that range may wax and wane. If you read my "What triggered Celiac for you?" post, I posted a Pub Med article that shows that Celiac antibodies may disappear in some, even while still eating gluten. This only makes sense considering what we know about autoimmune diseases, they often go through periods of "flares" and remission.

Also, for reasons unclear, antibodies levels ARE correlated with the amount of intestinal damage (TtG and EMA), but they are NOT correlated with someone's symptoms. Someone can have very high antibodies and damage and no symptoms, and vice versa.

If you react to gluten, and have a positive result, I think it's fair to say you have Celiac.

Of course, if you only react once in awhile, and/or there could be other things you are reacting to, you might want to go for a biospy. It might be that you are reacting slightly to ALL foods, and that gluten is not really causing you any intestinal damage. You might have an "over-reactive" immune system (i.e. multiple allergies) but not actually Celiac Disease. Your EMA and Ttg bloodwork results usually indicate the degree of intestinal damage.

Either way, if you feel better gluten free, go for it.

The only reasons I like to push for a proper DX is:

1.) You might have another disorder that needs other treatment, and cutting out otherwise healthy foods will not help. You're just going to keep elimating foods from your diet and not getting any better, because there is another cause to your symptoms.

2.) In your case, if you have Celiac (which I think you likely do), you need a positive Dx to be able to claim your gluten free food on your taxes (I do), enter research studies, and make sure you get gluten free meals and prescriptions in the event that you ever need to be hospitalized, etc. It just makes it that much easier.

I would get all copies of your positive test results, and stick with the gluten free diet. If your symptoms return or do not improve, consider further testing and work with your doctor.

I figured that I had a proper Dx, with the blood test, but here I find I only got half of them, and I've been gluten-free for 3 monthes... I don't think I would go back on gluten for a challenge unless somehow I had no other responsibilties like work or anything and I could spend time in the bathroom all day. I am also terrified of the idea of seeing a GI. Any thing more invasive than a blood draw really brings out a huge anxiety attack. I know these are all excuses, but they are the major reasons my GP's half assed celiac diagnosis was good enough for me, though I understand other people may need more from me. I just really hope I start to feel better, and that if needed my Dx stands up when needed, and dosen't bar me from anything (like health insurance) when I don't want it.

Why can't life be simple?

[chrissy]

which IgA test did they do? antigliadin, Ttg, or EMA?

[grey]

SunnyDyRain,

I have a hard time w/ vitamins too... I ended needing vitamins by IV. After Ursa Major's suggestion on another thread, I cut out raw veggies - I'd been eating more even after going gluten-free (healthy!) - but that was an enormous help. So I'm seconding her advice! Some fruit - peaches, watermelon, is ok for me too. I'm also not tolerating the acid of vinegar yet (ok in things, but not directly).

IMHO, patience is one of the hardest parts. I've had symptoms for 15 years, with "flares" and I just want to be better NOW. I'm trying to focus on the tiny improvements and remind myself to REST a lot. It's hard to overcome internalizing the outside thoughts (or worry about them) that 'you're lazy' for fatigue, but taking care of yourself is key.

One other thought - I'm glad I had the endoscopy/biopsy - it helps me be patient, reminding myself of the state of my poor gut. I'm a little confused on your status (did you do a gluten trial)? But if you want to know more about your gut, the endo. meds knock you out before they get near you with the various devices. It feels less invasive than most med exams!

best,

grey

I have been known to be impatient...!

I know I am a long way from healed, especially as i have thought back to my probable trigger - 10 years ago. It is completely unrealistic to expect to reverse 10 years in 3 months... but I still lack energy and have lots of GI problems still that I can't nail down to what did it. I am starting to cement that me and careegeean are enemies and that is being banned from my diet now.

I have noticed now that I am eating veggies with just oil and vinegar and not with a dairy or gluten dressing, I am tolerating more veggies, but still green leafy and hard carrots, celery ones are not entirely digested and they still cause loose bowel, but not the "get the heck out" reaction. I am glad i'm not the only one with a problem with vitamins, I checked my vits, both gluten and casien free, but I still get cramps, infact I stopped taking them thinking the company lied and they do have some gluten or casien in them.

[Guest Doll]

I figured that I had a proper Dx, with the blood test, but here I find I only got half of them, and I've been gluten-free for 3 monthes... I don't think I would go back on gluten for a challenge unless somehow I had no other responsibilities like work or anything and I could spend time in the bathroom all day. I am also terrified of the idea of seeing a GI. Any thing more invasive than a blood draw really brings out a huge anxiety attack. I know these are all excuses, but they are the major reasons my GP's half assed celiac diagnosis was good enough for me, though I understand other people may need more from me. I just really hope I start to feel better, and that if needed my Dx stands up when needed, and dosen't bar me from anything (like health insurance) when I don't want it.

Why can't life be simple?

Hey, I ask myself the same question! It is always possible that your intestines are still very inflamed, and thus still reacting to *any* type of food you put in there. If you only had "half of" the required bloodwork, there is a very good chance that you do have Celiac, and you may have some severe intestinal damage. Do you know if a TtG or EMA test was done? Either way, it usually takes some time to heal. Although some feel better as soon as they cut out the gluten, others take up to a year (sorry!) to get back to feeling 100% better. In rarer cases, some people never heal 100%, and still exhibit some symptoms. There is also evidence to suggest that about half of all Celiacs on the gluten-free diet continue to have abnormal intestinal villi. No one knows if this is due to trace gluten exposure that just can't be avoided, if they are not able to regenerate the villi, or if there is constant low-grade autoimmunity even on the diet. No one knows. That's the bad news, and I have to give it to you because I think the more people know, the better off they are.

BUT, the good news is that the odds are in your favor for at least feeling better. The vast majority of people DO get better with time on the gluten-free diet. It's like losing weight....there is no magic fix, just lots of dedication and time. It may not be the answer anyone wants, but it is what it is.

I think staying on the diet is the right thing to do. If you do not want further Celiac testing, that is 100% up to you. However, there are valid reasons why an official Dx is helpful if you have access to obtain one. Furthermore, if you *do not* have Celiac and/or have another health problem, you need to find that out.

BUT, if you do not show *ANY* signs of improvement after say, a month or become *more* symptomatic or develop other issues, please see your doctor before you just cut out any foods. You could have another inflammatory bowel condition like Crohn's or Colitis. That is why people like me who don't hate doctors always suggest that you need to find a good one who will help you get to the root of the problem.

For some people, this is an Naturopathic doctor. I personally suggest making sure that an *MD* rules out all "serious" illnesses first (bowel cancer, Crohn's, etc.) and that a person can switch over to an ND if nothing is found. Some people with allergies/intolerances etc. find that ND's work for them. I do not have any personal experience with this area, but I am sure that someone on this board can help you more.

Right now, take it easy on your intestines. You might want to do the BRAT diet (with gluten-free toast of course!). You may also want to only eat any processed foods that are "allergen free" and not just "gluten free". If you smoke, this may impair healing.

I would also make sure you look into the thyroid issue, *especially* since you have been already diagnosed and treated for it. You should follow this up.

Hang in there!

[little d]

So I was so excited 3 monthes ago when I was daignosed with Celiac that I didnt' get the actual test results. My doc told me I had a positive celaic test and I should go gluten free.

So today i go back for my follow up, and I ask for my results so I can compare... and I am disapointed in myself for having such low levels. My IgA was 6 (negitive 0-4), and IgG was 9 (negitive 0-9) So on one test i'm only slightly elevated and the second i'm just barely negitive?

I know it doens't mean I'm only a little bit Celaic, but does that tend to lend to i'm not as sensitive to gluten as other celiacs? Could this mean that I can handle foods processed in same lines without problems?

I was not gluten free prior to the tests, I was eating a subway hogie 3-4 times a week, pasta at least once a week. Chinese once a week.... cake, cookies.... only way I limited myself that If I was going somewhere when i needed to not run to the bathroom, I didn't eat a high wheat dinner, but it would only be that night.

Anyone like me with only slighly elevated levels? Any isights? comments? Anything?

I thought I was going to be really high...

SunnyDyRain

I was disappointed in all my test too, I was sooooo sure that my test was all positive and when they all came back negative I was so mad that I started eating regular food again and I figured that I would make something come back positive when I had my Pillcam done which I think that I messed up somehow I don't know how I think that I did some how, anyway the more I ate regular food again the more the symptoms came back. But since then I have started eating gluten free again and feeling better until I messed up on Waffles that I thought were gluten-free I ate them and now I have what I think is DH very itchy, blisters, very dry, scaly skin after the pop so now I am more convinced that I hav celiac disease or intolerance. I am going to a Dermatologist on Friday in hopes that she knows her stuff about DH, and I don't think that my rash is going anywhere any time soon, they tend to last for a least a month at a time.

donna