Question About Gliadin Iga Result

[Galixie]

Forgive me if I am asking a question that has already been answered elsewhere, but I am confused about what it means when you test positive on Gliadin IgA but negative on everything else (which included TT IgA, Gliadin IgG, Reticulin IgA Autoabs, Endomysial IgA Autoabs, and endoscopic byopsies).

 

I do understand that I don't have celiac, but does the positive Gliadin IgA result mean anything? Also, if it is a low positive, does it matter less? My result was 1.40 with the range noted as: < or = .90 is Negative, .91 to 1.09 is Equivocal, > or = to 1.10 is positive.

 

The tests were done back in 2010 and, at the time, my doctor was a little stumped at my odd result. But she didn't seem to think the one positive result indicated anything. I was so happy about not having celiac that I didn't really think much about this result at the time. Now I'm trying to get a better understanding of it and would appreciate some input.

[GottaSki]

 

I do understand that I don't have celiac, but does the positive Gliadin IgA result mean anything? Also, if it is a low positive, does it matter less? My result was 1.40 with the range noted as: < or = .90 is Negative, .91 to 1.09 is Equivocal, > or = to 1.10 is positive.

 

 

Welcome Galixie!

 

How do you know you do not have Celiac Disease?  The positive Gliadin IgA does mean something. 

 

If you are still ingesting gluten, I highly recommend a new complete celiac antibody panel.

 

tTG-IgA (Tissue Transglutaminase)

tTG-IgG

EMA-IgA (Endomysial)

DGP-IgA (Deamidated Gliadin Peptide)

DGP-IgG

 

AGA-IgA -- I'm not clear if your positive Gliadin IgA was the AGA-IgA or DGP-IgA -- probably good to have your doctor run both.

[frieze]

I don't think that is a low positive....was a serum IgA run?

[GottaSki]

I agree...positive is positive.  Larger positive numbers do not necessarily correlate to more intestinal damage and vice versa.

[Galixie]

I can't seem to get quoting to work but to answer the question about how I know I don't have celiac: The doctor who ran the blood tests explained to me that she would expect TT IgA and Gliadin IgG to be high in the case of celiac. The fact that they weren't, coupled with the letter from the gastroenterologist explaining that the biopsies were also negative for celiac (which was considered the definitive test at the time), was the reason I was told that I don't have it.

 

I am fairly certain it was an AGA IgA test that was run, because it was four years ago and my doctor doesn't always switch to the newest version of tests right away. Serum IgA wasn't run.

 

At the time, we were looking for the explanation to some vitamin deficiencies I was experiencing. No explanation was found. A couple of years ago I discovered that I suffer from a mild form of anemia caused by inflammation. The source of the inflammation is still unknown, and that is what brought me back to this one positive result which I couldn't make heads or tails of.

 

I went off of gluten almost a month ago. I haven't noticed any effects so far, but I realize that can take time so I plan to stick with it for 3 or 4 months to see if I notice any difference.

 

I'm not too keen to go back to the doctor and ask her to rerun celiac tests. She would just point out that I have already tested negative for it.

 

I guess I have been hoping that the Gliadin IgA result was as not-important at my doctor made it sound so that I could give up on my experiment early. Thank you all for your help.

[GottaSki]

I can't seem to get quoting to work but to answer the question about how I know I don't have celiac: The doctor who ran the blood tests explained to me that she would expect TT IgA and Gliadin IgG to be high in the case of celiac. The fact that they weren't, coupled with the letter from the gastroenterologist explaining that the biopsies were also negative for celiac (which was considered the definitive test at the time), was the reason I was told that I don't have it.

 

I am fairly certain it was an AGA IgA test that was run, because it was four years ago and my doctor doesn't always switch to the newest version of tests right away. Serum IgA wasn't run.

 

At the time, we were looking for the explanation to some vitamin deficiencies I was experiencing. No explanation was found. A couple of years ago I discovered that I suffer from a mild form of anemia caused by inflammation. The source of the inflammation is still unknown, and that is what brought me back to this one positive result which I couldn't make heads or tails of.

 

I went off of gluten almost a month ago. I haven't noticed any effects so far, but I realize that can take time so I plan to stick with it for 3 or 4 months to see if I notice any difference.

 

I'm not too keen to go back to the doctor and ask her to rerun celiac tests. She would just point out that I have already tested negative for it.

 

I guess I have been hoping that the Gliadin IgA result was as not-important at my doctor made it sound so that I could give up on my experiment early. Thank you all for your help.

 

Perhaps a doctor change?

 

She was incorrect about what a positive AGA means, which is not uncommon now and was very common four years ago.

 

My advice remains...return to eating gluten and have a full celiac antibody panel run after you have been back on gluten for at least six weeks -- twelve would be better.

 

My opinion stems from watching many folks live in diagnosis limbo.  I, myself went undx'd for nearly 44 years because good doctors were not educated properly regarding celiac disease and non-celiac gluten sensitivity wasn't even on the radar.

 

Hang in there and keep looking for the correct answers : )

[Galixie]

I do have another question: I am still really confused about the difference between aga-IgA and aga-IgG tests. I gather that one of them is more specific to a gluten sensitivity than the other, but I'm totally confused about which is which. If the IgG test is the one that is more reliable, what is the IgA test used for?

 

I don't quite understand what I've read about these tests. With the names being exactly the same except for one letter, I find the literature really hard to follow. I am hoping someone can explain it to me in plain english so that it actually makes sense.

[GottaSki]

I do have another question: I am still really confused about the difference between aga-IgA and aga-IgG tests. I gather that one of them is more specific to a gluten sensitivity than the other, but I'm totally confused about which is which. If the IgG test is the one that is more reliable, what is the IgA test used for?

 

I don't quite understand what I've read about these tests. With the names being exactly the same except for one letter, I find the literature really hard to follow. I am hoping someone can explain it to me in plain english so that it actually makes sense.

 

It is not a matter of one being "better" than the other.  Different bodies produce different levels of antibodies.  There is not one perfect celiac antibody test.  The DGP - both IgA and IgG based were not available when you were last tested. 

 

It is best to have all of the celiac antibody panel done, not just one -- especially because you had one positive four years ago...a lot can change in one's body in four years.

[GottaSki]

Welcome Galixie!

 

How do you know you do not have Celiac Disease?  The positive Gliadin IgA does mean something. 

 

If you are still ingesting gluten, I highly recommend a new complete celiac antibody panel.

 

tTG-IgA (Tissue Transglutaminase)

tTG-IgG

EMA-IgA (Endomysial)

DGP-IgA (Deamidated Gliadin Peptide)

DGP-IgG

 

AGA-IgA -- I'm not clear if your positive Gliadin IgA was the AGA-IgA or DGP-IgA -- probably good to have your doctor run both.

 

 

This is a plain as it gets...hand this list to your doctor -- or not.

 

Good luck to you

[nvsmom]

That reticulin test you had done is one of the oldest tests. It's not used often anymore because other better tests came out.

 

Your positive anti-gliadin IgA antibody test (AGA IgA) is also and older test and not that reliable, but it caught you!  I agree that your result is quite positive - you are close to double the normal upper limit.  

 

That test  is thought by some to show celiac disease and non-celiac gluten intolerance (NCGI) in some people. Most doctors just accept it as a celiac disease test. I know of no other health problems that could cause a positive result.

 

The deaminated gliadin peptides (DGP) tests are newer and weren't used much 4 years ago.

 

This report has more info on the tests: Open Original Shared Link

 

As I understand it, the difference between the IgA and IgG based tests is which part of the immune system it is using.  The IgA deals with the mucosal linings (mouth, small intestine) so it makes sense that it's a good celiac disease test. The IgG tests use a part of the body that is more overall - systemic - and is the main part immunoglobulin in our bodies. It's just less specific to an area.

[Galixie]

Thank you for the replies. They're very helpful.

 

Here is another question that I've been trying to understand: How do the antibodies of gliadin IgA differ from the TT IgA antibodies? I know the TT IgA antibodies indicate an autoimmune response. If I understand correctly (which I probably don't) the gliadin IgA antibodies don't indicate an autoimmune response.

 

The reason I'm asking is because anemia of inflammation is usually brought on by infections, liver or kidney problems, cancer, or autoimmune conditions. I've been able to rule out everything except an autoimmune condition as the cause of my anemia. But if non celiac gluten sensitivity isn't an autoimmune condition, then it can't be the underlying cause I'm looking for. I'm basically trying to figure out if the presence of only gliadin IgA antibodies would cause enough inflammation to trigger anemia of inflammation.

[Galixie]

Just to update: I'm still trying to figure out the answer to my last question about whether gliadin IgA antibodies could trigger an autoimmune response. I have a good naturopath who is working with me to figure out the mystery of where my (very mild) anemia of inflammation is stemming from.

 

I've been back on gluten for months. My original experiment only lasted 6 weeks because, after 4 weeks, my body started having some serious GI issues. When those didn't clear up after two weeks, I switched back to my regular diet (and it still took another week to get back to some semblance of 'normal').

 

In September I gave up dairy (which I probably should have done back in 2011 when I first found out I might have a problem with casein and whey).

 

This week I had blood drawn to get the celiac panel retested (among other things). Unfortunately, because of the holiday on Monday, my doctor wasn't too sure if my blood would actually get processed, so I may have to go get blood drawn a second time. Otherwise I'm just waiting for results.

 

I'm hoping this was just psychosomatic, but I made sure to have a big helping of pasta (in addition to the regular amount of gluten in my diet) the day before the draw. I felt fine the day of the draw, but the day after that I had gas and bloating worse than normal. If I hadn't specifically been trying to eat a large helping of gluten containing pasta, I probably would not have associated that meal with the GI distress two days later. They could be unrelated.

 

So, at this point, I'm hoping for negative test results because I'm really not keen to have to give up both gluten and dairy. But if it comes back positive I am willing to make changes for my own well being. More to follow.

[Gemini]

Just to update: I'm still trying to figure out the answer to my last question about whether gliadin IgA antibodies could trigger an autoimmune response. I have a good naturopath who is working with me to figure out the mystery of where my (very mild) anemia of inflammation is stemming from.

 

I've been back on gluten for months. My original experiment only lasted 6 weeks because, after 4 weeks, my body started having some serious GI issues. When those didn't clear up after two weeks, I switched back to my regular diet (and it still took another week to get back to some semblance of 'normal').

 

In September I gave up dairy (which I probably should have done back in 2011 when I first found out I might have a problem with casein and whey).

 

This week I had blood drawn to get the celiac panel retested (among other things). Unfortunately, because of the holiday on Monday, my doctor wasn't too sure if my blood would actually get processed, so I may have to go get blood drawn a second time. Otherwise I'm just waiting for results.

 

I'm hoping this was just psychosomatic, but I made sure to have a big helping of pasta (in addition to the regular amount of gluten in my diet) the day before the draw. I felt fine the day of the draw, but the day after that I had gas and bloating worse than normal. If I hadn't specifically been trying to eat a large helping of gluten containing pasta, I probably would not have associated that meal with the GI distress two days later. They could be unrelated.

 

So, at this point, I'm hoping for negative test results because I'm really not keen to have to give up both gluten and dairy. But if it comes back positive I am willing to make changes for my own well being. More to follow.

Hi Galixie......I hope this will help you understand all the confusing testing!

 

The Gliadin IgA and IgG testing checks for an autoimmune response to the proteins in wheat, barley and rye.  This is the test which checks to see if you are reacting to the food you eat on a daily basis.....gluten containing food.  The tTg IgA and IgG tests for damage to your small intestine and it can take awhile for enough damage to happen for it to show on blood work.  However, there are people who may test negative on blood work for tTg and then go on to have a very positive biopsy.  The blood work is immune system testing and it is not always perfect in who it catches.  The DGP test, which is the newer version of the AGA IgA/IgG testing, is more sensitive and used more commonly now.

 

As far as becoming symptomatic 2 days after eating a large gluten meal, that is more the norm than not, I am afraid.  In a true Celiac reaction, it takes time for the immune system to mount an attack after ingesting gluten and it is not uncommon for it to take 24-48 hours before you start to notice symptoms.  Sorry...I know you didn't want to hear that.  But I am gluten free and dairy lite, after 10 years diagnosis and really.......it is not hard to adjust once you start feeling better and it also doesn't mean you cannot have dairy forever.  I healed enough so I can tolerate small dairy hits and some people get dairy back in full.

 

FWIW.....I have never heard of anemia due to inflammation but then again, I do not have a white coat or a doctor's degree.  If you have Celiac symptoms as you described and are anemic, look hard at Celiac Disease because that is probably what it is.  I would still try a good long 6 month trial of gluten free even if testing doesn't provide many answers, just to see if it resolves your anemia.  Anemia and inflammation only get worse as time goes on and Celiac is one likely candidate when you suffer from these issues.  The GI distress you had after only 6 weeks gluten-free could very well be that you started noticing the dairy problem once gluten was removed from your diet. That's how it happened for me.  I was gluten-free for 2 years and then BAM!  I started having symptoms again and it was the damn dairy. All is good now and I am no longer that person with the gut problems. 

 

Have you considered gene testing to see if you carry one of the main Celiac genes?  That will at least tell you if you are pre-disposed for it.

 

Good luck!

[cyclinglady]

I am not an expert on exactly how celiac blood tests work and how to interpret them. I do want to share with you that anemia was my only symptom at the time of my diagnosis. I had low hemoglobin and low ferritin (iron stores) resulting in iron-deficiency anemia due to celiac disease. I also have a genetic anemia called Thalassemia which basically (for me) means little red blood cells that do not allow for enough oxygen thus impacting my hemoglobin. It was the genetic anemia which masked my iron-deficiency or alt least the doctors never looked beyond the genetic one.

I tested negative to all the tests in the complete celiac blood panel except the newer DPG IgA. That one was my only positive. I do not have an IGA deficiency. My intestinal biopsies revealed a Marsh Stage IIIB (moderate to severe damage).

I do not know why you ruled out celiac disease a year ago. I think you were advised to get another doctor.

Dairy or lactose intolerance (milk sugar) is common in celiacs due to damaged intestinal villi and is often regained but not always since most of the world becomes lactose intolerant as they age. You may have a casein and/or whey allergy, which I have in addition to a lactose intolerance too, but that impacts my nose with congestion, some minor eczema , and gut.

I am no doctor, but Gliadin antibodies should not trigger anemia of inflammation -- celiac disease would (as would other infectious diseases, autoimmune disorders, etc.). The very name Gliadin is gluten and the test (though old) that you took was testing for antibodies against gluten. It was positive and that means a strong possibility of celiac disease. The next step per all the experts is an endoscopy to obtain biopsies of the intestinal wall. That is considered the gold standard in diagnosing celiac disease. You stated that your biopsies were negative. How many were taken? The intestinal wall is vast -- like the size of a tennis court. So that is why many biopsies must be taken -- not just one or two. Not just a visual either.

I sure hope that the complete celiac panel was ordered as recommended by Gottaski this time for your sake.

I wish you well and hope you find your answers.

[Galixie]

Thank you Gemini and Cyclinglady.

 

I know that there is an autoimmune something going on. Trying to figure out what has been the challenge. The only way to deal with anemia of inflammation is to treat the underlying cause, so that's why I'm still searching.

 

I agree that the problems I had after going gluten free for a month were probably related to dairy. I don't think of it as an allergy because I don't have a severe reaction to it (I think of allergies as equaling hives and anaphylaxis), but the first things I noticed when I gave it up were an increase in energy and that my sinuses improved.

 

I'm such a finicky eater that the prospect of eliminating all things containing gluten along with dairy (which I suspect I won't ever get back) would severely limit the number of things I'm willing to eat. I can understand an attitude of 'just get over it' because it seems like a normal person would just adjust. However I have a history of simply not eating (anything... over extended periods of time) when faced with choices I find unappealing, so it is an actual problem for me. That's why the naturopath is of the let's-make-sure-this-is-really-the-problem mindset before I actually commit to it.

 

I know there were multiple duodenal and gastric biopsies during my upper endoscopy but I don't recall how many. About a year before that endoscopy I had tested positive for parietal cell antibodies, yet there were no signs of gastric atrophy either (which is good, but puzzling). Gluten sensitivity wouldn't affect parietal cell antibodies would it?

 

I was originally, back in 2008, told I have pernicious anemia because of my low B12 level and positive parietal cell antibody test. A year later I tested negative for both parietal and intrinsic factor antibodies and so was told that it couldn't be PA after all. I realize now that testing for PA is pretty unreliable. Unfortunately that really doesn't help me narrow down the actual culprit and leaves me wondering whether I have PA or not. Same thing with celiac.

 

If it is celiac, then going gluten free could potentially mean that I would not need to keep injecting B12 for the rest of my life. So that'd be a nice plus. Or I might have both problems, since autoimmune diseases seem to like to have company. That's not a fun thought.

Injecting B12 is really not that bad actually. I'd really like to find the cause of the anemia of inflammation though, because if I can't then I'll probably need iron injections and those are worse.

[Galixie]

Update (sort of):

I'm not really sure what happened but I didn't get results from a full celiac panel. Instead all I got results for was the Tissue Transglutaminase Ab IgA - which were negative (<1.2 with negative being anything less than 4). It certainly didn't answer the question I was trying to resolve. It's possible that the lab ran out of blood before they got to those tests, since I was having other tests run also. It will be at least 3 months or more before I try again to get tested.

[cyclinglady]

I am no lab expert, but I am sure they did not run out of blood. The complete panel was not requested. Did you read the lab order? It is right there when they are drawing blood. Or did your NP draw it in his office and then sent it out? Why wait three months to attempt to get retested? Three more months of being on gluten and suffering? I do not get that!

[LauraTX]

It could be possible that the others have not come back yet.  These tests tend to be shipped out to specialty labs that can take extra time.  Hopefully that is the case.

[Galixie]

The blood was drawn at her office and sent to the lab. We talked about which tests would be run before she drew the blood, so both of us were perplexed at the lack of results. I've asked her to check with the lab to see what exactly happened.

 

It turns out that my other tests revealed that I'm currently fighting off a virus and so the naturopath is less concerned about gluten sensitivity at the moment. She said that it is possible that my immune system is so out of whack from fighting this other virus that it might be over-reacting to all sorts of things (including dairy). So even if I had gotten the results, I might have ended up with a false positive which wouldn't have meant anything.

 

Also, in Jan I had a stomach ache that lasted for over a week. On the fourth day I went to the ER to get it checked out. They couldn't find anything wrong but they did a CT scan while I was there. There were no signs of inflammation on the CT scan. If I were sensitive to gluten, inflammation should have been apparent (at least in theory). So, right now, I'm supposed to just not worry about it.

[Galixie]

I had more blood work done. Unfortunately the only celiac tests run were the TTIgA and TTIgG tests (which still confirm that I don't have celiac). I don't think I will ever manage to get the gliadin tests rerun. I don't think I'm even going to try. I do plan to go gluten free again and see if it makes any difference with my remaining gut issues. Going dairy free has really helped and I feel like I need to at least try to be off of both for a bit to see if gluten is the missing piece of my ibs puzzle.

 

I prefer to avoid the withdrawal symptoms so I plan to go off gluten slowly. That also gives me more time to find alternatives that are both gluten and dairy free. I have a strong sweet-tooth and I can foresee dessert being a problem. I've grown too reliant on chocolate oreos   My other major hurdle will be the fact that I don't cook (and have zero interest in cooking). I'm doing my best to get over that particular problem. It's been more of a challenge recently because my anemia has killed my appetite and made me even less inclined to try to prepare any foods.

 

What's that saying? Some mornings it's just not worth chewing through the restraints. Yeah, that about sums it up. Plus there's wondering if the restraints are gluten-free/DF. Lol 

[Galixie]

I'm somewhat resigned to the fact that I won't ever get conclusive lab results. In my mind this means that I might have NCGS due to the one positive Iga result, but not actual celiac disease due to the three or four negative ttg and biopsy results I've had so far.

 

I'm willing to admit that mindset might be the first place I'm making an error, but I have to start somewhere so that's where I'm starting from.

 

The next place I might be making a mistake is probably somewhere in the following thoughts/statements:

• Gluten is really harmful for someone with celiac, but it is less harmful for someone with NCGS. (So at least I don't have to worry about damage if I do mistakenly get gluten.)
• Removing all foods that have gluten containing ingredients should make a noticeable symptom difference regardless of possible cross contamination. (Things like Cap'n Crunch, which don't contain gluten, but are made in a shared facility are still ok to eat.)
• The toaster I basically took apart to clean, is clean enough to use. (That toaster was a gift from someone who has since passed away...)

It's been a month so far since I gave up gluten. I haven't noticed any difference yet. I'm not sure how concerned I should be about possible cross contamination. I'm trying to find a reasonable balance. Somehow my dietary restrictions are harder for my boyfriend to accept than me. It greatly limits the places we can go out to eat. I don't cook and he's, so far, not able to cook gluten-free/DF. (He tried to make a stir fry for me last week but forgot about needing gluten free soy sauce and the stir fry sauce he used contained both wheat and dairy - oops.)

 

I'm not sure if trying to be more cautious of cross contamination would make any difference. Wouldn't I notice some benefit just from cutting out all the actual foods with gluten? Do I have to give up Cap'n Crunch too?

 

We recently ate at a place called Mod Pizza. They sell gluten free pizza (and they have vegan cheese) so I was able to eat there, but the menu had small print under the gluten free offering that basically said cross contamination was so likely at their restaurant that they didn't recommend for celiacs to eat there. That sort of confuses me. I don't know what to make of that.

 

And, when I go to a restaurant and ask for something that is gluten free, I don't know how to respond when the waiter asks if it's a serious issue or not. (That has happened. More than once.)

 

It might not seem like it, but I am trying to adjust my thinking and learn new ways of doing things. I just feel really turned around lately. It doesn't help that I keep seeing all these articles about how gluten free diets are a fad and a dumb fad at that, and that everyone should jump right off that bandwagon right now, blah, blah, blah.

 

Sorry for the long post, I'm just generally confused. I'm gluten free, but maybe I'm not gluten free enough? Or is it just too soon to expect to notice a difference?

[ravenwoodglass]

 

• Gluten is really harmful for someone with celiac, but it is less harmful for someone with NCGS. (So at least I don't have to worry about damage if I do mistakenly get gluten.)

Gluten is just as harmful to someone that has NCGS as it is to someone who has the offiicial celiac diagnosis. You did have one positive celiac test so please do not assume that you are not celiac.

• Removing all foods that have gluten containing ingredients should make a noticeable symptom difference regardless of possible cross
• contamination. (Things like Cap'n Crunch, which don't contain gluten, but are made in a shared facility are still ok to eat.)

You do have to be just as careful of CC and just removing obvious sources of gluten is not enough to stop symptoms

• The toaster I basically took apart to clean, is clean enough to use. (That toaster was a gift from someone who has since passed away...)

Please get another toaster. You don't have to toss that one just don't use it. They do make toaster bags you could use if you just can't part with that toaster.  Please read the Newbie 101 thread and take the precautions needed, doing what you are doing isn't going to make a difference if you need to be gluten free. 

 

[Galixie]

I will try to do better to avoid cross contamination.

 

I'm struggling to accept gluten as the problem. This forum is the only place where I hear the message that I should not ignore the one positive test result. That message is in direct contradiction to all the instances of being told that I don't have celiac because the ttg results keep coming back negative.

 

Adding to my struggle to accept is that, by comparison, when I gave up dairy the difference was immediately apparent within the first few days. So far I'm not experiencing anything similar with gluten and that makes me less confident about it. So I'm simultaneously trying to accept and adapt to no gluten while also thinking, "but wait, I don't really have this problem because all the tests say so..."

 

Do others go through this?

[nvsmom]

The next place I might be making a mistake is probably somewhere in the following thoughts/statements:

• Gluten is really harmful for someone with celiac, but it is less harmful for someone with NCGS. (So at least I don't have to worry about damage if I do mistakenly get gluten.)

Sorry for the long post, I'm just generally confused. I'm gluten free, but maybe I'm not gluten free enough? Or is it just too soon to expect to notice a difference?

 

I don't know if that is entirely true.  Some celiacs do not become super sick (bad symptoms) from celiac disease, yet some with NCGS may get life altering symptoms (like ataxia, neuropathies, arthritis).  As far as I can tell, the main difference between those with NCGS and celiac disease is the intestinal damage.  Yes the intestinal damage is not good but it was the migraines, arthritis, hair loss and fatigue that bothered me the most. I did get stomach aches and bloating when I ate, but it wasn't a big deal compared to my other symptoms, and I had none of the usual deficiencies and malnutrition issues that someone with intestinal damage might experience.  None.  I was even high in B12.  LOL

 

It's the systemic inflammation that was causing my issues (I believe), and someone with NCGS will experience inflammation (which is not just bloating or swelling) when they eat gluten too.Both can really impact your health.

 

A positive gliadin antibody test usually means celiac disease, and some doctors think it could mean NCGS.  Either way it is a serious issue.

 

You need to remember that negative tests do NOT dismiss a positive celiac test result. A negative test simply does not support the diagnosis, but the diagnosis is still there.  I would guess that at least half of the people around here had at least one negative celiac test mixed in with the positive(s).  There's a good reason why this PreDiagnosis and Testing board is so popular!  Celiac testing is not 100% reliable.  Tests miss people, often a quarter of celiacs will end up with a negative result on any given test.  Even the biopsy can miss up to 1 in 5 celiacs.  Getting positives and negatives can be confusing, but overwhelmingly that mixed bag of results means the same thing as a few positives: celiac disease.

 

Some of our moderators had negatives, or had negatives until suddenly it was positive, and another was just barely positive in the DGP test.  Your situation isn't uncommon, but it can be dangerous to the patient when the doctors aren't aware how flawed celiac disease testing actually is.

 

When you are asked if your gluten-free status is a serious issue, say yes and that you've tested positive for celiac disease.  It is all true!  

 

A celiac needs to be very serious about cutting out all cc.  If you have NCGS you need to be serious about cutting out all cc.  Either way you need to stop taking risks.  Don't eat things that may or may not have gluten.  Reduce the amount that you eat out; go for drinks, a movie, or a walk instead.  When you do eat out, stick to meat and veggies and check all sauces and spices.  As a general rule, pizza made in a pizza place will not be safely gluten-free - too much flour on surfaces.  Don't use a contaminated toaster, or at the very least use toaster bags.

 

This is what Captain Crunch says about their gluten-free status:

Are any of the Cap’n Crunch varieties gluten free?

The oats we buy are handled and transported in bulk by our suppliers. Cross contact can occur if the oats are grown in fields or transported in vehicles that once contained other grains. Since the kernels of the other grains are similar in size, shape and color to the oat kernel, it is almost impossible to separate them. 

Although wheat, rye and barley are not part of the ingredients in Cap’n Crunch there is the possibility that they could contain trace amounts of these grains. 

For these reasons, we don’t label these products gluten free.

I wouldn't eat it.

 

You really are VERY early in your recovery.  One month gluten-free is almost nothing.  There are some who start to feel better in that amount of time but usually it is just reduced bloating and pain after eating.  Most will take a good 6 months before they really start feeling well.  Some take longer.  At 6 months gluten-free I was still making autoantibodies so it was no surprise that I was not well yet.  In fact, from 2-6 months gluten-free, I took a real down turn and felt worse.  I still had symptoms improving at 2 years gluten-free.  

 

It can take a long time, and things change so slowly you can barely notice it.  Consider keeping a food a symptom journal to help you keep track of how things are changing.  I did that and when I would look back I would be surprised at how far I had come because it happened so slowly.

 

You can do this!  

[Galixie]

Short update:

It's been a little over 3 months of gluten free. I've been keeping a journal and see no difference in symptoms. Additionally, I seem to be having a flare up of the anemia of inflammation that I was originally investigating when I started down this path. That leads me to believe that the anemia problem stems from some other cause. Finding that cause is still my primary goal.

 

I plan to reintroduce gluten starting in September and see if I notice any sort of symptoms occurring when I reintroduce it. If not, I think I will have to assume that gluten is not a particular problem for me. I'm not that great at internet searching but, so far, I can't find any confirmation of such a thing as asymptomatic non-celiac gluten sensitivity, so I have to assume that a lack of symptoms equals a lack of sensitivity.

 

I do want to thank you all for your information and support. It has been extremely helpful and I am grateful for this forum.

 

If I start showing symptoms after I go back on gluten, I'm sure I'll be back.