If you are still following this, you may want to go to a rheumatologist. Also, stool testing is more sensitive than blood testing. The body responds in two different ways to gluten and other potential food allergens. Celiac sprue is gluten response in the gut. The other celiac related genes are associated with systemic responses that result from exposure to certain foods like gluten, casein, soy, yeast, egg. I have the latter and it can wreak havoc on your entire body usually via autoimmune conditions and flare ups of those conditions without strict adherence to dietary restrictions. What you described a while back with your red marks on your body from pressure-that sounds like a histamine response. If you suspect you are allergic to the dogs and cats, you very well be. However, if you find that exposure is worse during certain seasons, it could actually be environmental allergens carried on their fur. Bottom line, gluten free (and soy and casein, as well, in my instance), is actually very healthy and would be good for your children. There are all sorts of veggie pizza crusts and the little bit of cheese on them occasionally, works fine with my system since I , otherwise, drink almond milk or eat low casein cheeses (goat and sheep). Enterolab.com does the stool testing. One interesting note re: your doctor and the blood work-I read that the best way to get accurate blood work for gluten sensitivity is to eat a high gluten diet the day before the test. Duh! Years ago, I was tested after several months without gluten at a follow visit by an ignorant rheumatologist who questioned the validity of my positive stool test results. Never returned to him but I continued with the endocrinologist who ordered the stool testing. You may find that you have other food sensitivities via the testing. I’m only recommending a rheumatologist because you are concerned about the elevated IgA. Best wishes.
One more thing - secretory IGA - that's taken from your mucous membranes of your mouth or gastrointestinal tract are reliable indicators of your IGA levels. Blood is also but apparently I read somewhere that the IGA levels in your mucous membranes is a more accurate measurement
Your endo sounds confused. She has got herself mixed up with IGA - TTG antibodies and IGA deficiency which is more haematology related. If you had IGA deficiency that would be demonstrated by your IGA levels as compared to IGG and IGM.
No wonder the Haem was so surprised to see you. Especially if nothing is actually wrong.
I have the same thing-elevated IgA. Found through celiac testing (5+yrs ago), which i do not have. Neither doctor seemed concerned, but at the time, my googling and anxiety became terrible!
I had it re-tested twice since and both times were elevated. Hope yiu are well!!
-Kelly
Update!
Someone mentioned on another forum about "Silent Celiac" this is exactly what I was needing in order to complete my research. Here is a great article about it.
https://www.verwel.com/asymptomat or-silent-celiac-disease-563125
Please read this if you are on the fence, but this is exactly what I was trying to say.
Of course, he recommends to stay on a gluten free diet however, he says in the end its a Gamble. Its up to you. You could eat gluten once or twice a month and never get cancer, or develop something worse or you could. However, this is life, you could get cancer at any time, or get hit by a car, or smoke and get cancer or not.
I agree with everyone, be as safe as possible, however everyone's risk tolerance is different, and I think people should respect that. If I want to increase my risk a little I should be able to do that without being criticized.
However I really appreciate everyone's help! Thank you!
Last main point! Question/Theory?
So here is why I started this whole Journey. I wanted to know if I could get Celiac or have Celiac. The reason being is because my wife is pregnant and we are going to be have 2-3 kids. I wanted to know if I am going to have to be that Dad that is like I can’t have that piece of pizza because it has gluten in it. Or have they ask why Daddy are you not eating a piece of pizza. I know that this is a lame example but I mean just wanted to be sure that I had to go this direction.
That’s not my main question.
My Theory is that Gluten intolerance is like smoking, or drinking. Yes both can ultimately kill you and make sure very sick but if you just smoke a little and drink a little you probably are not going to die. Yes we can debate this a million ways to Sunday but I know if for example you are just a social drinker you should be fine.
This is like Gluten. I think I can go gluten free for a year and let my inner lining heal 100%. Then re-introduce gluten into my system on extremely small amounts like breaded fish, or the occasional hamburger, but never binge on it with rolls, pizza, subway sandwiches, and tons and tons of pasta like I have been doing just recently.
The only strange thing here is that I have read peoples post online to where Celiac is extremely embarrassing and hard. To where some people can’t have a single trace of gluten in their diet ever. They have to even ask if they use the same kitchen tools for their non-gluten cooking because they are worried that they might have a trace of gluten on it. Maybe some people react differently or have the pain like my dad and have to avoid, I don’t know. I do know that even my dad has a little gluten every now and then and he is fine.
So my main question is. I know that gluten can damage your system without you even knowing it, or sign of any systems. But how bad is it? I have asked my Doctor about this and he said that it is impossible to be completely pure. That you just go on a gluten diet and eat it at least as possible. THAT CAME FROM MY DOCTOR.
So is my theory right? Can you go gluten free and just have a little once in a blue moon, or will you die? Could you develop cancer secretly in your gut because you had a piece of pizza or a subway sandwich a few times a year? Without even knowing it?
Or can you heal for like a year, get your system strong again, and just cheat or have a piece of gluten once in a blue moon, because my dad is doing that right now. Or is he going to die?
I am not taking about the symptoms here. I mean at least we know what it is. I mean if it is gluten, and you have a strong system, if you eat it will you just have to deal with the aggravation of the symptoms if you eat it? Seems to me this is the correct answer.
I mean I believe some people are going to say you can’t have a spec of gluten but I think they are wrong. I think you can have a spec every now and then just like you can have a drink of alcohol every now and then. You might have a hangover later, or might have IBS, but you will not die.
I think yes, if you leave your gluten unchecked and eat bread all the time and just live in discomfort with possible pain and ignore everything, yes you could develop something much worse. But I would never do this. I am a very detailed person and will go gluten free base on my results. Simply having the possibility of developing Celiac is enough for me, but cheating every now and then I do not think is out of the question.
Let me know what all of you think. I really appreciate all of your help!
P.S. I forgot to mention that I have been gluten free 2-3 weeks now just trying it out and I feel absolutely amazing. I mean it’s like night and day. I use to feel sluggish, sometimes rarely I would get a slight pain right before going to the bathroom in my lower intestine, I would have diary sometimes, IBS problems, whatever, nothing seriously hardcore, never serious main or major pain, just a lot of discomfort, I mean sometime I would be fine and sometimes not. As of right now I have had zero issues with my gut, bloating, gas, pain, discomfort, I mean it’s like I’m a new person. So I guess I diagnosed myself. I mean I could do a Biopsy and stay on gluten like one of my Doctors say, but what’s the point? I have it possibly in my genes and I feel amazing. Just probably need to go Gluten Free!
Let me know what you think!
Good Update! Need Your Advice!
Okay everyone, I just got back my results for my both my Genetic Celiac and Immunofixation, Serum TESTS.
Immunofixation, Serum:
No monoclonal protein identified.
HLA Typing for Celiac Disease:
The patient has one of the HLA-DQ variants associated with celiac disease. More than 97% of celiac disease patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. However, 39% of the general U.S. population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or DQ8 or both variants is not per se diagnostic of cecliac disease. Genetic counseling as needed.
HLA-DQ2 – Negative
HLA-DQ8 – Positive
HLA-DQA1* – 01
HLA-DQA1* – 03
HLA-DQB1* – 0302
HLA-DQB1* – 0503
Both My Doctor’s Recommendations:
Doctor 01 – Internal Medicine
Says that my Peptide IgA = 20 means that I have a gluten sensitivity and that I should go on a gluten free diet. Also said my IgA = 680 is of no significance because it has stabilized and actually lowered from 710 to 680.
Doctor 02 – GI Doctor
Says my Genetic Test doesn’t mean anything and that the only way to find out for sure is to stay on gluten and perform a Biopsy. I almost feel like he is trying to sell me a Biopsy but I could be wrong.
Questions:
1-Not sure what the results mean, can I get Celiac or Not? Is it in my genes, I guess it is, I’m one of those 39%. Maybe if I was one of the 71%, I guess I would have nothing to worry about.
2-Do I go off gluten or do I stay on it?
3-My Father never got the Biopsy done because he did not want to risk a procedure, he was very confident that when he got off gluten that he felt better overnight. Should I just go down the same path as him? I mean if I do have the small possibility to get it, why even risk it. Just go gluten free, right?
Help!
Please help me to interpret these results and give me guidance on what to do. Thank you.
Hello Everyone!
I’m back and I’m still here. However, I have some questions.
My Doctor said I was on the borderline now. So I pressed him harder and asked him what did he mean and he said since I am on the max level of 20 on my Gliadin Peptide Ab, IgA that I should go Gluten Free now. As all of you know this is a big life changing thing. No more bread, pizza, sub way sandwiches, pasty, Italian food, etc. etc. The list goes on forever. I know I can make adjustments and I am prepared to, however I want to make sure I am reading all this correctly.
I am just still unsure if I will have celiac or have it now just the precursor, or do I just have an insensitivity to gluten. Keep it light but I can manage it.
I am little confused.
Do I go gluten free because I will get Celiac Disease if I don’t?
Questions…
1-Do I have Celiac Disease or not?
2-If I don’t, does it looking like I am getting it?
3-What should I do?
4-Can you be in between it? Meaning can I be sensitive to gluten but yet eat it a little bit in moderation?
5-If I went 1 year off gluten, repaired my bloodwork numbers, and had little bits of bread here and there with gluten would I be okay?
6-My dad had celiac or thinks that he does, he never officially did the biopsy, however, he had lying on the floor pain to where he wanted to kill himself. Now that he is gluten free he never has that pain again. I have never experienced anything close to this. Will I?
7-Am I missing anything else from these results, does high iga or Ab, iga mean anything else with no other symptoms?
Note:
I have ibs out bursts, low intestine problems for sure off and on. Headaches sometimes. I am thinking that if I go off gluten anyway I am probably going to feel 1000 percent better. So I am thinking about trying it anyway, however its not the end of the world and I could keep eating loads of gluten, if everything stayed the same. However, if this blood work looks like I am heading for a on the floor screaming in pain session later in life, I mine as well take care of it now.
All my other full comp labs came back normal besides my slightly high bad cholesterol.
PLEASE HELP ME BECAUSE I AM SO CONFUSED. ANYTHING YOU CAN DO WOULD BE GREATLY APPRECIATED. PLEASE SEE ALL MY RESULTS BELOW RELATING TO CELIAC.
History of results:
2011
HDL Cholesterol = 32 L
Should be >39
2013
IgA = 682 H / Should be 68 - 379
Endo = Negative
tTg Ab, IgA = 8.3 / Should be <20
Gliadin Peptide Ab, IgG = 9.2 / should be <20
Gliadin Peptide Ab, IgA = 10.0 / should be <20
tTG Ab, IgG = 6.5 / Should be <20
2014
IgA = 608 / Should be 68 - 379
Endo = Negative
tTg Ab, IgA = 11.9 / Should be <20
Gliadin Peptide Ab, IgG = 9.7 / should be <20
Gliadin Peptide Ab, IgA = 12.1 / should be <20
tTG Ab, IgG = 10.1 / Should be <20
2014 – Different Test
CCP Antibodies IgG/IgA = 12 / should be 0 – 19
2014 – Different Test
Immunoglobulin A, Qn, Serum = 710 / should be 91 – 414
2014 – Different Test
Immunoglobulin A, Qn, Serum = 721 / should be 91 – 414
Immunoglobulin M, Qn, Serum = 271 / should be 40 - 230
2014 – Different Test [Later in the year]
Immunoglobulin A, Qn, Serum = 753 / should be 91 – 441
Immunoglobulin M, Qn, Serum = 270 / should be 40 – 230
2017
Immunoglobulin A = 690 / should be 68 – 379
Endomysial Screen = Negative
tTG Ab, IgA = 2 / should be <4
Gliadin Peptide Ab, IgG = 2 / should be <20
Gliadin Peptide Ab, IgA = 20 / should be <20
tTG Ab, IgG = 1 / should be 40
it doesnt appear you celiacs, you would have to have skin manifestation Dermatitis herpitformis, or gastrointestinal issues. if your tests have no anti-gliadin, anti-glutanimase,anti-endomysial, along with the other levels of IG. it seems from the gym you had pressure utacharia. yes please doa genee test. i
ONLY IGA does not indicate celiacs, you will need the others iga,igg,ige, and anti-gliadin, and anti-transglutiminase antibodies. there is also a difference between sensitivity and celiacs. you can get a genetic test done to see if you have the genes for sensitivity or celiacs.
iga LEVELS can be elevated when your fighting an infection, or a low level chronic one.
UPDATE:
Ok I am not sure if this helps or not, but I no longer have the weird feeling in my left torso, that is gone.
The only feeling that I have left is the weird sensation right on the left side of my nose and possibly sometimes below my left eye.
It comes and go.
If I put an eye patch on my left eye I do not feel the sensation. So I am thinking it is eye strain or that it is just pressure from the patch distracting the other sensation.
I just went for a walk and I really didn’t feel it. So I think it might only come when I look down at the computer screen or watch TV.
I mean how are you suppose to know when you need glasses? I mean I can still read the words but is it just harder for me to do so now?
I recently moved a very heavy flat screen and put it on my shoulder/back, have been studying a lot by looking down and on the computer, and have been watching TV until like 4 in the morning sometimes.
I think this might be related to my Shoulders or middle back or upper neck but I am not sure. Can a pinched nerve affect facial muscles?
PLEASE HELP ME ANY WAY THAT YOU CAN!
I agree. I might try that anyways and see if it helps me a lot.
Doctor says I cant lower my IGA levels, do you think that is false? I was thinking why couldn't I.
It's not hard going GF, I did it only as a trial and then realized I felt better, seems I have been ill for a long time and did not know it. You don't need bread, but do take a good vitamin because you will need that. It took me 2 weeks before I felt really good. Gluten is in a lot of things, so read up.
The only way you'll know is to give GF a trial and see what happens. If you try GF and retest IgA levels in about 8 months to a year and see a difference, you'll have your answer.
Anyone have any new information on high level of IGA when everything else is perfectly normal?
Thank you so much for responding. That does make a lot of sense. I have a question for you though.
Is it possible that maybe if I went gluten free now even though I didn't technically have to that it would give my system great re-leaf? And possibly greatly delay or possibly permanently delay anything worse from happening from continually eating gluten.
Basically could I lower my IGA levels back to a normal range by eating correctly and eliminating gluten out of my diet or is this impossible and my IGA level are going to stay where they are no matter what I do?
Thank you so much for your help and look forward to your answer.
IgA is the antibody that protects your gastrointestinal tract and respiratory tract among other things.
In the medical setting I am in, we see elevated levels of IgA before someone turns up with either gluten-sensitivity or celiac disease. We tend to look at it as the body is in the initial stages of ramping up and fighting the incoming gluten - and it's doing a great job. But at some point it just isn't able to continue the 'fight' and the total levels of IgA plummet. Somewhere in there, we typically find that IgA-gliadin levels rise.
It can take many years for someone with celiac disease to actually 'show' damage in the duodenum that allows a doc to be suspicious and take biopsies that result in a diagnosis. In some cases, I've heard it takes up to 10 years. A lot could be going on during that time including the changes in IgA levels.
You might want to consider doing a gene test for gluten to see what genes you're carrying. It might give you an early idea of whether or not you're current elevated levels of IgA could be correlated with a diagnosis of celiac disease that may be made at a later date. Enterolab has a decent gene test. Take a look.