Elevated IGA from Celiac Disease Test. I do not have Celia

[needspractice]

Hello Everyone,

I have a curious question. What essentially is Elevated IGA? I have look all around google and there is not much information on it.

Let me tell you my story…

I went to an Endocrinologist to check on my testosterone because I am 33. I told him I was feeling okay maybe not the best so he did complete blood work on me. I did tell him that my Father was recently diagnosed with Celiac Disease so he went ahead and ran that as well.

Long story short … the endocrinologist said that everything was perfect on me except that my IGA was elevated. His nurse at first gave me a call and said that this is probably no big deal and he just wants me to see a specialist. I was not understanding her so she just had the Doctor call me. He said that he had no idea what this mean and that “I would just not ignore it” kind of hinting that this could be a big deal.

So then he refers me to a hematologist. I am like sure okay, and then I call the office and it is like, hello thanks for calling the Cancer Center … I was like what??? I have cancer now?

So then the next day I went to my Primary Doctor and he did a blood test on me little under a year ago also test for Celiac Disease. I did not have those results but I got them today. They showed that I had elevated IGA and he didn’t even bother telling me about it. He was like it didn’t excite me; I guess meaning no big deal. He said IGA is such a basic protein to the system that it is just not that important. Only when levels are low is when people start getting concerned. His blood test just like the last blood test came back perfectly fine, literally everything else, the last blood work was like 1500 bucks, they must have had a field day checking on that IGA levels or something.

I guess the Endocrinologist was wondering how someone would have elevated IGA and not have Celiac. He did confess that he had no idea what this meant and wanted me to see a specialist. It is just the way he told me that it sounded important and that he scared me a little bit. Also the fact that when you call the Hematologist they answer the phone Cancer line how may I help you…

Anxiety. I think I really have anxiety I think. My doctor just prescribed me Lexapro. I have been acting such like a Hypochondriac and have been having multiple high level stressors in my life like going back to college, moving, marriage, in-laws, and not working.

I could have sworn I read somewhere that high IGA could be caused by Anxiety and or allergies to which I have both to where I am living at the moment. I have a lot of anxiety and there are dogs and cats where I live and when I touch one I break out in hives. Also my skin seems to be a lot more sensitive than it used to be like when I work out at the gym and sometimes I will get marks on where I press too hard on stuff. Like one time I was bent pressing and got a couple of bruises on my back that went away, and recently I just did calves raises and had some heavy weight on my shoulders have very slight red line bruise so small doesn’t seem like a big deal but just doesn’t seem like this use to ever happen before.

My Doctor says that I cannot lower my IGA. What if my IGA gets to like 5000 or something? My Doctor did have a very good point. He said blood test values are like a bell curve and that sometimes there can be outliers. I am currently in school and taking statistics so this makes perfect sense to me. He said that your body is just different in this area and this what makes you, you. If it was something low or critical we would take action.

I guess what he is saying is that this outlier is a non-essential concern.

Here are my results below…

Results 05/2013

Solstats

Result Range

IgA = 682 68-379

tTG IgA = 8.3 <20
tTG IgG = 6.5 <20
Endomysial = Negative

Results 04/2014

LabCorp

Result Range

IgA = 710 91-414

tTG IgA = 0-3 <2
tTG IgG = 0-5 <2
Endomysial = Negative

Questions:

What is IGA?

What does it mean to have High Levels of IGA?

What is the worst case scenario of High Levels of IGA?

How do I lower my IGA?

Is this a precursor of Cancer or anything like that? Or is this simply an outlier like the Doctor says and is absolutely nothing to worry about?

Help:

My main point is that I am going to my follow up visit in a week to the Hematologist and I know what is going to happen. He is going to say everything is absolutely fine. We ran a ton of blood work, not sure why that test was done, but have a nice day. And give me a look of why am I even here.

I do not want to leave still not knowing exactly what this is, and that is why I posted this topic here. I was hoping someone out there could elaborate on this so I can know that this is not a big deal. Is there anything I can do? Should I be watching out for anything? You know. So please if you can help me out and sooth my Anxiety that would be great. Thank you so much for reading and have a wonderful day.

Thank You!

 

[dds]

didn't u just ask this same question here:

http://anabolicminds.com/forum/general-chat/246098-morning-back-pain.html

 

[needspractice]

Are you seriously asking questions about a single elevated antibody on the misc?

I wouldn't care about it.

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.

I don't know abut the IgA level, but I can say that you don't need to worry about the Hematology department phone being answered as a Cancer center. I see a hematologist because I have a bleeding disorder (totally unrelated to celiac). Hematology and Oncology are grouped together as specialties. It seems that most hematologists are also oncologists, but not all oncologists are also hematologists. Hematologists deal with bleeding and clotting problems, and also blood cancers like leukemia. I always feel a little guilty in the waiting room for my hematologist because my particular bleeding disorder, now that it is diagnosed and controlled, isn't anywhere near as serious as any cancer that the other patients may have. Hope this helps.

I was in the cancer unit for a blood disorder too.... Totally freaked out some friends who came to visit me. Lol

I don't know a lot about elevated IgA except that it can be benign, or a sign of problems. http://www.webmd.com...lobulins?page=2. Hopefully it is an innocent thing for you. It can be a sign of SLE, RA, liver issues or cancer. Just don't lose sight of the fact that it could be just the way you are.

I would consult dr google and bring a lst of questions to the doctor, and then monitor it if you are not satisfied.

Best wishes.

If you want to keep reaching out for answers, you may consider a doctor with a specialty in Allergy, Asthma, and Immunology. If you can, get someone who is a "Fellow of The American Academy of Allergy, Asthma and Immunology (AAAAI) who has FAAAAI after their name. The only reason I know this is I have an immunodeficiency and see an immunologist who is a FAAAAI and also has a pediatric fellowship attached. Basically they handle anything wrong with the immune system whether it is low levels, high levels, allergies, asthma, or anything else of the sort. If it truly is nothing, they will be the person to know.



I personally have low levels of IGA and IGG, which means I am missing a chunk of my immune system. I don't know what it means to have too much, though. But if the hematologist discharges you I would definitely seek out a consultation with an immunologist.

Oh, I will do that! I should see him at my next IVIG infusion on the 17th. Sometimes I don't get to see him but I think I didn't last time so I should see him this time definitely. I am kind of like you, I can't just let things lie if something may possibly be wrong. That led to me finally getting everything properly diagnosed so I could treat the problem, not just the sickly symptoms I had. Even if it is likely nothing I would do the same! And of course seeing an allergy specialist will help you get your allergy stuff possibly under better control so there could be a plus.

Hi there welcome to the site. Firstly all your questions can not be answered here as we are not medical professonals. Those numbers make no sense to me. I'm sure if there was anything that needed treatment your doctor would be working on it

Hello from a fellow statistician!

Following from what your doctor was saying about a bell curve, using stats look at it that way. Say we take everyone's test scores, and normalise the mean to zero. If we treat the mean as an expected value, that value has a massive standard deviation. As such you end up with a normal range within that normal distribution, which could be calculated using the T-Distribution. Now you have the statistical distribution of what's normal, and your own test result, you can use ANOVA tables to find whether your test result is statistically significantly different to the normal range, i.e. ask the question "is the two-tailed t-stat >1.96?" And the answer will be no. Normal has such a huge variance that even outside the "normal range" you're still not statistically different from normal.

In human terms, neither you or I are qualified to evaluate medical test results. That's what we pay doctors for, and the doctors say you're absolutely fine.

As to your referral, you're from the US and there is quite a suing culture over there, so even if a doctor thinks someone's fine he might refer anyone with a test result outside of normal ranges to a specialist just so in the unlikely event he is wrong it's not his responsibility. The specialist said you're absolutely fine too. Also don't forget healthcare is privately provided in the US as well so it may well be in the company's interest to run superfluous tests and make needless referrals.

You have my every sympathy for your shock at calling the specialist to find it was a cancer specialist, I'm guessing this is what kicked off your anxiety. I was genuinely ill to begin with on my journey, it was only doctors mentioning they needed to "rule out" strokes, brain tumours and other things that really ****ed my head up. My only advice is stop trying to evaluate information you don't have the necessary prerequisites to evaluate. Would you trust a hairdresser with a laptop with your investment decisions? Would you trust a doctor with google to represent you in court? No? Then don't trust a statistician with google to professionally evaluate your health, just because that statistician is you.

Now this I am VERY interested in, I tested high for serum igA level too, this was after testing high for Vitamin B12 on 3 different blood tests without supplementation..

I also saw a Hematologist about these readings because as I am sure you have read one immunoglobin being high might indicate multiple myeloma....however that is a fake high caused by paraprotein, I got informed that that was also tested with the other immunoglobins shortly after and was fine.

The hematologist found nothing wrong with me by the way, felt my nodes, spleen and tapped my whole body lol then ran lots of blood testing but all was clear and fine and I was discharged.

I also like you had a celiac panel done, but that was negative just the iga alone high.

Have you tried going gluten free? There is a lot of research going on at the moment into gluten intolerance as opposed to celiac and you could fit that catergory. The only way to know would be to cut out gluten for a few months and see how you feel. Going gluten free has helped me a lot in terms of pain and anxiety, and digestion of course.

I was tested for celiac disease but my test was negative, but I tried gluten free diet anyway and it made a huge difference to how I felt

Happy to help where I can. I'm not expert, but I have suffered from anxiety all my life and was recently diagnosed with Chronic Fatigue. I have suffered from pretty much every symptom out there including aches and pains, fatigue, irritability, brain fog, severe anxiety, unable to digest food etc etc. I have been tested for celiac and the test was negative, but I decided to change my diet anyway after reading a lot about it and how diet changes have helped many people. I'm pretty much on a primal/paleo style diet now and it has helped me so much. I wouldn't go back to eating the way I did before. I haven't found doctors to be very helpful as they don't know about a lot of this stuff and certainly aren't experts in terms of nutrition. I have found the Perfect Health Diet book to be a huge help. Going gluten free is definitely a good start. That is what celiacs are told to do - they must avoid anything with gluten in it as it attacks their bodies. So I guess eating what celiacs eat and avoiding gluten are one in the same in that respect. There is hidden gluten in a lot of processed food, so you have to be really careful. Good luck and feel free to stay in touch if you want to keep discussing as I'm pretty passionate about this stuff after finding it helped me so much.

I had a lot of symptoms including dizziness, visual disturbances, pains in my upper abdomen and back, muscle spasms, nausea, bloating, pins and needles, low blood sugar. Chest pains the pain got so bad I ended up in a and e a few times! I also used to feel very tired and used to fight sleep during the day at work when I stopped gluten most of it stopped although I have Ibs so still have some issues I also felt a lot more alert. Hope this helps

I don't think its a "false high" I mean in the case of Myeloma its a false high because its a cloned immunoglobin but as you are clear of Myeloma like me it isnt the case.

I have kind of put this to one side personally over the past few months but I am interested in this answer too.

I am unsure if it is linked to celiac disease, especially since we both have had clear celiac blood tests. But the other abnormal test found in me is Vitamin B12 was also high, I was tested for most things that cause that too and again nothing was found.

B12 is also absorbed via the small intestine, where celiac disease happens.

I sometimes get lower abdominal cramps, that can last for hours to almost a whole day which seem to be wind related but again in the area of my small intestine.

other so far unexplained symptoms I have are:

fatigue
headaches
dizziness
muscle pain/fatigue
pins and needles
high blood pressure


I am going to try to see my dr again 2moro, to talk over this yet again but one test I want is an MMA urine test to see if I have some kind of functional B12 defiency.

Going Gluten free seems like quite hard work, but maybe its worth a try?

You know these aren't "unexplained" right? These are the classic tell-tail physical signs of severe anxiety, especially when grouped together.

But "anxiety" isn't an explanation, it's just a word for a group of symptoms. I think the original poster and a lot of others like myself are interested in understanding the root cause, which is something doctors are usually unable to help with.

Astrongtower - The book I have is called The Perfect Health Diet, by Paul and Shou-Ching Jaminet. It explains a lot of this stuff and what you can do about it.

Well personally I think there's two aspects. Firstly, depression. My doctor suggested I was depressed and this seemed utterly obtuse. Then I took the NHS depression test, then every other online test, and every single one told me I was "severely depressed". For me, scary symptoms of what was then a genuine (but non-serious) health concern kicked all this off, and I understand it is well documented that those with depression can slip into severe anxiety following a traumatic event.

In terms of the symptoms of anxiety, I think these are generally well understood. Certainly the ones in the quote above are.

However the reason anxiety manifests in the first place, I think, is rooted in the gut. There's a massive correlation between GERD and anxiety, just as there is with ME/CFS, the physical symptoms of which are pretty much identical to anxiety. I recently read a book written by one of the members of PheonixRising called Autoimmune: the Cause and the Cure which explains a hypothesised connection between digestive issues and various autoimmune illnesses and how to overcome them. I've altered my diet accordingly the last week and feel a lot better. But I am genuinely suffering a post-viral illness as well as the anxiety, so perhaps this isn't relevant to the majority on here, but it's certainly worth a read for anyone.

Yes, I totally agree with you there about the auto-immune stuff and the core of health being with our guts. There is a very strong brain/gut connection and they both effect each other - so anxious feelings can bring on digestive problems and vice versa. It's very interesting as well as all the stuff they are now finding out about gut bacteria. The book you read sounds interesting and very similar to a lot of the stuff I have been reading lately. YOu would probably enjoy reading The Perfect Health Diet also as it looks at all the actual scientific evidence for nutrition and how it can cause or prevent disease and comes up with a diet based on that, which I'm pretty much following. There is also the GAPS diet which is recommended for people with auto-immune conditions and aspergers and autism etc, and is also helpful for people with IBS. Lots of info out there if you're prepared to look huh!

Well this book is great as it's split into two parts: first the science and then the diet. I know very little about science but I know quite a bit about stats, and I have to say the relationships hypothesised in the book definitely stand up in terms of the maths.

All very interesting! I do firmly believe that "normal" diets these days are bad for you, a few years ago before my daughters were born I wa sin the best shape of my life through eating better choices, like quinoa, rice, sweet potatoes instead of pasta, chips.

I have not read these diets you have suggested yet but I assume they are similar, no wheat? no hydro fats?, no coffee?, and more caveman style?

I need to get myself on track diet wise again somehow, there was a period of about 3-4 days when I didn't eat gluten and went out for sunday lunch, after eating that I went straight to tired and headache within 30 mins of finishing it.

as i said above I was negative for celiac.

I will report back again later because I have made an appointment to talk to my doctor again on this subject, about the iga and b12 levels and about the likes of cfs/me, sle, autoimmune problems. The b12 one interests me a lot at the moment because I have had 3 blood tests show levels of 800-900 when the range is 300-600ish. I do not take b12 supplements, any multi vit or even eat cereals that have added vitamins, and practically all causes of high b12 have been ruled out so its a mystery.

Although on some pages like pheonix rising I have seen it mentioned that the cause could actually be a functional b12 problem, the body not being able to absorb and use the b12 and it keeps getting exported back into the blood.

I have tried mentioning this to my doctors but have been refused tests to check this so far, one test that I know of is MMA urine test. or there is blood testing for the active form of b12 rather then the standard blood test which is active and non active forms.

 

[needspractice]

Bump ...

 

[rugger48]

Really, lol

 

[needspractice]

Really, lol

Can you help me?

 

[rugger48]

Can you help me?

If I could I wouldn't . don't seek medical advice on a fitness forum is one of 2 things I will say. The other, your not looking for advice your just trolling the board.

 

[needspractice]

If I could I wouldn't . don't seek medical advice on a fitness forum is one of 2 things I will say. The other, your not looking for advice your just trolling the board.

o i c

 

[dds]

Can you help me?

I can please PM me your SS# and your home addy. I will send info right away

 

[needspractice]

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!

 

[casuallythere]

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 <6

Cholesterol = 123 / should be 125 – 200

HDL Cholesterol = 29 / should be >40

 

[jswain34]

1-2. As far as i know (which could be wrong to some degree), you dont just "develop" celiac disease from continually eating gluten. It is an inherent inability to "tolerate gliadin, the alcohol-soluble fraction of gluten" (per medscape).
3. I would just try and limit gluten first. Then if youre still having issues try to cut it out altogether.
4. Yes, I believe so.
5-6. I, nor anyone here, will be able to answer these questions. Other than, yes, you will be "okay".
7. No offense, ask the doctor that ran your bloods. Or use google scholar and do some reading. Heres a link from mayo: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8157
(^now dont go thinking you have multiple myeloma or some crazy shît)

Considering you have IBS, i would try to lower systemic inflammation as is. One way would be attempt to do so would be to limit gluten (assuming you are in fact intolerant).

 

[casuallythere]

3. I would just try and limit gluten first. Then if youre still having issues try to cut it out altogether.
4. Yes, I believe so.
5-6. I, nor anyone here, will be able to answer these questions. Other than, yes, you will be "okay".
7. No offense, ask the doctor that ran your bloods. Or use google scholar and do some reading. Heres a link from mayo:

Considering you have IBS, i would try to lower systemic inflammation as is. One way would be attempt to do so would be to limit gluten (assuming you are in fact intolerant).

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.

 

[casuallythere]

3. I would just try and limit gluten first. Then if youre still having issues try to cut it out altogether.
4. Yes, I believe so.
5-6. I, nor anyone here, will be able to answer these questions. Other than, yes, you will be "okay".


Considering you have IBS, i would try to lower systemic inflammation as is. One way would be attempt to do so would be to limit gluten (assuming you are in fact intolerant).

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!

 

[jswain34]

If you fee amazing off gluten and doctor one thinks you have gluten intolerance, i ask you this: what would be the purpose of a biopsy? If you subjectively FEEL better and there is a physician that believes there is diagnostic evidence that would support your subjective improvement why proceed further? Shouldn't you feeling better and a doctor agreeing you be enough? Basically, I'm saying is that i agree with your dad. If you feel better then id just call it like it is and chalk it up to something you were eating that contained gluten, even if doctor B says it wasnt/isnt the gluten itself.

 

[casuallythere]

If you fee amazing off gluten and doctor one thinks you have gluten intolerance, i ask you this: what would be the purpose of a biopsy? If you subjectively FEEL better and there is a physician that believes there is diagnostic evidence that would support your subjective improvement why proceed further? Shouldn't you feeling better and a doctor agreeing you be enough? Basically, I'm saying is that i agree with your dad. If you feel better then id just call it like it is and chalk it up to something you were eating that contained gluten, even if doctor B says it wasnt/isnt the gluten itself.

Oh I'm sure Doctor B probably thinks its Gluten. Its just that he would want to know for sure I am guessing, but the only way to know for sure is to get a Biopsy. However, I have read that the Biopsy is a hit or miss. They go in and try to grab pieces of your gut and could get a clean sample right next to a damaged sample. So people that even have Celiac could have a negative Biopsy.

I think I should just listen to my Body and just get off gluten. I have already done it for a few weeks and feel a lot better!

 

[casuallythere]

If you fee amazing off gluten and doctor one thinks you have gluten intolerance, i ask you this: what would be the purpose of a biopsy? If you subjectively FEEL better and there is a physician that believes there is diagnostic evidence that would support your subjective improvement why proceed further? Shouldn't you feeling better and a doctor agreeing you be enough? Basically, I'm saying is that i agree with your dad. If you feel better then id just call it like it is and chalk it up to something you were eating that contained gluten, even if doctor B says it wasnt/isnt the gluten itself.

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!

 

[casuallythere]

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.

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!