pain*in*my*gut

The reason I ask is because its kinda tough for me to know when I am glutened since I dont react to anything at all. The tests say I have it but I would never know it if I ate a regular piece of pizza or bread. I wouldn't do that but just giving an example.

Yes, that would be tough. I would think regular follow-ups with your GI for blood tests would be sufficient to make sure your numbers stay in the normal range and you are not accidentally getting glutened on a regular basis.

We've started doing these "morale boosting" activities at the office (when what really needs to be done is some manager training, but that's another story). They almost always involve cupcakes and cookies and sometimes pizza. If I know they're happening, I bring something suitable for me and usually don't care what they're eating. Last year's Halloween thing was great -- we decorated pumpkins and no food was involved. Because the pumpkins were deemed "too hard" this year's Halloween activity will be cookie decorating. I offered to make the cookies (to avoid the inevitable crumbs all over the conference room and the cc on the decorating materials) and was told I could make my own. Pretty much figured that would be the answer. I'm fine with that. Just stay away from me with those crumbs. So I'm going to pull out the stops and make my own cookie and bring my own serious decorating supplies (used to decorate cakes) and make the most amazing Halloween cookie.  I'm thinking something 3D -- maybe a pumpkin made out of multiple cookies glued together with royal icing or a headless horseman made of fondant with a pumpkin-decorated cookie for his head or a spider up on glass-like sugar legs. It'll go beyond their tube icing and candy sprinkles.

And for my birthday this month, screw their cupcakes that I can't eat. I'll bring in the most fabulously decorated cake ever and make my tastebuds happy.  

I love your attitude, Bigbird! LOL!

Please post a picture of that awesome cookie when you make it!  

Josh,

You seem unbending on the fact that many people test negative for celiac on blood panels. You said this small percentile of people is somehow "freakish" or they have something strange going on" (your words). Furthermore, by using such phrases as "in the real world"...you suggest something I find rather offensive. And there is no need to be condescending in your tone to me. I am pretty bright--honest!

I do not know what you mean by a "false positive"=how does that happen??!!

I do not know why you are set on negating the real experiences of many people on this site-- people who have suffered a great deal as a result of faulty testing results.

Those of us with celiac disease who have had negative or "borderline" blood test results and other difficulties with attaining a proper diagnosis (and unbelievably long illnesses and resultant autoimmune diseases) are trying to offer our experiences to people who come on here and ask legitimate questions.

It is not really your place to take issue with people's REAL experiences--and call them "anecdotal complaints", insinuating that they are "fictional" or insignificant. That is really not the nature of what this forum is about.

Most of us are quite well-versed on the stats that support celiac blood panel reliability. Many of us have done all the research. This does not mean that false negatives do not occur.

It is our concern for this child that has prompted us to try and answer this mother's questions as thoroughly as possible.

We agreed...she has a celiac gene. We offered that sometimes the blood panels are negative. We offered our own experiences with labs. That's what we do on here. So the person who asked the questions can weigh the answers and use what is helpful.

To say that our experiences--i.e. those that do not fit your "stats"-- are not valid is incredibly disrespectful.

My own doctor--a reputable GI and  celiac- savvy doctor--says false negatives happen more commonly than is believed--which is why do many people fall into the "undiagnosed" category. Like me.

As for your "95% accuracy" rate? well, that is not  impressive to those who fall into the other 5%. We are the ones who fell into the  "undiagnosed" category and suffered inexplicable dire complications.

I do not know why this is so important to you--to be absolutely "right" about this-- but since  you do not allow for this possibility, it is not really possible to discuss this topic with you any further, now is it?

I am afraid we will have to agree to disagree.

I hope the original poster got a satisfactory response to her question ---as it got lost in your attack on Enterolab's credibility.

I have to agree with this, Irish.  I am not sure what Josh's motives are, but he seems to be focused on numbers and research and not real people's experiences.

I have said this before, but I will say it again.....when you are dealing with immunology (which is what serologic testing for Celiac is) there is a HUGE margin for the unexpected!!  Many auto-immune diseases have a sero-negative immune response, which means that it will not show up on lab tests!!  You can have full blown Lupus and be negative on blood tests!!  Why would that be any different for Celiac??  It's NOT!  You do not have to have a positive blood test, nor are you a freak of nature if your labs are normal and you do in fact have Celiac!  It happens, trust me!  I am a clinical laboratory scientist, I worked in an immunology lab for almost 10 years!  I have seen it in real life, and many people are unfortunately living it.

So, there's a lively discussion going on another topic, and one of the questions there revolves around what "DQ" testing provides. My previous assumption was that DQ testing worked pretty well, and that it gave you a specific fix on your DQ type. We have another assertion, though, that DQ tests sometimes only tell you whether DQ2.5 or DQ8 was found. If true, this would be totally inadequate for celiac disease screening.

So, what services have people used to determine their DQ types? What sort of results did you get back?

I've used 23andme, and they told me I was homogeneous for DQ2.5. I believe with more work (looking up variations yourself in a public database) that it should be possible to determine most if not all DQ variations. The cost is $99 up front and I think $5/month; you're forced to sign up for twelve months.

My doc used LabCorp, and I got a "you are positive for HLA DQ2 and negative for HLA DQ8".  That's it.  Plus, I had to ask her for the gene tests...she wasn't even going to order them and my GI doc didn't even care what they said.

I hate to be a Debbie Downer, but the fact is, Josh, that most people really don't care what their genes are, they just want desperately to feel better. Most people don't have the money and/or knowledge to carry on extensive genetic research about their condition. Doctors just want to push pills and collect your co-pays and send you on your merry way.  They don't care about mapping genes and finding cures (unless they are in research, which we all know there is very little of for Celiac disease and non-Celiac gluten-intolerance).  Only big pharmaceutical companies care about that stuff, and since there is no drug fix for Celiac disease, we are screwed.

Hello everyone.

I just got my results back from the lab.  I understand everything but the last part.  Can someone tell me if this is a preliminary "negative" result, or does it mean something else?  I also have Hashimotos, if that explains anything.

Celiac Disease Comprehensive      Result  Flag  Units  Reference
Deamidated Gliadin Abs, IgA          7          units     0-19
                                        
Deamidated Gliadin Abs, IgC          2          units     0-19
                                        
t-Transblutaminase (tTG) IgA        <2           U/mL     0-3
                                          
Tissue Transglutaminase (tGG) has been identified as the endomysial antigen.  Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy.

t-Transglutaminase (tTG) IgG        <2          U/mL     0-5
                                                                          
Endomysial Antibody IgA            Negative             Negative
Immunoglobulin A, Qn, Serum         315         mg/dL    70-400


Thanks all!!

Therese

The last part is the test for the endomysial antibody (a very Celiac specific marker)...you were negative. The second test was for IgA deficiency (immunoglobulin, A, quant).  Yours was in the normal range, which just verifies that the other IgA mediated tests are accurate, and not falsely neg due to IgA deficiency.

Hope this helps!

I am so so happy to have found to you.

I always felt so alone with all my digestive issues, rash etc.
here is some history about me

I am 5'2 weigh about 112. I have been as little as 93lbs can't seem to gain weight like a normal person even when pregnant unless I'm bloated of course then I look like I'm pregnant

always been Anemic most of my life, worse while I pregnant. Dr's always think I must be bleeding somewhere. Really??? for the last 30 years I don't think so. <<<Sarcasm well I have had a few times where there was bloody mucas in my diarrhea.

I have had diarrhea off and and on for 30 years mostly o.n I have had it for the last 15 yrs with out a break.
I have major smelly gas, bloating, stomach cramps, indigestion, horrible itchy rash on my butt and back now moving to my arms and my leg's as well. I have dental issues my hair is falling out. I have insomnia. I'm cranky most the time and depressed. I'm a walking nightmare.

I have been labeled with IBS, Depression, Anxiety, Low Serotonin. Sometimes I think we know more then the doctors. I can not get a Dr to listen to me they always want to just label me with IBS tell me to take Fiber. Wow I can't do that,Fiber kills me.

Oh and my period goes MIA occasionally, now I just don't have it hardly at all but that could be my age I am 47
My youngest child has type 1 diabetes other 2 seam to have no problems.

I am on my 4th day of gluten free diet and so far I have noticed that my moods have changed I'm not as irritable seems my indigestion is calming down and I don't seem to be bloating as bad. This is it so far but I have been going untreated for a long long time so this may take a while from what I have read.

I am seriously thinking about ordering a test from a lab online since the Dr's here are uneducated on this disease I guess I'll have to take matters into my own hands If I want to be normal again. Whatever that is, not sure I remember.

Do you think my symptoms fall in line with Celiac's disease or Gluten sensitivity?

Wow!  Yes, you do sound like you have Celiac. You must go back on gluten NOW if you want an official dx! The lab tests and the biopsy for confirmation will NOT be accurate if you have been gluten free for any period of time before the tests (especially the blood tests).  I was gluten free for 2 weeks before my GI ordered a scope, so now I am forced to eat gluten for a MONTH so that I can (hopefully) get an accurate dx.  

And get the kiddos checked, too.  The sooner you know, the quicker you can get on the right track.

Hello!  I am a newby here....and I need need to vent....

Here is a little history.....I had a bowel resection in 2007 (endometriosis had grown into my bowel, so they removed a small part of it).  I then developed complications from the surgery (excessive scar tissue causing bowel obstructions, GI yeast infection, rectal inflamation and bleeding). I was tested for celiac at that time and everything was normal (but on the high end of normal). Then I starting having muscle pain, fatigue, chronic lower back pain and was dx with fibromyalgia.  GI symptoms settled down, and for the most part my only complaint was constipation and gas.

About 6 weeks ago I started having this horrible pain in my upper left abdomen, just under my ribcage.  Saw my GP, who did a Celiac screen just in case. Low and behold.....POSITIVE!  But, only my Deaminated Gliadin antibody was positive (it was 59, normal is 0-19).  My TTG IgA was less than 2, which is normal.

I saw my GI doc on 8/1, and he said that my test results for celiac were "inconclusive", and I have to have an endoscopy.  I had been gluten-free for 2 weeks, and he said that I had to go back on gluten for a month and then do the biopsy.  I was so upset, as eliminating gluten had made my fibro symptoms dramatically better!!  Would 2 weeks of being gluten free really effect the biopsy results?  I thought it took the gut 6-12 months to heal on a gluten-free diet, I had only been gluten-free for 2 weeks!!

I have since started eating gluten again, and I am getting so sick after eating it!  The gas and bloating are horrible, and it feels like my stomach is just so inflamed about 1 hour after I eat gluten that I almost throw up!  How am I supposed to do this for another month??  I read where you are supposed to eat like 4 pieces of bread a day, and I can't!!  

I would just say screw it...assume that I have Celiac and be done with testing, but I have a 6 year old son, and I need to have an "official" dx so that I can get him checked if I do indeed have it (as well as my other immediate family members, 3 of which have signs of it).

I am going to see my GP next week, and I am wondering if I should see if I can get a second opinion (about waiting to do the biopsy).  I am miserable, and I feel like I am being tortured by my GI doc.  Surely 2 weeks of not eating gluten can't heal the intestines enough to cause a negative biopsy, can it?

I don't know, what do you all think I should do?

Thanks in advance!