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Blood Test Positive, Andoscopy Next Please Help
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19 posts in this topic

Hi,

I am new to this....just diagnosed. I have been ill with bouts of nausea, vomiting, abdominal pain etc since the summer. I suspected a food allergy such as tomatoes or something, but had never heard of celiac. Iwas so sick, that I finally dragged myself to the emergency on Thanksgiving, and they ran a cat scan and x rays. The referred me to a gastroenterologist for that Mon. This wonderful man took one look at me, and started asking questions.... symptoms, was I always so thin (yes, I am 5'10, and no matter how much I eat I never weigh more than 120 lbs unless pregnant!) location of pain, history of surgeries (knee surgery 8/04), traumas etc. and heritage (Irish). He then told me he suspected Celiac. He sent me for blood work and stool analysis (positive) and has scheduled an endoscopy for the 28th. After reading and speaking to people about celiac, I feel very blessed to have found this very aware doctor. My problem now is that I need to continue eating some gluten until the endoscopy so as to not skew the results. This is very difficult...I become completely incopasitiated when I do. I am hopeful, though, it is a relief to look forward to a healthy New Year, even with the sacrafices of bread, pasta and beer. I hope to be able to gain weight, believe me, it is depressing to ea a lot and be painfully thin. Does anyone have wight gain tips for me?

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If you DO have celiac you're not likely to gain weight until you go gluten-free, which, as the doctor said, shouldn't be until after the endoscopy. Once you go gluten-free and have healed, you might not have any trouble at all gaining weight. In fact, some of us found we had to start making a conscious effort NOT to gain weight for the first time in our lives. For 46 years I ate whatever I wanted and barely gained. Two years after going gluten-free I had gained 50 pounds, about 30 more than I really wanted (I've lost 25).

richard

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One tip. STOP eating gluten. The endoscopy is looking for damaged villi and they will not repair in 20 days of no gluten.

I'd heard of docs asking celiacs to eat gluten for the bloodtest but this is the 1st i've seen a doc ask it for an endoscopy.

The bloodtest results depend wholly on having eaten gluten regularly and recently and i've never heard that the endoscopy does.

Personally there is NO WAY i'd continue eating gluten in your situation. What defines celiac disease is that the immune system treats gluten like a poison.

The real purpose of the endoscopy is to be able to track progress as the villi repair. Whether you eat gluten for the next 20 days or not, a 2nd endoscopy months from now will show better villi than your scope on the 28th.

STOP THE GLUTEN !

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Your doctor sounds very with it and I'd follow his orders. You don't have to eat lots and lots of gluten. Might as well indulge in the gluten items that taste good during this last fling! :)

For weight gain, I recommend coconut oil--it's a fat that's more easily absorbed than most fats. I gained weight on that before I discovered I have celiac disease.

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There's no way that I would be able to continue eating gluten for the test. You'ld have to wheel me into the hospital. That's how sick I would be!

I get soooo sick when I accidentally have it.

please let us know how you make out.

Thanks,

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Your doctor sounds very with it and I'd follow his orders.

Blindly following dr's orders to consume the poison doesn't do any celiacs any good. It is NOT necessary, and they'll keep on asking celiac after celiac to poison themselves until enough of us say no.

The bloodtest for gluten anti-bodies is the ONLY test that requires the patient to have ingested gluten recently for the test to work. The endoscopy is to look at the small intestine's villi. They do NOT repair in a matter of days. If they did, the procedure would be to get another endoscopy after a week or 2 gluten-free. The ACTUAL procedure is to do a 2nd in 6 mos or more.

Also, any patient who has been gluten-free too long for the blood test, should use the DNA test for celiac disease diagnosis.

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Hi Tom,

Could you tell me more aobut the DNA test? I had a few different blood tests after they found Gliadin AB (IgG) to be very high. The other tests were normal. I also read somewhere that if you have an immune deficiency (IgA deficiency) then those other tests would not really be valid. Well, I fall into that category as I have Primary Immune Deficiency and receive monthly immunoglobulin infusions. That also went undiagnosed for years. It's funny how I had to be my own dr. and figure things out! I am just trying to figure out if one problem caused the other. I guess it doesn't really matter. I DO know that I have less problems when I don't have gluten. That's enough evidence for me but I am still trying to get the diet right!

I have a way to go before I can say that I actually feel better but I think that I am on the right path! Just curious about the DNA test.

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We really DO have to be our own doctors at times.

Good info on a celiac DNA test here:

http://www.kimballgenetics.com/tests-celiacdisease.html

I think it needs to be used a lot more considering how often the bloodtest gives a false negative. http://www.celiac.com/st_prod.html?p_prodid=1023

I actually get chills reading your "I have a way to go before I can say that I actually feel better but I think that I am on the right path!" comment. I remember the overwhelming feeling of relief, just exhilirated that it was REALLY gonna be over this time.

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From your mouth to Gods' ears Tom! There are times that I am so wiped from trying to get better that the only thing that I could do is "be sick". It requires less energy...It just happens. Getting better ...on the other hand is a lot of hard work!

Someone passed a comment to me once that I ran to too many different doctors! I thought about it and discussed it with my therapist at the time....she said not to pay attention to what people said....they don't know any better. She also said that when I stopped running to doctors would be the time to worry. It meant that I gave up on trying to help myself. I've always remembered her words and just kept pushing myself to get to the bottom of it. I vowed to leave no stoned unturned....

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I actually would stay on a little gluten because 1. if it isn't very much damage then they might repair fast and you would get a false negative and then never know if you actually have celiac, and 2. if your doctor knows this much about celiac, he knows what he is doing, and you should follow his orders. he seems like the best doctor anyone could ask for and he knows enough about celiac to know that if you go on the gluten-free diet and then have the biopy there is a chance for a false negative, and you really don't want that. Your doctor knows what is best for you.

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Again, the doctor does not always know what is best for you.

I think the esteemed stanford emiritus doc who recommended I eat half a slice of bread/day for a month would have to admit to violating the Hippocratic Oath if he REALLY knew what it would do to me, and how it would feel every day. I'll look it up in a minute, but isn't a crucial part of that oath "Above all, do no harm" ? Not just "Do no harm" or "Do no harm, unless you think you'll get better data w/ just some harm".

There IS a definitive once-per-lifetime test to reliably know whether anyone has celiac disease (or more technically, has the potential to have celiac - some ppl stay untriggered).

http://www.kimballgenetics.com/tests-celiacdisease.html

Aw dang :blink: I just found out that the part of the Oath i thought i was quoting is called a "widely held misconception". There's still a point to the story. No one knows your body like you do. And if you research how long it takes villi to repair, you'll realize that a couple weeks isn't going to make much difference in an endoscopy. But the time it takes to start feeling A LOT better once starting gluten-free is only days.

If you're still ingesting gluten, imagine how good it would be to feel pretty good on Sunday or Monday (and better practically every day thru the 28th) instead of incapacitated .. . every . .. day . . . .thru xmas shopping . . .thru xmas eve and xmas (or _____ insert holiday preference here) then for 3 more days until an endoscopy which will look essentially the same whether you've already stopped the gluten or not.

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And ANOTHER thing . .. .. if it's all that important, why couldn't he squeeze you in for an endoscopy on the 10th ? I'd guess most of the others ahead of you are already gluten-free.

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The genetics tests is not definitive of anything. Approximately 30 percent of the population has at least one of the genes, but less than 1 percent of the population has celiac. In addition, it appears that perhaps 1-2 percent of people with celiac have neither gene.

richard

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When considered in the scope of the rest of your life, the three weeks (since you posted to the endoscopy) may seem like a long time, and may feel like forever, if you need that diagnosis for any reason, then staying on gluten may just be the way to go. As for doctors asking you to potentially "continue harming yourself" for eating gluten and the "first do no harm" premise - it has long been understood that some "harm" is acceptable in order to do greater good. If not for that, you couldn't take a blood test (you're pricking the skin, giving the chance of an infection) or cutting open an abdomen to take out an infected appendix (you're cutting the skin, putting the patient under, and risking significant blood loss).

As always, you have the choice of doing the gluten-free diet on your own without an 'scope, and I call myself gluten intolerant without ever having had a biopsy and only having inconclusive blood results (I do better on the diet). But if the diagnosis is what you need, then there's going to be some down time while you "prepare" for the test.

(Ditto what Richard said - the gene test is not sufficient to tell you if you have, or will ever develop, celiac disease. It tells you that you could, if you test positive, but not that you will.)

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Whoa - charlotte_cat says " I have been ill with bouts of nausea, vomiting, abdominal pain etc since the summer" and "eating some gluten ... ...is very difficult...I become completely incopasitiated when I do." (forgive the paraphrasing plz)

And given the above, are you two (tarnalberry & lovegrov) saying that if she ALSO has the genes for celiac, you would conclude further testing is req'd for diagnosis ?

And perhaps a larger point is that if the genes are NOT there, it is IMPOSSIBLE to have the disease.

Richard, the genetic test IS definitive. W/out the genes, one can't ever get celiac disease. And the way i've read it, anyone and everyone w/ the genes has the potential to develop celiac disease. The triggering mechanisms are what currently stumps the researchers.

Comparing a pinprick to a month of bread for a celiac makes me think you never really had the full set of symptoms that many of us celiacs did have, tarnalberry. If that's the case, you were fortunate, but imho unqualified to advise a celiac on this matter of consuming gluten for an endoscopy.

And obviously, removing an appendix can save a life while my point was that the difference in glutened endoscopy and 3 wk gluten-free endoscopy is inconsequential.

The only arguable point is whether 3 wks gluten-free significantly changes endoscopy results, as i have no hard data on that. I've certainly never heard of a doctor ordering endoscopies a month apart to see progress. I'm pretty sure they have a good reason for waiting months for a 2nd endoscopy.

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No, I have read and studied the symptoms that celiacs can have, and yes, I am fully aware that it can be life-threatening, both physical, mentally, and emotionally. The damage it can put a body through physically and psychologically can have far far reaching consequences. That does not mean, however, that she doesn't have a valid _NEED_ for a diagnosis that a doctor may not be willing to give without a 'scope.

Additionally, what Richard says is true, and I encourage you to further look into it - the genes currently identified do NOT account for all cases of gluten-intolerance or celiac. There are biopsy-confirmed celiacs who have none of the genes identified, and those who are gluten-intolerant have been genetically tested clear as well. They are continuing to work on identifying the full set of genetic markers that predispose people to intestinal damage from gluten.

I am not saying she doesn't have celiac disease, and never did say that. She may well have it, given the symptoms she describes. (Quite likely, I'd say.) But the fact that she's decided to continue with the endoscopy despite knowing that gluten causes her problems is indicative that she has a reason for doing this. There have been a few other threads discussing some very valid reasons for subjecting yourself to the damage in order to get a "definitive" diagnosis from a doctor - which a genetic test is insufficient for in some cases. A lot of this depends on her doctor (or potential doctors).

If you look back over my old posts, you'll see that I'm not biopsy diagnosed myself, and you're right - I don't have nausea and vomitting when I get gluten (though I do feel like crap). I did just go with inconclusive blood tests and a dietary challenge. But that resolution is not for everyone, and this is definitely a case when "one size does not fit all".

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That does not mean, however, that she doesn't have a valid _NEED_ for a diagnosis that a doctor may not be willing to give without a 'scope.

I never meant to imply to not get a scope. My position is that she's already said gluten incapacitates her, and under these circumstances it's not necessary to continue daily "bouts of nausea, vomiting, abdominal pain etc" for an endoscopy.

I'd be willing to bet that of the people in line ahead of her, those who are already gluten-free would even gladly trade appts if they'd been through the symptoms she's currently dealing with.

Backing away from Utopia, the next best choice is to stop the poison and feel good throughout this holiday season and have an endoscopy which no1 has yet claimed will be significantly different after a couple weeks gluten-free.

In the past week on thus forum alone i've seen 3 out of 3 newly gluten-free ppl just RAVE at how much better they feel every day.

E-VER-Y DAY!

No more "bouts of nausea, vomiting, abdominal pain etc".

Better.

Every day.

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Additionally, what Richard says is true, and I encourage you to further look into it - the genes currently identified do NOT account for all cases of gluten-intolerance or celiac. There are biopsy-confirmed celiacs who have none of the genes identified, and those who are gluten-intolerant have been genetically tested clear as well. They are continuing to work on identifying the full set of genetic markers that predispose people to intestinal damage from gluten.

Do either of you have a link handy pointing to proven celiacs w/out DQ2 or DQ8 ?

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Ahhh never mind, found PLENTY. hehehe :rolleyes:

Didn't know that the latest was that as high as 5% of celiacs don't have DQ2 or DQ8.

My apologies. I thought it was far lower.

I'll never back off the assertion that our thread-creator should start gluten-free asap. The blood work is done. Still haven't heard of a doc scheduling biopsies 3 wks apart.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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