What My Gastro Wants To Do Now...

[Wandering Hermit]

Here is my story:

Dxd April 2005 w/ celiac disease based on blood work ONLY, and symptoms, of course.

However the tests were not conclusive:

gliadin IgA - normal

gliadin IgG - high

trasnglutamase tTG - borderline

Went gluten-free, saw the occasional watery D disappear, also have not had bad cramps like before.

But I still have very loose stools and just don't feel good.

Went to a gastro a week ago. He commented that the blood tests were inconlcusive.

He had me do a barium swallow - small bowel follow-through - it was normal.

He mentioned I may be refractory because I have not responded to the diet (not true, I have partially responded. But like many doctors, he does not listen).

He is also concerned about collagenous sprue.

So today his assistant called me and said "The doc wants to do an upper endoscopy."

Now this makes no sense to me unless I go back on gluten for a while first. Because, if he does a biopsy today and it comes back normal, it does rule out the collagenous sprue or refractory sprue, but it does not say whether I ever had celiac disease in the first place!! Given that the blood tests are inconclusive for me, you'd think he'd want me on gluten first, right?

It just makes zero sense to me to do an endoscopy after being gluten-free for almost 6 months (unless I previously had a positive endoscopy result and he is merely checking to verify that the villi healed.)

I'm still thinking the odds are that I do have celiac disease, but there is some small chance I don't. And I am sick of not being certain. I'm just wondering what you all think.

Thanks

[lovegrov]

No sense in doing the endoscopy for celiac unless you eat gluten for a good while first. However, if there are other things he wants to look for, it would make sense.

Refractory sprue is very, very rare. Odds are extremely strong that you do not have that. Some people who are still having problem improve by taking probiotics. And others are still getting gluten they aren't aware of.

richard

[Wandering Hermit]

I am REALLY considering the DNA tests through Kimball Genetics or the like. It seems to me that if those come back positive for either of the two genes then I know I have it, and I would not have to do the gluten challenge. If they come back negative, then I know it's not celiac disease.

The only bummer is I have to pay for this, but it is starting to look worth it.

Why won't doctors simply order the DNA tests for patients suspected of celiac disease???

[ILOVEOMC]

Not on the topic, but my husband is a HUGE RUSH fan!!!!!

[Guest nini]

Personally I would really question this Dr.s logic and find out exactly why he wants you to have the endoscope and exactly what is he looking for. If his answers do not make you comfortable or ease your mind, I would pass on it for now and really look at your diet and make sure there is not some hidden gluten you are still getting, or make sure there aren't other food allergies or sensitivities that are aggravating your already damaged system.

[nettiebeads]

I think Nini's advice is very good. If you have had some success with the gluten-free diet, then I strongly suspect celiac disease. But there may be someother problems probably caused by celiac disease that have to be addressed.

Off the subject, my 3rd ex was a huge rush fan, now I can't listen to them.

[floridanative]

Just to share what I'm going through. I have unexplained anemia and so finally got to at gastro doc a couple of weeks ago. He took blood/stool samples and I went back last week to discuss the results. My blood tests revealed I am not absorbing nutrients correctly which explains my iron deficient anemia but now he's making me have a colonoscopy next month. If nothing odd shows up there, then he's doing the stomach biopsy to check for celiac disease. When I asked him if I should start a wheat free diet (he said Celiacs can't eat wheat) he said no. You need to be eating it to get accurate test results. So now I'm just waiting probably a month to find out if I have celiac disease or not. Either way, I'll try and go gluten-free for three months and see if I'm just gluten intolerant which I understand wont' show up in a biopsy. So my comment to you would be that does not make sense (to me) to have the test your doc wants if you're already off gluten.

Now finally to my question. Does any one know what else could be wrong besides Celiac problems if you are not absorbing nutrients correctly? I asked a Nutirsionist last night at a gluten-free senimar and she couldn't even tell me.....

Tiffany M

[Wandering Hermit]

Now here is something from the enterolab web site that really confuses me and is giving me big doubts about doing the gene test: My comments in red.

How common are the gluten sensitivity and celiac genes?

DQ2 is present in 31% of the general American population. DQ8 (without DQ2) is present in another 12%. Thus, the main celiac genes are present in 43% of Americans. (HUH????)   Include DQ1 (without DQ2 or DQ8), which is present in another 38%, yields the fact that at least 81% of America is genetically predisposed to gluten sensitivity.   (Great. I send them $150 and it is most likely that they will tell me I am genetically predisposed for celiac? Sounds like a big waste of money to me. I thought this testing would show up positive only for 1/133 people!!) (Of those with at least one DQ1 allele, 46% have DQ1,7, 42% have DQ1,1, 11% have DQ1,4, and 1% have DQ1,9.) Of the remaining 19%, most have DQ7,7 (an allele almost identical in structure to DQ2,2, the most celiac-predisposing of genetic combinations) which in our laboratory experience is associated with strikingly high antigliadin antibody titers in many such people. Thus, it is really only those with DQ4,4 that have never been shown to have a genetic predisposition to gluten sensitivity, and this gene combination is very rare in America (but not necessarily as rare in Sub-Saharan Africa or Asia where the majority of the inhabitants are not only racially different from Caucasians, but they rarely eat gluten-containing grains, and hence, gluten-induced disease is rare). Thus, based on these data, almost all Americans, especially those descending from Europe (including Mexico and other Latin states because of the Spanish influence), the Middle East, the Near East (including India), and Russia, are genetically predisposed to gluten sensitivity. (That is why we are here doing what we do!) But be aware that if a person of any race has a gluten sensitive gene, and eats gluten, they can become gluten sensitive.

[Claire]

I am REALLY considering the DNA tests through Kimball Genetics or the like. It seems to me that if those come back positive for either of the two genes then I know I have it, and I would not have to do the gluten challenge. If they come back negative, then I know it's not celiac disease.

<{POST_SNAPBACK}>

As I understand it the DNA markers cannot prove that you have celiac- only that you are genetically speaking a candidate for celiac. Without the marker you could not have celiac - with it you COULD have celiac but may not have it. Make sense. Someone correct me please if this is incorrect. Claire

[skoki-mom]

I think Nini's advice is very good.  If you have had some success with the gluten-free diet, then I strongly suspect celiac disease.  But there may be someother problems probably caused by celiac disease that have to be addressed.

Off the subject, my 3rd ex was a huge rush fan, now I can't listen to them.

<{POST_SNAPBACK}>

Your 3rd ex??? There must be a story there

I only have one ex, best 200lb I ever lost, lol.

[Rachel--24]

DQ2 is present in 31% of the general American population. DQ8 (without DQ2) is present in another 12%. Thus, the main celiac genes are present in 43% of Americans. (HUH????)   Include DQ1 (without DQ2 or DQ8), which is present in another 38%, yields the fact that at least 81% of America is genetically predisposed to gluten sensitivity.   (Great. I send them $150 and it is most likely that they will tell me I am genetically predisposed for celiac? Sounds like a big waste of money to me. I thought this testing would show up positive only for 1/133 people!!)

I think you may have misunderstood this. DQ2 is present in 31% of pop. DQ8 is in 12%. Those are the Celiac genes.

The DQ1 gene is in 38%...but this gene is a gluten sensitivity gene rather then a Celiac gene.

The 81% is not all Celiac genes...its a total of all gluten sensitivity genes.

Also the statistics say 1 in 133 *have* active Celiac Disease. There are many many others who carry the Celiac gene but do not have the disease. Just because 43% of the poulation carry Celiac genes does not mean 43% of the population has Celiac Disease.

Gene testing does not tell you whether you have celiac disease or not...it only tells you if you are genetically predisposed.

[Wandering Hermit]

I think you may have misunderstood this.  DQ2 is present in 31% of pop. DQ8 is in 12%. Those are the Celiac genes.

The DQ1 gene is in 38%...but this gene is a gluten sensitivity gene rather then a Celiac gene.

The 81% is not all Celiac genes...its a total of all gluten sensitivity genes.

Also the statistics say 1 in 133 *have* active Celiac Disease. There are many many others who carry the Celiac gene but do not have the disease. Just because 43% of the poulation carry Celiac genes does not mean 43% of the population has Celiac Disease.

Gene testing does not tell you whether you have celiac disease or not...it only tells you if you are genetically predisposed.

<{POST_SNAPBACK}>

Yes, I understand that. I guess what I'm surprised at is that this is saying that 43% of the population carries the genes but less than 1% develops the disease. Given that it is likely that I have celiac disease, the odds are going to be higher than 43%, in all likelihood, that I have one of those genetic markers. So I'm probably wasting my money by doing this test - the odds of it telling me I don't have celiac disease are not really that good, while positive genetic results won't confirm that I actually have it.

I'm so frustrated with *not* knowing 100% that I have this disease, if you can't tell. When I was first "diagnosed" I did not question it - it made so much sense. But now I am really wishing I would have had the biopsy done on day one. Of course my Idiot Doctor never even brought that up. And now Idiot Doctor #2 wants to do the biopsy after 6 months gluten-free! Hello?

I'm considering taking this into my own hands if they don't start making sense - namely, going back on gluten for x months, tracking my symptoms, then seeing a NEW GI and THEN asking for the endoscopy. Just an idea.

[julie5914]

I think you can have trouble with absorption with other diseases of the intestines like Chrons and parasites.

Upper endoscopy makes sense to see if there is still damage which could either mean you are still getting gluten somehow or are a slow healer and can also test for a myriad of other problems, including growths, ulcers, cancer. He may not know specifically what he is looking for - he is looking to try and figure out what is making you still feel sick. I would not go on gluten.

I have been gluten-free for about 4 months now (still having some symptoms though definitely better like you) and would consider endoscopy if my gastro suggested it just to make sure it is just Celiac we are dealing with and check how the healing is going.

[skbird]

I think you may have misunderstood this.  DQ2 is present in 31% of pop. DQ8 is in 12%. Those are the Celiac genes.

The DQ1 gene is in 38%...but this gene is a gluten sensitivity gene rather then a Celiac gene.

The 81% is not all Celiac genes...its a total of all gluten sensitivity genes.

Also the statistics say 1 in 133 *have* active Celiac Disease. There are many many others who carry the Celiac gene but do not have the disease. Just because 43% of the poulation carry Celiac genes does not mean 43% of the population has Celiac Disease.

Gene testing does not tell you whether you have celiac disease or not...it only tells you if you are genetically predisposed.

<{POST_SNAPBACK}>

Rachel - you are coming along nicely, Grasshopper!

Aren't those numbers something? I don't have either of the two Celiac genes (same as you...) and yet we both react. Genes aren't everything, but they can help indicate to you that you are more likely to have a problem. But as you can see, 81% of everyone has at least one gluten gene - which really does make sense when you consider that only ruminants like cows and other animals with multiple stomachs are really made to digest gluten grains.

Definitely having the gene does not a disease make - one of my genes is highly correlated with narcolepsy and I definitely don't havzzzzzzzzzzzzzzzzzzzzzzzzzzz (oops, dozed off there...)

Stephanie

[skbird]

Hey WH - I just FINALLY got an apppointment with a GI for next Thursday (for a con$ultation...) so I hope that is a good experience. Probably he will be pissed because I have been gluten free for nearly a year and no amount of money will get me back on the stuff. But I think my problem is bigger than gluten. For example, as I just posted in my endometriosis thread, it's possible to get endometriosis on your small intestine and produce many of the symptoms I already have. It's not likely to be your situation (unless you are on estrogen therapy! ) but the point is you can have gluten problems AND some other gut condition causing you misery.

I'm so frustrated at this point, it's unbelieveable... good thing I have sense of humor about things!!!!

Stephanie

[Rachel--24]

Yes, I understand that. I guess what I'm surprised at is that this is saying that 43% of the population carries the genes but less than 1% develops the disease. Given that it is likely that I have celiac disease, the odds are going to be higher than 43%, in all likelihood, that I have one of those genetic markers. So I'm probably wasting my money by doing this test - the odds of it telling me I don't have celiac disease are not really that good, while positive genetic results won't confirm that I actually have it.

I'm so frustrated with *not* knowing 100%  that I have this disease, if you can't tell. When I was first "diagnosed" I did not question it - it made so much sense. But now I am really wishing I would have had the biopsy done on day one. Of course my Idiot Doctor never even brought that up. And now Idiot Doctor #2 wants to do the biopsy after 6 months gluten-free! Hello?

I'm considering taking this into my own hands if they don't start making sense - namely, going back on gluten for x months, tracking my symptoms, then seeing a NEW GI and THEN asking for the endoscopy. Just an idea.

<{POST_SNAPBACK}>

I know how you feel about "not knowing". My Enterolab results were positive for IgA, tTG and malabsorption. I had all the symptoms as well. I obviously need to be gluten-free and its definately making me feel much better. My malabsorption score was very high which would indicate alot of damage but my gene test revealed that I do NOT carry either of the main celiac genes. I have DQ1 and DQ3.

The point is that whether or not you have celiac disease show up in a biopsy you clearly have improved on the diet so its best to stay gluten-free. Why complicate matters by going back on gluten especially since you may just still be in the healing process.

Also other tests I've had done revealed no "beneficial" bacteria in my intestines. This causes an unhealthy imbalance in the gut. I take probiotics that are helping. Do you take any probiotics? I also take digestive enzymes with my meals...this is also helping.

I would stay gluten-free but go ahead with the endoscopy and have the GI look for other conditions or possibilities for your continuing symptoms.

I'm having the endoscopy/biopsy on the 3rd...I have not gone off the diet for my test. I'm not expecting a Celiac dx but I think since I'm having the procedure done to check for other things it will ease my mind that nothing else is going on other than waiting for healing to take place.

[Wandering Hermit]

Well thanks for all the notes, folks...

I scheduled (tentatively) the endoscopy for Oct 14th. I'm already nervous. 20 minutes of continuous gag reflex = FUN FUN FUN.

Also, this gastro looked at my overall IgA levels and guess what - they are *normal*. Which means that my initial blood diagnosis of celiac disease is now even more suspect - my gliadin IgA was normal, IgA was high, tTG was borderline. Not exactly a compelling case. My Idiot Doctor #1 should have immediately sent me to a gastro for an endoscopy. Now everything is much more confusing.

Now if my biopsies happen to come back normal, it still leaves me in the gray area. It could mean I never had celiac disease, or it may mean my villi (at least the ones he collects in the biopsy) are healed up. Then I am back to square one. Do I have celiac disease? Who knows!!

At that point it will be really hard for me to not go give myself a gluten challenge and see how I feel. No way I am going to stay on this diet unless I get a 100% confirmation I have this disease.

But that is a big "if."