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jhun

Did Endoscopy And Biopsy

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got diagnosed with celiac 1 1/2 months ago and been gluten free since then. the gi doctor who diagnosed me through bloodwork (positive lgA and elevated tTG) refused to do endoscopy since he said the bloodwork is more than enough. went to another gi doctor who did the endoscopy and biopsy but the results were quite confusing here's what it says:

1. antrum/stomach biopsy: gastritis, presence of h. pylori organisms(which i tested neg. 4 months ago through bloodwork done by another gi dr.) in moderate to severe amounts. no metaplasia, dysplasia and neoplasia seen.

2.duodenum biopsy: severe active duodenitis suggestive of peptic duodenitis, no parasites, NO FEATURES OF CELIAC DISEASE, no metaplasia, dysplasia and neoplasia seen.

the dr. gave me a 7 day course of antibiotic, 1 gm. amoxycillin + 500 mg. clarythromycin plus a proton pump inhibitor pariet 20 mg. all twice a day. the amoxycillin contains starch of unknown source and i think im glutening myself. after the first day on antibiotics i woke up very tired even though i slept a complete 8 hrs.

he told me to stick to the gluten free diet and he said he will see me in a week and tell me more.

DO I REALLY HAVE CELIACS?

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I'd say it's a good bet you DO have celiacs. The reason we go on the gluten-free diet is so that the villi can grow back. In some people that can take a long time, but a month and a half is certainly enough to cause some areas of healing. If the GI doctor only took a couple of biopsies it is quite possible he missed the damage. Bloodwork is a valid diagnosis, and I'm not sure I've ever heard of a false positive. I've heard of plenty of false negatives, but not really sure I've ever heard of false positives.

I just finished a round of the therapy that you are taking for H.Pylori. I didn't have any specific reactions to the amoxicyllin or clarithromycin...my proton pump inhibitor was prevacid and no reaction to that either.

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I would agree with dlp252. If you felt better after a month and a half of being gluten free. I would still stick with the diet. My doctor told me that a positve blood test result is a very good assurance that you have celiac disease. Now with going on the gluten free diet and you feel the improvement you can bet you have celiac disease.

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dlp252, he took 4 pcs. of tissues from my duodenum and 4 pcs. from the antrum.

shannon, i insisted on the biopsy because i have no signifant improvement in the gluten free and dairy free diet. my symptoms of bloating, belching, flatulence and borborygmi are still present.

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if you were gluten free during the 6 weeks before the biopsy, having a negative biopsy does NOT mean that you do not have Celiac.

Your other symptoms could be causing your problems.

Your blood tests indicate that you have a problem with gluten. A biopsy can rule IN celiac, but cannot rule it OUT.

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dlp252, he took 4 pcs. of tissues from my duodenum and 4 pcs. from the antrum.

shannon, i insisted on the biopsy because i have no signifant improvement in the gluten free and dairy free diet. my symptoms of bloating, belching, flatulence and borborygmi are still present.

No evidence of celiac disease means very little more than a blindfolded person not hitting a bullseye on a dartboard with 4 shots.

Unless your atrophy is big enough to be seen by the naked eye then the samples are just taken anywhere that looks inflammed or different. Given you are +ve for h. pylori it would be hardly surprising if there was not the primary sites that stuck out ofter 1 1/2months gluten-free to the naked eye.

In summary its proably a good thing you had the biopsy and found h. pylori which is easily treatable.. but your initial diagnosis is also still valid and further the presence of h. pylori explains why... " i have no signifant improvement in the gluten free and dairy free diet. my symptoms of bloating, belching, flatulence and borborygmi are still present."


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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was your EMA positive? I think there are other conditions that can flatten the vili and elevate the tTG. There's a 5% error rate on the tTG. Maybe the H Pylori had inflamed your intestines.????? Very hard call here and I really feel for you. I would try to use your bloodwork as an indicator. The only thing is that you won't know if it's getting better because the H. Pylori has been treated or the diet is working. You might want to go back on gluten and see if your blood work normalizes and you feel better once the H Pylori is treated. If your bloodwork doesn't improve, then you will have more evidence towards Celiac. I would really think it through and try to get a definitive diagnosis one way or another. Good luck.

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just my opinion----but my suggestion is that you stay gluten free like your doctor suggested (he must also feel you have celiac disease--just like the first doctor?) and have your Ttg levels tested again in about another month and a half. you should be able to see an improvement in your Ttg levels by that time if you have celiac disease. if you have raised Ttg levels, it is most likely that you have celiac disease. which IgA levels were positive?


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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The thing that really confuses me is that tTG is an anti-self indication of an auto immune response when your body tries to build back the small intestine, right????? The key is pin pointing what really flattened the villi in the first place. Was it Celiac or H Pylori? Also, in cases like this, they like to look at the EMA. If your doctor didn't run an EMA, I would run one ASAP. If that's positive, I would say it's Celiac for sure. My son has his biopsy next week and I'm anxious to see what we find out. It seems as if Celiac, H Pylori, Casein Intolerance, and Crohn's can have very similar symptoms and difficult to differentiate when getting a diagnosis. Good luck again. I think you need to control a variable like either the diet or the H Pylori meds. You want to pinpoint which course of treatment is making you better. Again, a really tough call here.

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was your EMA positive? I think there are other conditions that can flatten the vili and elevate the tTG. There's a 5% error rate on the tTG. Maybe the H Pylori had inflamed your intestines.????? Very hard call here and I really feel for you. I would try to use your bloodwork as an indicator. The only thing is that you won't know if it's getting better because the H. Pylori has been treated or the diet is working. You might want to go back on gluten and see if your blood work normalizes and you feel better once the H Pylori is treated. If your bloodwork doesn't improve, then you will have more evidence towards Celiac. I would really think it through and try to get a definitive diagnosis one way or another. Good luck.

hi rez, my EMA is normal. as mentioned in the biopsy there is no villi atrophy which means my villi is okay. im in my 4th day of antibiotics and the excessive belching is gone but still having borborygmi. my dr. said that my duodenum is receiving heavy acids from my stomach which is caused by h. pylori. the biopsy suggested gastritis and peptic duodenitis. i googled for peptic duodenitis and saw one research with a title "Celiac disease with a histological feature of peptic duodenitis" which means in the biopsy celiac can present itself as peptic diodenitis. really confused now????? anyway waiting till wednesday for my next appointment with my dr. and let me see what he has to say.

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as mentioned in the biopsy there is no villi atrophy which means my villi is okay. i

No it doesn't it means the points they sampled were OK.... huge difference since they sampled less than 1/1000th of your intestine.

Secondly even if they somehow sampled your whole intestine it doesn't mean your not celiac according to some MD's definition...

If you take the genetics work of many a very large proportion of caucasians are liable to get celiac disease... yet many don't. It seems in many cases a trigger is needed? That trigger seems increasingly to be in the form of parasites or other influences, be that Lymes diseasae or h. pylori.

As I mentioned earlier h. pylori is going to give you an inflamed duodenum all by itself, thus making for angry areas for sampling but not necassarily the areas where you have villi damaged by your own antigens.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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just my opinion----but my suggestion is that you stay gluten free like your doctor suggested (he must also feel you have celiac disease--just like the first doctor?) and have your Ttg levels tested again in about another month and a half. you should be able to see an improvement in your Ttg levels by that time if you have celiac disease. if you have raised Ttg levels, it is most likely that you have celiac disease. which IgA levels were positive?

its the gliadin IgA that was positive

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Please keep us posted and best of luck to you. We asked our son's doctor some of these very same questions regarding other reasons for flattened villi. He has been screened twice for H Pylori and both were negative, but our doctor said he's still going to look for H Pylori since those blood tests can be wrong. My son's tTG was slightly positive, but he had been on a gluten free diet for 3 months when the bloodwork was done. Now he's been back on gluten the past two months and will be scoped and have his blood work redone. I feel for you. I really hope you get some definite answers. I know that's what we're hoping for.

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No it doesn't it means the points they sampled were OK.... huge difference since they sampled less than 1/1000th of your intestine.

Secondly even if they somehow sampled your whole intestine it doesn't mean your not celiac according to some MD's definition...

If you take the genetics work of many a very large proportion of caucasians are liable to get celiac disease... yet many don't. It seems in many cases a trigger is needed? That trigger seems increasingly to be in the form of parasites or other influences, be that Lymes diseasae or h. pylori.

As I mentioned earlier h. pylori is going to give you an inflamed duodenum all by itself, thus making for angry areas for sampling but not necassarily the areas where you have villi damaged by your own antigens.

Thanks for the info gfp. yeah you're right the h pylori could have triggered the celiacs in me and my other symptoms are lingering because of this infection even if im gluten free. feeling better yesterday, my tummy felt normal and the gas problems are almost gone. by the way, im a filipino and celiac is very rare in my country that's why i keep looking for answers to my confusions. anyway, even if my doctor will tell me that i have no celiacs and that its the h pylori, i will not dare go back to gluten even if he asks me for a gluten challenge. im okay with the gluten-free diet, it was really hard at first but after 1 1/2 months i have adjusted completely to this diet and everything is a normal life now, i dont wanna complicate things further just to eat pizza or whatever glutened. if my gas symptoms disappear completely then thanks God and thats it, gluten-free for life.

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Please keep us posted and best of luck to you. We asked our son's doctor some of these very same questions regarding other reasons for flattened villi. He has been screened twice for H Pylori and both were negative, but our doctor said he's still going to look for H Pylori since those blood tests can be wrong. My son's tTG was slightly positive, but he had been on a gluten free diet for 3 months when the bloodwork was done. Now he's been back on gluten the past two months and will be scoped and have his blood work redone. I feel for you. I really hope you get some definite answers. I know that's what we're hoping for.

hi rez, thanks for your support. i also feel for your son. the blood test for h. pylori can be false negative because it happened to me, nothing was found in my blood but the biopsy revealed it. if one of your concerns right now is the h pylori why dont you discuss with your dr. if it is safe to give your son the antibiotic and proton pump inhibitor course for one week even without a positive h pylori bloodwork. i dont think it will hurt him at all, this is just my opinion.

even if i dont get definite answers and all my symptoms disappear with the h pylori eradication, i think thats it, im not willing to go back to the normal diet. it was really important for me to know in the biopsy that i have no malignancy or something more serious than celiac. gluten-free is a small price to pay.

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Thanks for the info gfp. yeah you're right the h pylori could have triggered the celiacs in me and my other symptoms are lingering because of this infection even if im gluten free. feeling better yesterday, my tummy felt normal and the gas problems are almost gone. by the way, im a filipino and celiac is very rare in my country that's why i keep looking for answers to my confusions. anyway, even if my doctor will tell me that i have no celiacs and that its the h pylori, i will not dare go back to gluten even if he asks me for a gluten challenge. im okay with the gluten-free diet, it was really hard at first but after 1 1/2 months i have adjusted completely to this diet and everything is a normal life now, i dont wanna complicate things further just to eat pizza or whatever glutened. if my gas symptoms disappear completely then thanks God and thats it, gluten-free for life.

Hi there,

If you feel better stick with it.

As for being Filipino, if you read Dr. Green's book celiac disease: A Hidden Epidemic, he says celiac disease knows no boundaries when it comes to ethnicity. It USED to be a predominately in Irish, English,...(Northern European), but now it is found eveywhere.

Good luck! I hope you keep getting better...

Jacqui :rolleyes:


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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Hi there,

If you feel better stick with it.

As for being Filipino, if you read Dr. Green's book celiac disease: A Hidden Epidemic, he says celiac disease knows no boundaries when it comes to ethnicity. It USED to be a predominately in Irish, English,...(Northern European), but now it is found eveywhere.

Good luck! I hope you keep getting better...

Jacqui :rolleyes:

Yep, lots of Spanish genes found their way into the Filipino gene pool... in either case its not completely limited to any racial group as Jaqui say's.

Look on the bright side, if its h. pylori its easily curable and then the diet will start making you feel better.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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hi rez, thanks for your support. i also feel for your son. the blood test for h. pylori can be false negative because it happened to me, nothing was found in my blood but the biopsy revealed it. if one of your concerns right now is the h pylori why dont you discuss with your dr. if it is safe to give your son the antibiotic and proton pump inhibitor course for one week even without a positive h pylori bloodwork. i dont think it will hurt him at all, this is just my opinion.

even if i dont get definite answers and all my symptoms disappear with the h pylori eradication, i think thats it, im not willing to go back to the normal diet. it was really important for me to know in the biopsy that i have no malignancy or something more serious than celiac. gluten-free is a small price to pay.

So glad you're feeling better. I'll let you know what we find out about my son. Good luck with everything! Ps. The doctor will be checking for H Pylori and something called EE, not familiar with that one. :)

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just saw my doctor as scheduled. he first told me "you should feel the difference by now" i told him i felt some improvement four days ago and he said "well that's good news, continue pariet for 28 days and i will see you in five weeks, four weeks with treatment and the fifth week without anything" then i asked him what about my previous diagnosis he said "forget about all those" and as i expected before he concluded my visit he said "GO BACK TO NORMAL LIFE AND EAT". as i left the clinic i felt empty and confused and told myself "nobody knows myself better than me and doctors are just for advices and medicines" and i have decided not to go with his advice, im staying gluten free for the rest of my life.

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