jhun

So hear me out here....

Have had a positive blood test a few times...I believe its the IGg that was positive cause my PC says its the less sensitive anti-body of the two. Went for an endoscopic biopsy which came back negative...so...based on convential wisdom, no positive biopsy, no celiac disease and no change to my diet.

Not long after this I came down with a WICKED painful intestinal infection diagnosed as mesenteric penniculitis (sp? / say that three times fast!!)....which is an inflammation of the 'fat" around the intestine. Lasted a few weeks and lost a lot of weight...like 15+ lbs. One of the suspected causes of this type of infection is an auto-immune response...so celiac is a possibility...but drs couldnt say for sure what caused it (idiopathic).

After that was done I started having some very persistant new symptoms including -

- Intense light-headedness / dizziness

- lots of gas

- floating stool

- occasional night sweats

Based on what I've read....all very much indicative of celiac problems.

Had another biopsy recently which still came back negative...BUT...recently found out that there is a family history of celiac (aunt, cousins, etc.).

So my question is this....

Can you have a negative biopsy and STILL have celiac disease???

Appreciate your input.

Tigano, I am one of the many posters here whom I know also had a positive blood and negative biopsy. I don't want to discourage you but based on your post everything seems to point to celiac. In my case it's harder to accept since I'm a Filipino with no one in the family having this disease. Celiac is unknown to my country and if you have celiac you will only be diagnosed with IBS like what happened to me. I just got proper diagnosis outside Philippines.

I was diagnosed by a GI doctor through blood and he said there is no need for a biopsy since I'm positive with lga and I have a raised ttg. Not satisfied I went to another doctor who did the biopsy that came out negative. He told I have no celiac and said "go back to your normal life and eat". I hesitated at first but later on I did some gluten challenges, it didn't make me sick in the beginning but later on all my symptoms of bloating and gas came back. So that's it, gluten free!!!

Been gluten free for 7 months. Positive blood work and negative biopsy but I went gluten free anyway. My problem is that my symptoms still persist although I have been treated for h pylori which i showed positive in the biopsy. also had gastritis and peptic duodenitis and was put on rabeprazole for three months or more i guess.

My gi doctor advises me to undergo a video capsule endoscopy. My insurance doesn't cover it and it's very expensive. What can it help me with in my case? By now I am very much aware of cc's and hidden gluten sources.

jenny, in your son's case it's pretty obvious and conclusive that your son is a celiac. there is really no point in doing a biopsy. in my case i insisted on the biopsy because after a month in the gluten-free diet my symptoms are not improving. the biopsy was negative for celiac but revealed h pylori that was treated with antibiotics and made all of my gastro symptoms disappear. now, it is just the blood work that has tied me to celiacs which is really confusing sometimes im getting tempted to stay out of the diet but i just keep on thinking about my health's future.

I don't understand. So you believe that you do not have celiac? does the doc think that also? What long term effects are you afraid of if you do not have celiac disease. Does anything happen when you eat gluten? Thanks for your input. Jennifer

See, after getting diagnosed through bloodwork i tried an elimination diet and gluten challenge i got hurt most with soy but i dont react with gluten at all. most of the people in this board says that if youre blood work is positive then you have it, so to be on the safe side and avoid the long term effects i prefer to stay gluten free although like what ive mentioned earlier i can eat gluten without any symptom flare up but who knows what its causing my intestines. most of the posters here also say that a negative biopsy doesnt mean a thing if you have a positive bloodwork.

same story with me but i was gluten-free for one month before biopsy. biopsy turned out negative for celiac but found gastritis and peptic duodenitis caused by h pylori, felt really good after the 1 week antibiotic course. doctor ordered me back on gluten but i decided to stay gluten-free even though i know that i can eat gluten without any problem i mean symptoms, its the long term damage im afraid of.

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.

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.

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.

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

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.

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.

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?

Hi Mel, the same thing happened to me before being diagnosed with celiac. I don't know if it has something to do with celiac. The first time I had bleeding I immediately saw a GI doctor and had a colonoscopy done, he diagnosed me with internal hemorrhoids but he said it is only grade 2 and he showed me in the colonoscopy video which seems to be just like a scratch and not real hemorrhoids at all. I get the bleeding when I have D instead of C. My bleeding stopped for 3 months and came back again, so I decided to see another GI doctor who also did a colonoscopy and saw nothing but scattered erythema and diagnosed me with chronic non-specific colitis. While consulting a 3rd GI doctor (the one who diagnosed me with celiac) I told him of the bleeding, he did a digital rectal exam and told me that he felt no mass and he saw no fissure. This remained like a mystery to me but I'm still looking for answers and I am discussing it with a 4th GI doctor who did my endoscopy for celiac.

This happened to me but just for a day, it is really embarassing and it feels like you have a gas factory that keeps on manufacturing gas to no end. The next day I did the lactose tolerance test which turned out positive so I eliminated dairy in my diet. The gas just magically went away. You could be lactose intolerant, try to eliminate dairy and see what happens.

I myself is not convinced about my diagnosis. I saw a 4th GI doctor today who agreed to do an endoscopy and a biopsy, probably I'll get it done by Wednesday. My 3rd GI doctor diagnosed me with celiac through blood work but didn't want to do an endoscopy and said that there is no point in doing it since I have a positive IgA and an elevated tTG.

Just like you my symptom is just gas, no cramps or nausea or diarrhea or whatever. I've been gluten free and lactose free for a month now with no significant reduction in belching and flatus. Since this diet is a lifetime commitment I want to be sure about it and get the gold standard of diagnosis.

Hello,

I need your help guys! I was diagnosed with Celiac through blood tests and now that I have read over all the possibilities, I don't know which blood test determined my fate! Sadly. I have been suffering with abdominal discomforts all my life. But, never anything that wasn't manageable. I am an runner and have been competing at the professional level for a few years. I felt pretty much great, but with the usual gassy, bloated belly for the majority of my life. I also have hypoglycemia. I manage all things through diet as I am an avid vegetarian and most days I'm completely vegan. I am 95% against all things Western medicine and have opted to be a devoted chiropractic patient for 15 years.

That is a little of my history. Now on to my diagnosis. My diagnosis suggested that I had Celiac. YIKES. Okay fine, I could deal with it. I mean controlling my diet is a Vegan's best friend. But now that I've been gluten free for 3 months I'm SICKER than I EVER have been. I am a label freak being a vegan and can spot even the most elusive wheat beast, as I have been spotting hidden animal products for ages. I almost always bring my own food everywhere. I doubt that I have been glutened more now than pre-diagnosis. Has anyone else experienced a greater increase in symptoms when going gluten free? I thought I was supposed to feel better. Not worse. I am thinking I was misdiagnosed and that I have some other GI disorder. Is there such a thing as just being gassy?

I would love to hear any suggestions! I am at capacity with my abdominal dysfunction at this point especially after 3 months of pure gas. I think my husband is ready to take up a tent outside!

Thanks!!!!

Suzy

Are you on the gluten-free diet now? If you are, then an endoscopy and biopsy will be useless, because your villi are healing. It is very likely that you'll end up with a false negative result, and the GI telling you that you definitely don't have celiac disease, based on the 'perfect' biopsy.

So, if you have been gluten-free, don't do the biopsy.

Really, if your bloodwork was positive, and you have responded well to the diet, that should be all the confirmation you need.

Hi Ursa, I've been in the gluten free and lactose free diet for a month now. I am eager to go for the biopsy because there are no significant improvements in my symptoms. I still have the borborygmi, belching and flatulence I had before going gluten-free. Do you think one month will affect the accuracy of the biopsy? My blood test showed like this:

Gliadin lgA (IFT) - (result) pos - (units) titer - (reference range) <1:10

Endomysium lgA (IFT) - (result) <1:10 - (units) qualitative - (reference range) <1:10

Anti tTG lgA/lgG (EIA) - (result) 1.21 "high" - (units) ratio - (reference range) <1.0

What do you think about my blood work? Is it really positive?

Hi to everyone and thanks for your thoughts. Hey Bubs you reminded me of my grandmother, yeah she's spanish, at first I was just thinking of my first degree relatives. Could be a possibility that I got the genes from her. She's suffering now from colon cancer, probably she also had celiac disease which led to her complications now. It's hard to get a diagnosis of celiacs in the Philippines since this condition is not well known there.

Planning to see a fourth GI for endoscopy and biopsy. My GI now doesn't want to do the procedure even if I insisted, he said there is no point in doing it. Just for my satisfaction I'm doing this.

I'm a Filipino diagnosed with celiac a month ago. Haven't heard of the condition all my life until last month. My symptoms are vague and mainly bloating, belching and flatulence. Since I was diagnosed I've been reading alot and browsing this forum everyday and found out that this condition is genetic, I am 100% Filipino and was wondering how did I get this disease.

In the Philippines, a GI diagnosed me with IBS then I saw a second GI who diagnosed me with chronic non-specific colitis, both of them did a colonoscopy. Now, I saw a third GI in the middle east who diagnosed me with celiacs through a german laboratory. I am not biopsy confirmed and my GI doctor said it is not necessary since I have a positive lga and an elevated tTG.

I don't know how I got it since all of my relatives doesn't have this problem at all, I am the only one I know as of now.

Some people have separate kitchen utensils and others don't. Personally, I have separate pots, pans and collander. We share silverware and plates which go in the dishwasher. We share a sponge to handwash everything and my husband does that so he wouldn't think twice about washing something covered in gluten and then washing my dishes. I don't get myself sick at home and I'm very sensitive, so I feel comfortable wiht how I do things.

I think some other people may have separate sponges so it is really what you are comfortable with. If you are not improving, what type of diet are you eating? Many people find they have other intolerances after going gluten-free. I highly recommend going back to basics and eating fruits, veggies, meats, and rice. There are many people that have problems with dairy. I found I can't tolerate potatoes, tomatoes, and chocolate. People were giving me this advice in the beginning and I resisted it. I had to cut things out of my diet and keep a food diary to figure things out. I would have saved myself some pain if I had listened sooner. Also, I wouldn't recommend eating out in the beginning. It can be tough to communicate with restaurants and I call that advanced gluten-free eating.

Lastly, I glutened myself a lot in the beginning because I just didn't know what I was doing. I now know that it takes me 3 weeks to feel 100% after being glutened. So, if you have only been on the diet for a month and you have glutened yourself a couple of times, you may still be feeling the effects from that.

thanks cassidy. i'm into wholefoods and i dont eat outside now. i have noticed one time that i reacted to soy when i eat it in large quantities like in soyabean cakes (tofu) but can tolerate it small amounts. i started my food diary just last week and hopefully it will help. im also lactose intolerant so dairy is also out of my diet.

what i was wondering is that my gas problems are still there although not like before but im still belching and farting a lot. i also have this new symptom which is a pain in my pelvic tail bone. im really confused if this is related to celiac disease.

is it necessary to separate my plates and cutleries away from the one's that my family use? same thing in washing them, do i have to wash them seperately with my own scrubbing pad and soap? does cross contamination happen in these ways? been gluten free for more than a month with no significant improvements.

I'm one month gluten free and five weeks lactose free. I was just wondering if it is safe at this time to use lactase enzymes since I'm really craving for chocolates. My GI prescribed a lactase enzyme and I bought a canister of 60 capsules (very expensive though) but did not touch it till now cause I'm afraid that it will affect my healing.

My doctor also told me that I can eat dark chocolate. I saw only one dark chocolate made by Lindt 85% cacao but the label says "may contain traces of hazelnut, soya lecithin and milk". Does it mean that the contamination is caused by using same equipment for all their chocolates? The ingredients did not mention those three items though.

Guys thanks for all the information, I really feel relieved to communicate with people who knows what I'm talking about. Well, yesterday I saw a nutritionist who advised me to do a biopsy just to check the damage and see if there is nothing else wrong with my small intestines but I think I have decided not to have one since its a bit too late and I'm afraid to go back to gluten not because of the symptoms but the damage it will cause me. I'm a month gluten free and my symptoms seems to be improving slowly but I can feel the difference, now the pain in my lower left abdomen is gone, headache is gone, bloating is minimal though I still belch a lot and gassy in the afternoon.

I really appreciate all your help and I'm really glad to be here in this forum though am not glad to be a celiac.

will a one month gluten free diet affect the accuracy of a biopsy? i am really depressed now because here in UAE nobody even knows what celiac is that's why it took me three doctors, two colonoscopies, lots of blood, stool and urine tests, ultrasounds, x-rays including ivu before i was diagnosed with celiac after 10 months of exhaustive consultations. the first doctor diagnosed me with IBS, the second diagnosed me with non-specific colitis (he did a biopsy of my colon) and finally the third doctor (UK educated) diagnosed me with celiac but he did not suggest a biopsy of the small intestine.

it is really hard to have this disease in this country since nobody supports it, there is only one shop that sells a few gluten-free foods and to reach there needs a good two hours drive. there is also no support groups here. i just feel lucky to be an asian since our staple is rice but it really troubles me when dining out which seems to be impossible for me now and when i shop for groceries i just have to rely on my instincts when it comes to bottled and canned foods because i don't trust the labelling of products here since people here doesn't know what are the consequences of wheat to a celiac. yesterday i saw a rice cracker with an ingredient of wheat (gluten free) i don't understand how can wheat be gluten-free.

it's only in this forum i felt that i could express my feelings, receive moral support and clear all my confusions.

i'm diagnosed to have celiac disease two weeks ago and was also positive in the lactose tolerance test. my serology test showed a positive AGA (anti gliadin), high tTG (anti-tissue transglutaminase) and a normal EMA (anti-endomysial...) i just want to know if these results are conclusive of celiac disease. i was just thinking of having a biopsy done to be 100% sure. your inputs will be highly appreciated.