Ttg And Negative Biopsy

[Guest laferriere]

Hi All. I am new to this board and have finally decided to take the plunge and ask a question. Like so many of you I have had digestive issues since I was about 13 and have been diagnosed with colitis and then just "irritable bowel syndrome". I've been MOSTLY healthy all my life, have been a runner for 26 years and a dancer almost as long but I've ended up at gastroenterologists more than I've cared to with recurrent issues; no one ever helps. This last year I had THE WORST digestion ever, tons of pain, especially at night, about the time dinner would hit my lower intestines. I saw a new gastro and he's the first to ask if I'd been tested for celiac. He ordered anti-tissue transglutaminase and Iga and it came back mild positive. (28 Normal range: 0-19) I had stopped eating wheat 2 and one half months before this test just under advice of my acupuncturist. (And my own intuition-I had stopped wheat 3 years ago as a trial and had a very good 1 and a half years!) I only went back on wheat after reading about the soluble fiber irritable bowel diet. For six months I put a TON of breads, pastas, crackers and did really well, actually, until six months later when all hell broke loose and I had the worst year ever. Anyway, I guess my gastro is of the "Gold Standard" school and my biopsy came up negative, also the colonoscopy. (And, yes, I know I should have been consuming gluten, but after I'd taken it out I had an EXTREMELY bad three nights after putting it back in. I do know this probably skewed the biopsy, but I also figured he'd better see if something else was going on.) My intuition says if this isn't celiac it's absolutely a gluten-sensitivity although I can't seem to get any answers as to why my body would be making antibodies against itself for no reason. I intend to stay gluten-free to see if I continue to feel better. I have two children, 16 and 13. I'm wondering if I should blood test them or do another type of testing? They are both healthy but I do want to know if they're at risk. Thank you all for this board; you've helped me understand a lot!

[Rachel--24]

Was it the Ttg that came back positive or the anti-gliadin Iga? A positive Ttg = Celiac. I wouldnt exactly call yours a weak positive....especially since you'd been on a gluten free diet and still had positive test results.

A negative biopsy doent rule out Celiac...the test is very flawed and often comes back with false negatives. They can easily miss damage or in your case there may not have been any due to restricting gluten in your diet.

Sounds like you're going to be following the diet anyway...which is good. It really doesnt matter whether you have a sensitivity to gluten or Celiac because the treatment is the same. I would assume Celiac due to the positive bloodwork. You can also get genetic testing done and if you carry a Celiac gene you can be even further assured of a diagnosis of celiac disease. Enterolab does gene testing....I think its $150

[ravenwoodglass]

Hi All. I am new to this board and have finally decided to take the plunge and ask a question. Like so many of you I have had digestive issues since I was about 13 and have been diagnosed with colitis and then just "irritable bowel syndrome". I've been MOSTLY healthy all my life, have been a runner for 26 years and a dancer almost as long but I've ended up at gastroenterologists more than I've cared to with recurrent issues; no one ever helps. This last year I had THE WORST digestion ever, tons of pain, especially at night, about the time dinner would hit my lower intestines. I saw a new gastro and he's the first to ask if I'd been tested for celiac. He ordered anti-tissue transglutaminase and Iga and it came back mild positive. (28 Normal range: 0-19) I had stopped eating wheat 2 and one half months before this test just under advice of my acupuncturist. (And my own intuition-I had stopped wheat 3 years ago as a trial and had a very good 1 and a half years!) I only went back on wheat after reading about the soluble fiber irritable bowel diet. For six months I put a TON of breads, pastas, crackers and did really well, actually, until six months later when all hell broke loose and I had the worst year ever. Anyway, I guess my gastro is of the "Gold Standard" school and my biopsy came up negative, also the colonoscopy. (And, yes, I know I should have been consuming gluten, but after I'd taken it out I had an EXTREMELY bad three nights after putting it back in. I do know this probably skewed the biopsy, but I also figured he'd better see if something else was going on.) My intuition says if this isn't celiac it's absolutely a gluten-sensitivity although I can't seem to get any answers as to why my body would be making antibodies against itself for no reason. I intend to stay gluten-free to see if I continue to feel better. I have two children, 16 and 13. I'm wondering if I should blood test them or do another type of testing? They are both healthy but I do want to know if they're at risk. Thank you all for this board; you've helped me understand a lot!

I agree you should stay gluten free. As to testing your kids please do. I was surprised how much gluten impacted my and my childrens lives in ways I never thought were related. Do test them without hesitation.

[Guest laferriere]

Was it the Ttg that came back positive or the anti-gliadin Iga? A positive Ttg = Celiac. I wouldnt exactly call yours a weak positive....especially since you'd been on a gluten free diet and still had positive test results.

A negative biopsy doent rule out Celiac...the test is very flawed and often comes back with false negatives. They can easily miss damage or in your case there may not have been any due to restricting gluten in your diet.

Sounds like you're going to be following the diet anyway...which is good. It really doesnt matter whether you have a sensitivity to gluten or Celiac because the treatment is the same. I would assume Celiac due to the positive bloodwork. You can also get genetic testing done and if you carry a Celiac gene you can be even further assured of a diagnosis of celiac disease. Enterolab does gene testing....I think its $150

Rachel,

Thank you for your reply. It was a positive tTg and my intuition kind of suspects celiac as well, given the symptoms and my history. I'm not sure if I should get my kids' pediatrician just to order the celiac panel before the genetic testing. I do have good insurance, but I haven't found out how much all this testing has cost yet. Thank you again!

lisa

[Guest nini]

in my opinion (which doesn't amount to much ) a positive tTg especially if you've been wheat free/gluten-free for a while is an absolute positive for Celiac... you don't need any further confirmation for yourself... have the kids tested, but know that they can be genetically predisposed to it without actually having it YET it usually takes something to trigger it, or the tests may not be sensitive enough to detect it in early stages if they aren't showing symptoms yet. Many people can have this without any obvious symptoms... So, I would have them screened with the complete Celiac panel, I wouldn't worry about the biopsy, it misses damage too often to be considered a valid diagnostic tool, it can ONLY rule it in, it can never ever rule it out. Many people have had great results from Enterolab as an alternative testing that is also valid.

[CarlaB]

I was off wheat for three years, and my blood test and biopsy came back negative. I went to Enterolab and my tTg came back very high. I feel like a different person once I got off gluten (and casein, which Enterolab tested and found I was sensitive to). I agree with everyone else that if the tTg was positive and you're feeling better off gluten, that you need to stay off it permanently.

[Guest laferriere]

I was off wheat for three years, and my blood test and biopsy came back negative. I went to Enterolab and my tTg came back very high. I feel like a different person once I got off gluten (and casein, which Enterolab tested and found I was sensitive to). I agree with everyone else that if the tTg was positive and you're feeling better off gluten, that you need to stay off it permanently.

Thank you all so much for your response; everyone is so helpful here. I now must work on my extended family, particularly Mom, to understand the gluten issue. By the way, I did read "Dangerous Grains" by James Brady and Ron Hoggan and I HIGHLY recommend it. I wish I could afford to carry around copies to pass out to whoever would read it!

lisa L.

[wolfie]

Hi and welcome! I agree with what everyone said and please have your kids tested. I only had a positive IgG test (all other tests were negative) and had a very positive dietary response....Celiac or gluten sensitivity? Doesn't matter to me, I feel MUCH better. I finally convinced my kids Ped to test my DS (10) to rule it out. It took me 6 months to convince him b/c I was not "classically" diagnosed by biopsy and he wanted that diagnosis before he tested my kids. Well, DS came back highly positive with a tTg of 222 (supposed to be under 20). Ped was shocked that it came back positive and said so. Now he agreed to test DD (3.5), too. They both see him again on Tuesday and DS has a GI appt Aug 15th to see if he needs a biopsy or will just go gluten-free.

[Guest laferriere]

Hi and welcome! I agree with what everyone said and please have your kids tested. I only had a positive IgG test (all other tests were negative) and had a very positive dietary response....Celiac or gluten sensitivity? Doesn't matter to me, I feel MUCH better. I finally convinced my kids Ped to test my DS (10) to rule it out. It took me 6 months to convince him b/c I was not "classically" diagnosed by biopsy and he wanted that diagnosis before he tested my kids. Well, DS came back highly positive with a tTg of 222 (supposed to be under 20). Ped was shocked that it came back positive and said so. Now he agreed to test DD (3.5), too. They both see him again on Tuesday and DS has a GI appt Aug 15th to see if he needs a biopsy or will just go gluten-free.

Hi!

Thank you for your response. After having many symptoms improve greatly or at least improve somewhat over the past 3 to 4 weeks, I feel I'm sliding back again and I'm so confused and frustrated! From what I've read I understand this can happen, but I REALLY don't think I've had any gluten; I prepare all my food myself from whole ingredients with the exception of Erewhon's gluten-free Crispy Brown Rice. I also am having no soy, dairy or egg. I've had two bad nights with the weird small intestine type bloat and feeling of strange gaseousness and some of that fun left-side pain as well. Because I had what was considered a "mild" positive ttg test- 28, (scale of normal range:0-19), and a negative biopsy, (after actually close to 4 weeks gluten-free with the exception of 4 days in there in the middle), I can't help wondering if some other thing is going on or if I just need to be VERY patient. Like the rest of you! One thing I've read a little about is "systemic candidiasis". Many symptoms seem similar to celiac, although the celiac description more accurately seems to define my symptoms. I suppose with all the imbalances things could be out of whack with good and bad bacteria as well. I have taken probiotics, however, for about 3 years, stopped in the last 5 montyhs while trying to find one gluten-free. (just did) Does anyone know anything about any of these things? I'm sorry to go on and on but I also don't know when I should think maybe it's not celiac. I have read an elevated anti-tissue transglutiminase test can also show up in Crohn's and Inflammatory Bowel Disease, but where I've just had an upper endoscopy and biopsy, also a colonoscopy, I think they would have seen that. Also, I have more trouble with constipation than extreme diarrhea so I don't THINK I have those two things. I am considering the Enterolab testing just to see how to proceed and to question the biopsy. Thank you ahead of time to anyone who reads this whining mess! May everyone feel much better soon!

lisa

[penguin]

It's my understanding that it's the IgG, not the TtG, that can be elevated in Chron's and UC, and those are both IBD's. The IgG is the most sensitive in the panel, but the Ttg is the most specific to celiac. In a normal person, those levels should be close to zero. Your "weak positive" is still positive, so sorry, you have celiac! Many biopsies come out negative because the damage isn't always in the duodenum or close to it, it is often further down in the small intestine. The endoscope can only go 5 feet into the small intestine, but the small intestine is 22 feet long.

And yes, it's very slow going. Feel better!

[Guest laferriere]

It's my understanding that it's the IgG, not the TtG, that can be elevated in Chron's and UC, and those are both IBD's. The IgG is the most sensitive in the panel, but the Ttg is the most specific to celiac. In a normal person, those levels should be close to zero. Your "weak positive" is still positive, so sorry, you have celiac! Many biopsies come out negative because the damage isn't always in the duodenum or close to it, it is often further down in the small intestine. The endoscope can only go 5 feet into the small intestine, but the small intestine is 22 feet long.

And yes, it's very slow going. Feel better!

Chelsea,

Thank you. Yes, it does seem a positive is kind of "positive", even though it's negative. Ha, ha. I think I read that you are on a gluten-challenge right now? Much luck to you and YOU please feel better soon!

lisa

[wolfie]

Hi!

Thank you for your response. After having many symptoms improve greatly or at least improve somewhat over the past 3 to 4 weeks, I feel I'm sliding back again and I'm so confused and frustrated! From what I've read I understand this can happen, but I REALLY don't think I've had any gluten; I prepare all my food myself from whole ingredients with the exception of Erewhon's gluten-free Crispy Brown Rice. I also am having no soy, dairy or egg. I've had two bad nights with the weird small intestine type bloat and feeling of strange gaseousness and some of that fun left-side pain as well. Because I had what was considered a "mild" positive ttg test- 28, (scale of normal range:0-19), and a negative biopsy, (after actually close to 4 weeks gluten-free with the exception of 4 days in there in the middle), I can't help wondering if some other thing is going on or if I just need to be VERY patient. Like the rest of you! One thing I've read a little about is "systemic candidiasis". Many symptoms seem similar to celiac, although the celiac description more accurately seems to define my symptoms. I suppose with all the imbalances things could be out of whack with good and bad bacteria as well. I have taken probiotics, however, for about 3 years, stopped in the last 5 montyhs while trying to find one gluten-free. (just did) Does anyone know anything about any of these things? I'm sorry to go on and on but I also don't know when I should think maybe it's not celiac. I have read an elevated anti-tissue transglutiminase test can also show up in Crohn's and Inflammatory Bowel Disease, but where I've just had an upper endoscopy and biopsy, also a colonoscopy, I think they would have seen that. Also, I have more trouble with constipation than extreme diarrhea so I don't THINK I have those two things. I am considering the Enterolab testing just to see how to proceed and to question the biopsy. Thank you ahead of time to anyone who reads this whining mess! May everyone feel much better soon!

lisa

It is going to take a while to heal. As many say...the damage doesn't happen overnight, it takes sometimes 1-2 years to completely heal, if not longer. I was the same as you 1 month in. Now I have MANY more good days than bad. Also, a negative biopsy doesn't rule out Celiac....as Chelsea said they may have missed the damaged area. The biopsy can only rule in Celiac if it is positive. Hang in there and stick to it. It sounds like you are on the right track.

[utdan]

I've had spotty sensitivity to gluten as well but recently I was going to get a tTG test and had to eat a little gluten. I only opened myself up to a little contamination and took a bite off a graham cracker. I didn't have much bowel trouble but I did have an a lot of brain fog and confusion. My tests for Antidemysial antibody came up 0.4 (positive = 7) and a tTG of 0.5 (positive =7). So I had negative bloodwork but still got a big reaction out of eating it. The reaction to the cracker was so bad that I just couldn't eat the gluten for the test. Maybe that's why the test came up negative, but either way I have to avoid it. I don't know your situation but if you feel better without the gluten then maybe its worth avoiding.

[Guest laferriere]

It is going to take a while to heal. As many say...the damage doesn't happen overnight, it takes sometimes 1-2 years to completely heal, if not longer. I was the same as you 1 month in. Now I have MANY more good days than bad. Also, a negative biopsy doesn't rule out Celiac....as Chelsea said they may have missed the damaged area. The biopsy can only rule in Celiac if it is positive. Hang in there and stick to it. It sounds like you are on the right track.

Kim

That's very interesting to me about your children. I need to have mine tested and I'm trying to figure out the best way to go. They are 16 and 13 and have no symptoms, (although my son has enlarged adenoids and chronic sinus infections this year.), however, I don't want to take any chances. I guess I should just ask their ped for a complete celiac panel. Thank you for your kind responses.

lisa

[wolfie]

Kim

That's very interesting to me about your children. I need to have mine tested and I'm trying to figure out the best way to go. They are 16 and 13 and have no symptoms, (although my son has enlarged adenoids and chronic sinus infections this year.), however, I don't want to take any chances. I guess I should just ask their ped for a complete celiac panel. Thank you for your kind responses.

lisa

My son doesn't have the "typical" symptoms and it was very hard to convince his Ped to test him. He has occasional constipation, anxiety, ADHD like symtpoms and stomach pain 4-5 days per week. He has always been thriving, though, so the Ped didn't think there was any reason to test him. Boy, was he wrong. I just hope that this has opened his eyes to Celiac and that you don't have to present with the classic symptoms to have it.

So, yes, ask their Ped and if he won't do it, ask again. LOL!! It took me almost 6 months to convince mine.