Positive Ttg, Negative Biopsy

[musikate]

Hi,

My physician just sent me a letter stating, "Your tissue transglutaminase antibody was positive; however, biopsies of you terminal ileum as well as your small intestine from above were within normal limits ruling out celiac sprue."

He diagnosed me with IBS (diarrhea-type) two years ago. I have been in and out of hospitals for severe diarrhea with intractable abdominal pain for three years. I've lost my job, my marriage, and have felt suicidal and exhausted for years. I have been chained to a toilet. I even had a hysterectomy in a misguided attempt to alleviate the pain! Despite these symptoms, he still believes, "Personally, I do not feel that you have celiac sprue."

I researched a little on the internet, and I decided to try a gluten-free diet two weeks ago. Within days, my energy level and mood began to improve. I am off the pain meds, and I have a little pain and diarrhea left, but not nearly as much. I put my kids on the diet, too, because my 5-year-old has always had loose, floating, green, pale, and awful stools. They have begun to improve, as well.

My question is: do I have celiac disease or not? After all, the doctor is the chief of gastroenterology at Temple University. If so, shouldn't I be eligible to see a dietition? And shouldn't that doctor be liable for malpractice if he misdiagnosed me?

Thanks,

Kate

[lovegrov]

A positive Ttg and a postive reaction to the diet equals a diagnosis in some doctors' books. Any idea how many samples this doctor took? The samples he took could have missed the damage, which is easy to do. Anyway, if the diet is the only thing making you better given what you've been through, would you really want to go back to eating gluten?

I'm not a lawyer so I can't tell you about malpractice. I know it's not easy to prove.

As for a dietician, very few know a whole lot about celiac. You'll probably learn more on the Internet.

richard

[KaitiUSA]

tTG detects damage in the intestine and is a very accurate test.

Biopsies can rule celiac in but can't rule celiac out. There could be sporadic damage they missed or in beginning stages.

Dietitians are not too good. Many know less about it then doctors. Doctors are also not up to speed on celiac and many misdiagnose and miss it completely. Especially since you do not have to have any symptoms at all with it.

I think that you have it for sure. The tTG test is actually getting ready to take over place of diagnosis in kids instead of biopsies. Highly accurate.

You should definitely be gluten free.

[lbsteenwyk]

I've read that biopsies should be taken from the 3rd portion of the duodenum, not the terminal ileum. If I only had a positive TTG and felt better on the diet, I would assume I had celiac disease and remain gluten-free. If you have a good pediatrician, you may be able to get a diagnosis for your son before you put him on the gluten free diet. I would demand a full celiac panel for your child; if it comes back positive, you could also feel more confident in your own diagnosis.

[lbsteenwyk]

Here is the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

[VegasCeliacBuckeye]

It is also possible to be gluten intolerant and not have Celiac Disease.

It is common on this board!!!!!!

[FaithInScienceToo]

Biopsy samples must also be cut at a proper angle, taken from various places, and then 'read' properly too...these are add'l reasons why a negative biopsy cannot rule out celiac disease 100%.

Gina

[Nevadan]

You might want to do a DNA test to help you understand your situation. I had Enterolab do mine and it came out that I was gluten sensitive (which like you I had already figured out by eliminating it from my diet) but not likely to ever have celiac disease type damage to the small intestine. I have two DQ1 genes. Nevertheless I was dx'ed with osteoporosis 5 yrs ago (I'm curently a 60 yr old male) and have had marginal anemia forever. Enterolab also found no malabsorption, so I'm still wondering about the osteo and anemia. I think I read somewhere that there is evidence that gluten can interfere with the body's processing of calcium without celiac disease and classic malabsorption.

Hope this helps.

George

[sudowestling]

Hi! Well you are talking to one of the rarest cases for being diagnosed with Celiac Disease. In fact one of my specialists asked if he could discuss my case at a conference at Loma Linda he was presenting at (he was from Calgary Alberta Canada). I was very ill over a 3 year period, in and out of the hospital during this period anywhere from 3 days to 3 months. During this 3 year period I had four different biopsies done all came back negative. I was getting sicker and sicker. An exploritory surgery was done and 3ft of my small intestentine was not working. I was basically had no muscle tone and was flacid. The surgeon was flabbergasted because he had never seen anything like it before. I was closed up and a meeting of several doctors were held and a consultation with doctors at the Mayo Clinic in Rochestor N.Y. It was decided that the best thing for the affected bowel be removed. Of course all sorts of tests were done on the tissue. Well almost fell off his chair when he got the results back, infact he called the lab to verify the results. He asked them to retest the tissue to make sure there was not a mistake made. He wanted the results back stat! Well they came back the same, I had Celiac Disease. When he told me, I just looked at him and said I gues a few more doctors will believe me when I tell them I KNOW there is something wrong. But it just goes to show you there is always an exception to the rule. But I know people who have had one negative biopsy before getting a positive one. So there are those who do have negative biopsies and still are Celiacs.

Janyce Sudo

[Merika]

The blood tests are very very accurate. The biopsies less so. Given your history, it seems prudent to go gluten-free. My grandmother (celiac) also had a hysterectomy, and I understand they are not uncommon in undiagnosed celiacs as a misguided "cure" for something.

It seems you have nothing to lose by going gluten-free, and everything to gain. Go for it

Merika

[jknnej]

Oh, it sounds to me like you have it. I'm not a dr but it really does sound like you have it. I would stay gluten free-make a committment for six months or so. It takes awhile to feel better...some people that were really sick it takes a year or more. But if you're already improving, I would stay on the diet. After all, you've already had your biopsy done; you've nothing to lose except your stomach aches!!!