Confused About Diagnosis

[Natters]

A little backgrund...I have had a lot of GI problems for a little over 5 years. When the symptoms began then, I had an endoscopy done and was dx and treated for H. Pylori. Now 5 years later, a second child, a gallbladder removal the symptoms were even more intense. I had a colonscopy at that time due to bleeding and bowel problems and was dx with colitis. I was treated with steroids for a month. Things still didn't improbe so I went to my primary care and told her about my symptoms which included abdominal swelling, diarhea, cramping, joint pain, anxiety and unable to focus. The blood test she did included deamindated Gliadin IGA, IGG and tTransglutaminase IGA & IGG. All were negative except for the Deamindated Gliain IgA came back at 49 with the moderate to strong positive being over 30. Since then I had one Gastroentrolgist that wanted to give meds for diarhea but no biopsy and another that just wanted to do a genetic testing, which came back negative. I convicned him to do the endo and biopsy and now awaiting results. I talked with the office and they told me they usually get the positive results right away and I am now assuming mine was negative. Is it possible to have a positive blood test but a negative biopsy results? One more thing I forgot to mention in my background...I have many food groups that I test positive for (skin test) and wheat is one of them.

Thanks for taking the time out to read my post and give feedback.

[mushroom]

Welcome, Natters.

Yes, a positive blood and negative biopsy is absolutely possible. Also the other way around. The Deamidated Gliadin Peptide is one of the newer tests and seems to yield more positives than some of the older tests (just a personal observation). The biopsy depends on the skill of your GI as to whether he recognizes what he sees when looking through the scope and thus recognizes areas to biopsy, whether he takes enough samples because the damage is not uniform throughout the small intestine and can be missed, and the skill of the pathologist reading it. You were right to reject the pills and demand the scope and biopsy. In the genetic testing they usually only test for DQ2 and DQ8, but there are other genes associated with celiac disease which are not commonly recognized in U.S. medicine. There are also genes associated with non-celiac gluten intolerance (which is the situation where all your testing is negative but you still react negatively to gluten).

I hope you get a definitive result from your biopsy, but even if you don't you still have a positive blood result which most of us would consider to be a diagnosis of celiac. With your GI problems of five years' duration and a positive blood test you should start on the glutn free diet immediately - don't even wait for the results. In my book you are a celiac and need to avoid all gluten..

[Natters]

Neroli...

To add to the previous post, the positive blood test result was actually after being gluten free for 2 months and still having GI symptoms. I started to notice that milk bothered me so I thought I was completely wrong in thinking it was gluten and started thinking maybe it was something else, which is why I asked my PCP to test. I was surprised to get the positive result.

I see you have also eliminated a few other things from your diet. Do you just do it because you notice them bothering you or was it from other tests? I test positive to soy, all nuts (except for peanuts), mustard, raspberry and a few others that are mild. This is the reason why I wanted to get a definite diagnosis cause I have a lot i have to try and avoid....almost absolutely no eating out.

Thanks for your response and can't wait to give the gluten-free diet a try again while I wait for biopsy result. BTW, when on the gluten free diet, minus the occasional cramping from dairy, I had more energy, staying up later than I used to, less abdominal discomfort and overall feeling better so regardless, I guess I will make the life long change to going gluten-free.

[mushroom]

If your testing was positive after two months gluten free, you are definitely positive That GI who wanted to give you meds for your symptoms was an idiot!

If you have damage to the villi in your small intestine you will have problems digesting the lactose in milk because the enzyme for it is made in the area that is damaged. You should eliminate lactose for a good six months. You may still be able to tolerate other dairy that has had the lactose predigested by cultures, like yogurt (gluten free) and hard cheeses.

I had already known I was lactose intolerant before I stopped eating gluten. The other things I found out by trial and error (lots of errors). It is only when I started to see a pattern emerging that I twigged. I had had a skin prick test earlier which showed mild positives for corn and soy, and it was the good folks on this board that told me to ditch the soy (added to a lot of processed gluten free products). That got rid of 50% of the itching and rashes but it took me the longest time to figure potatoes. I cut out most nightshades because of my RA, but would occasionally indulge in a BLT (raw tomato was okay at first) and one night I had half of hubs' baked potato. At 2 a.m. I woke up with intense itching and hives. Just to be sure, I waited a few days and then did it again with the same result. Then I got to thinking about it and realized that all the gluten free flour mixes I was using contained potato starch, and I realized that that was why I was still itching. Once I eliminated that the itching went away. But then the itching and hives came back a year or so later and I traced it to eating too much citrus; cut out the citrus and it went again. Corn for me gives me the same bloating and diarrhea as gluten so I don't think I will eat that again, but I am hopeful of being able to add some other things back in later.

Not all the foods you test positive to on the skin test have to be avoided. Is that what you had, or did you do the ELISA blood test? It is probably a good idea to eliminate them for a while until your immune system's hyperactivity settles down, and then you can challenge them one at a time and find out if it is for real.

I didn't eat out for six months after I went gluten free. We still don't eat out a lot because I get tired of ordering salads With alll the things I can't eat there's always SOMETHING in a dish that I can't have!

[ravenwoodglass]

If your DGP (the best test we have at present) was that high after two months gluten free I can only imagine what it would have been if you were still on gluten. Your being gluten free for that long, or even gluten light would cause the ohter tests to be a false negative. Do get on the diet strictly and don't look back. Also while most celiacs have one of the two genes they test for not all do, do not go by the gene testing as a firm you do or you don't.

[Natters]

Update...Well, the new GI doctor did all the tests including an endoscopy. The biopsy results and all the tests including the genetic markings came back negative. As far as he is concernced based on what he has, I am not a candidate for celiac. However; they are asking me to do the gluten-free diet to see if it will help and in addition to that after I am done nursing my little girl if symptoms don't improve they would like to try a medication they normall use for their IBS Patients. I had asked them to repeat the test group of IGA/IGG that were done in the beginning that showed a high positive and somehow they failed to test the deamindated gliadin IGA so I will never know if that would have gone up since I was on gluten. The others were all negative...

I have started my gluten free diet as of yesterday and will keep everyone posted. Thanks again for the support and sharing your stories and ideas.

[ravenwoodglass]

Glad to hear you are going to give the diet a good strict try. I hope it helps your issues.