[Siea]

I have done both a blood test and then also a gastroscopy. Both said I was healthy.The bloodtest isn't reliable at all but what about the gastroscopy, where they took small bits from my insides?I heard that it is a reliable test but then I also heard someone who said it was useless since the sample is taken from the stomach while the problems occur in the small intestines.What is correct here?

 

[Kathleen M.]

Are you sure they didn't put the scope a little bit further than the stomach and took the samples from the small intestine?Because they use the same scope to do both things, check the stomach and the first part of the small intestine where they take the celiac samples. The only way to get to the first part of the small intestine is down the same way they look at the stomach. They don't go in from the side and from the back end only sees the last bit of the small intestine and that is where they test for Crohn's not Celiac.

 

[Siea]

Are you sure they didn't put the scope a little bit further than the stomach and took the samples from the small intestine?Because they use the same scope to do both things, check the stomach and the first part of the small intestine where they take the celiac samples. The only way to get to the first part of the small intestine is down the same way they look at the stomach. They don't go in from the side and from the back end only sees the last bit of the small intestine and that is where they test for Crohn's not Celiac.

Thanks for the answer.I don't know, maybe it was the small intestine. The doctor tested for celiac disease so he should probably know this^^I got confused since I read about it not being reliable on some other internet site I found googleing.But lets assume they did the test correct.How accurate is the gastroscopy for celiac disease?

 

[searching4answers]

what makes you think the blood test isnt reliable?

 

[Kathleen M.]

Well the taking a sample from the small intestine with the scope from the top is the gold standard for diagnosing celiac so as long as they weren't looking at stomach samples (which have no villi to look at so would make no sense to even look at those) it should be pretty definitive.Unless you were on a gluten free diet for long enough to put your symptoms into remission before they took the samples.Once you are in remission the villi grow back, it isn't permanent, but reversible.There is some discussion of how many biopsies and what locations you need, but there isn't some better test out there.Usually the blood tests are compared to the biopsy to determine how reliable they are and usually they aren't 100% identical to the biopsy. Depending on what blood test they may miss some people or over diagnose celiac by a few percent. That is why the blood tests are used for SCREENING and the biopsy is used to CONFIRM.Again, being on a normal diet including gluten at the time of the blood tests increases the reliability.The problem is some people have non-gluten problems with wheat and assume that if they stop eating wheat and feel better all the tests must have been wrong. They weren't wrong, they just were looking for a different problem than the "but I quit eating wheat and felt better despite the doctor" people appear to have.Many people with IBS have a big problem with resistant starch (which wheat has in abundance) so feel better on a low carb diet, not because they eliminated every last trace of gluten from their diet including any cross contamination from food prepared in a facility that has wheat in it, but because the eliminated the starch that was causing the problem and the threshold for trace starch and other things in wheat for the starch intolerant is usually much higher so much easier to accomplish than total removal of all gluten from the diet.Many celiacs have difficulty getting into remission as they still get some cross contamination somewhere. People with wheat starch issues tend to feel better much faster and tend to find they don't have to be as cautious with their diet and small amounts of cross contamination do not bother them.

 

[catarific]

Kathleen is correct. If you were eating gluten regularly before the test - the chances are the test is probably reliable. But, if you were gluten free prior to testing - then you could get a false negative. Also, if in fact, the test results are really negative, you still may have a gluten sensitivity. If that is the case, and you stay away from gluten and feel great, then do not eat foods with gluten. You could have IBS with a gluten sensitivity. With IBS, you need to play detective and stay away from those foods that cause problems. Same goes with gluten sensitivity. With gluten sensitivity there can be malabsorption issues when eating starch, grains, night shade vegatables (potatoes, tomatoes, etc.). Staying away from gluten foods can actually help clear up these issues.

 

[wayneeric]

I see that it has been awhile since anyone has been on this thread. Hopefully, I will generate some additional conversation. I am a surgical assistant, so I may able to help some people with medical questions. But, I am hoping I can get helped with my dilemma. In the last year and a half my weight has crashed from 210 to my current weight of 149. I seem to plateau and then crash again. I was running at 160-165 for most of last fall. Then from December and until now I went on another weight loss spell, going from that 160-165 to 149-152. I am fatigued and have very severe bouts of abdominal cramping with occasional symptoms of watery diarrhea. There have been times, not always though, when I would get a rash on both legs when I had the abd. pain and diarrhea. Most times I have not had the rash with it. My biggest concern is how ill I feel and how much weight I am losing. I am a 6' 1" male who has not weighed under 150 since I was in my early teens. My ideal weight is around 175-180. I am always hungry. I feel like I am starving. I force myself to eat so I know I am getting the appropriate amount of calories. But, these lower abdominal cramps are awful and is getting more and more difficult knowing I might have to face a bout of that severe pain whenever I eat. I have been tested both with blood work and an EGD (upper scope) to rule out Celiac disease. I had the Endomysial IGA and the TI IGA test and was told it was not Celiac. The mistake I made was getting off of Gluten on my own. Before the endoscopy and blood work, which is a no-no. Since the small bowel regenerates in as little as three days you can have false negatives. My big problem is that both of the GI docs who I have gone to, both friends and former colleagues, from the get-go poo-pooed even the proposition that I have Celiac Disease. I have read in scientific literature that there are scores of people who have been wrongly ruled-out for Celiac. I have also met quite a few older, 35+, who were told that they "did not" have Celiac disease only to find a sharp doctor out there who ended up diagnosing them with CD and changing their lives for the better. God knows I do not want to have ANY disease. I have battled back from multiple spinal cord surgeries and am working on getting either my medical degree or a degree as a Physician Assistant. This being so sick is not helping at all. Now being just under 150 is just way to much weight loss. I look very ill. Both my buddies have the thinking that it is a malignancy. I am now being checked for Carcinoid Tumor/Syndrome, which can have very similar signs and symptoms. But, I just have this feeling it is not a Carcinoid Tumor. I honestly think it is Celiac or Crohns. Any comments or advice would surely by appreciated.Believe or not, my expertise is in Gastroenterology. I am only an assistant, with a degree in Surgical Technology. So, of course I am not as "smart" as my pals with the medical degree. But, I do know my own body and losing all this weight and feeling so awful sure is an indication that something is wrong. I hate that I elminated Gluten from my diet before my biopsy and blood tests. I think I need to re-introduce fully to my diet and get re-tested. Any opinions out there?I read another post asking where the biopsy was taken. When you do an "upper endoscopy," the scope goes through the esophagus into the stomach through the pylorus, and then to the second part of the duodenum (first part of the small intestines). Multiple biopsies are taken in the duodenum, especially when trying to microscopically assess the small intestines looking for tissue changes for things like Celiac Disease. The tissue taken is very small. It could fit on the fat end of a large sewing needle. Other possible biopsy sites are the stomach and esophagus are taken, which assesses for gastritis, GERD, or any other possible malignant or pre-malignant changes. Many times a biopsy is taken to see if you have the presence of a bacteria called heliobacter pylori. I can answer any "general" questions about that if needed. I really hate the fact I am having this major health issue, and I am in the medical field. Even worse, I am not getting the answers. Hopefully, this site will be a great support system.

 

[catarific]

I would get a colonoscopy to find out whether or not you may have Inflammatory Bowel Disease, Chrones or Colitis. These diseases also require a gluten free diet which can abate some of these symptoms. It seems lately, everyone, including me, attribute the weight loss, pain, diarrhea to gluten and thinking it is because of celiac - but it might not be - further testing looks like it might be indicated.