What the F***!?

[pdm1981]

So I was diagnosed about 6 years ago and have been putting up with the same symptoms ever since. I was very surprised when the GI doctor was going over a battery of tests I had done when she came to the conclusion that I never had celiac disease. I had to ask her to repeat that several times. All the tests were coming back normal and the so called "gold standard of testing for celiac disease", a duodenum biopsy, came back negative. I asked her if it was because I was on a gluten-free diet and she told me that regardless of whether I am on a gluten-free diet or not that there as changes to the tissue that would be present in a patient with celiac disease. She even said that the test 6 years ago said that the tissue looks normal so they chose not to do a biopsy. The blood panel was high 6 years ago though I reminded her. She told me that could've been do to Bacteria Overgrowth. The blood panel returned to normal because I've been following a strict gluten-free diet but a lot of symptoms have stuck around for 6 years. This could've been because the bacteria  problem was never corrected. If this is true, and god I pray it is, it only requires a few doses of antibiotics and my life should return to normal. I wanted to cry and at the was so angry I was seeing spots. I've felt like s$#& for years and stuck to this diet which causes nothing but anxiety and eats up time and money for the last 6 years. If this turns out to be true, stay away from the doctors at the Ohio Liver and GI Institute in Cincinnati, Ohio. I've gone back to them several times begging for more tests to get told no and when I went somewhere else, they knew the doctor and trust his conclusion. How am I not suppose to be pissed off. $6.00 for a loaf of frozen bread when I could've only spent around a dollar. The doctor's recommendation, "begin to add small amounts of gluten to your diet."

[Ennis-TX]

....I would get the copies of the biopsy from those years past.....of course a strict gluten free diet for 6 years would leave a healed gut. FFS mine was fixed after a bit more then 3, with no damage on the biopsy (the the area is the size of a tennis court, could have missed it).  Numbers down mean something, what test were done? IF the full panel was done and all were high nothing other then gluten reactions with cealic will do that.

I still have issues from damage done by celiac YEARS later, hell we discovered just last winter that part of my gluten ataxia damaged my nervous system/spine around the t7 that led to my whole stomach and pancreas issues that came about and made it so I can not eat meat and randomly get gastric dumping issues.

Intolerance and food sensitivities are life issues with a autoimmune disease and damaged gut...and each time I get accidentally glutened its like someone just took all my life dice and went yahtzzee with them giving me new issues. Fracking stomach is like a damn kid that does not talk but must mumbles and throws a darned fit. I have to guess whats wrong and try to appease it. Your not alone with a fracked up body even on a gluten free diet....just our F'ed up immune systems.

OH and just to complain, "$6.00 for a loaf of frozen bread" ....lucky, carbs make me distend and s$#& blood (Ulcerative Colits that is a fact)...nut based breads cost me $8 a loaf to MAKE, if I bought from another bakery it would cost $10.99-$16 a loaf

[cyclinglady]

What????  I think you need to ditch this current GI and I have no idea how you can deal with the previous GI who only did a visual during the endoscopy and did not take biopsies.  These doctors are/we’re NOT following the recommendations issued by the American GI Association.  

I have healed from celiac disease.  My new GI would never have guessed that I have celiac disease except I gave him my initial testing results from 5 years ago.  Visually, and biopsies obtained revealed a health small intestine and no permanent damage (unlike Crohn’s which can cause permanent damage).  Good news for me because that meant I healed!  I have never read that permanent damage can occur in celiac disease In fact, the GI tract is fully capable of healing or returning to normal if you have celiac disease.  Now, a big chunk of people do not heal.  There is lots of speculation, but very few studies have been conducted.  But most of these people appear to be getting hidden amounts of gluten into their diet.  

Open Original Shared Link

A SIBO diagnosis should have been caught on a biopsy or on breath tests.    Are you sure they took an adequate amount of biopsies?  Your original celiac panel?  How many positives did you get?  Which ones?  

Something is off.  I hope you figure it out.  

[pdm1981]

All biopsies are normal and negative for celiac disease. No damage was seen. This current GI doctor ran every test except for the breath test which is scheduled for June 15th. As far as the original doctor, he is only going off the 1st blood test I got, and this was the only positive test. No biopsy was ever done with the 1st doctor who diagnosed me. I saw the write up that the doctor gave  for the 1st scope 6 yrs ago and everything apparently looked normal and this was done when all my symptoms were there and bad. They went up and down with cameras, sampled #1, #2, blood, CT scans, ultra sounds, gene test, and at least 4 biopsies and nothing appears to have shown any signs of past or present celiac disease. It was a pretty extensive work up this new GI did and the breath test is coming down the pipe. I was also told that certain bacteria can elevate numbers in your blood. The original GI doctor only went off of one blood test and that's it. It may have been a false positive. I've had every test (except the breath test which is coming) that I can think of and not one sign of celiac disease can be found except the gene test came back positive which only means there is a potential to develop celiac disease. They did say I may have a sensitivity but they're not sure. The 1st doctor never wanted to even test anything despite the symptoms never leaving. I'm going to see this through to the end. Maybe I'll get my life back or maybe I'll fail the gluten challenge they prescribed. This new doctor is at least giving it a shot and I'm getting a full work up. They even said if I want another opinion all my results, past and present, will get sent to the Mayo Clinic to get reviewed. What else is there? If there are other tests out there, let me know and I'll ask for them to be ran.