Need help analyzing my results!

[jenniferlee415]

I went to a GI dr back in January of this year after I found that the 23andme test I got for Christmas showed I have a celiac gene. I had been having many digestive issues and at the time had diarrhea for over a month straight. 

She did the celiac panel blood test and an endoscopy with a biopsy. I had zero knowledge of celiac and the diagnosing of it at the time. So when her nurse called me the next day to tell me that the bloodwork showed "it looks like you have celiac disease" but then she said the biopsy did not show anything except inflammation. I did have an H Pylori infection as well.

Now that I've been gluten free for 9 months and have joined many groups / forums to talk with others who have celiac disease, I realized my bloodwork was off from what every else was posting. My IgA serum was 199 so well within the normal range, which I've read means the test results are accurate. The ONLY part of the panel that had a positive result was the TTG IgG. I had no TTG IgA or any other positive.

In my research the past few days, I've read several medical studies that say specifically that IgG can be present in other autoimmune diseases and is present throughout the body, not necessarily specific to celiac only. IgA of course is.

In June, I had emergency gallbladder surgery and they found a very diseased gallbladder that would have definitely caused me many issues. I was put on high powered IV antibiotics during my 4 day stay in the hospital and I believe this finally killed off the H Pylori. Since having it removed, I have felt significantly better and most of my digestive issues have subsided. 

I definitely don't want to throw away a celiac diagnosis if I do have it because I know the long-term effects it can cause if gluten isn't strictly taken out. However, if I don't have it and it could be another issue altogether, that's something I need to know. My mom has been diagnosed with Crohn's and has been tested and biopsied twice for celiac with a negative result. 

I have decided to try a 2nd consult with a new GI doctor that specializes in celiac disease. Of course that means I will need to begin eating gluten again so they can retest me. I've been terrified of it but ate some with dinner and breakfast with absolutely no side effects. So now I'm really stumped..

[ravenwoodglass]

It can take some time for the antibodies to build up and cause a reaction. Some folks react within a few hours and for others it can take longer. When I did my challenge it was 3 days before I reacted but when I did it was a severe reaction. I think your plan to retest is a good one just make sure you challenge for long enough. 12 weeks is advised for the blood work and 2 to 3 weeks for an endoscopy. I hope you get some clear answers after your challenge and enjoy any gluteny foods you have been missing. If your reaction to the challenge is severe do be sure to call your doctor as they may be able to give you some meds to help you through it and if severe enough the doctor may have you stop the challenge.

[pikakegirl]

I see your dilemma. I have silent Celiac or so it is called. Not much GI symptoms, none when I accidentally ingested it once after years of being gluten-free. But before diagnosis I had biliary dyskinesia meaning my gallbladder was not emptying and had to be removed. My symptoms were Thyroid being attacked, fatigue, muscle pain, anxiety, kidney stones, weight gain, high CRP and some constipation. A Rheumatologist and 4 Gastroenterologists missed my diagnosis for decades even with biopsies. Many of those symptoms were from malnutrition. By the time I had second biopsies and blood work only 2 ft of my small GI had villi. I now have nerve damage from low folate all those years. That said seems you are right on more opinions but I would redo bloodwork every 6 months if you are eating gluten to see if there is autoimmune response. Maybe you are intolerant. Researching on your own is a must. Just found out my spouse has the gene to but no symptoms. Still I want him screened because I see diagnosis can be missed.

[RMJ]

I would ask for a copy of the official biopsy results.  Sometimes what is said over the phone isn’t the whole picture.