Do I have Crohn's?

Seems like a stupid question, but here is my story. I am 37 and have suffered with abdominal/digestive issues for many years. Early on, it was more occasional and especially after eating certain foods. It slowly became more chronic and eventually it was as if I had the flu for almost 2 years straight. I have had blood tests (3 over the years) that have all come back positive for Crohn's disease, with the numbers increasing over time. I also have a diagnosis of celiac disease with positive bloodwork for that. I am gluten free now and have been for 2 years, which has helped in part. At this point, I am basically on my own trying to deal with everything. My question is this, does positive blood workup for Crohn's mean I have the disease? I have had colonoscopies in the past that did not show active disease, but did show polyps and as the doctor put it "very very bad intestinal spasms". I also have chronic gastritis in my stomach and severe GERD. I have more bad days than good days by far and even my good days aren't what I would like them to be. I just don't know where to go or what to do from here. I am doing a lot on my end to try to control symptoms, including RA symptoms. I feel very brushed off by doctors and have left appointments in tears in the past. Any advice would be so much appreciated. Please feel free to ask me any questions as well...I feel like I could get better advice from other patients more so than doctors sometimes. Please help...thank you!

For the celiac, I first had labs done. I believe it was a celiac panel, including tTg/IgA...not exactly sure on that one. I did have an endoscopy done after that positive for celiac. My doctor, who has celiac herself, is absolutely positive I have the disease. Now, the tests I had done for Crohn's did include the one by Prometheus Labs and was "pattern consistent with IBD, specifically Crohn's disease". Those showed elevated ASCA IgA and IgG along with some genetic results mutation detected. Those tests were done in 2012. In 2011, I had some tests that showed high S. Cerevisiae AB IgA and IgG (so same or similar tests??).

I have had 3 or 4 colonoscopies over the past 15 years. I do not have any of those reports and only remember what I was told at the time. Always polyps (removed). Spasms. Hemorrhoids (internal and external). I have no idea how far they were able to see.

Only imaging studies have been CT scans. I just had one last week due to ongoing and new issues, which I was told over the phone looked good other than a cyst on my left ovary.

I do suffer from iron deficiency anemia with very poor iron studies. I have since had iron infusions that have helped. I also have low vitamin D level.

At this point, I feel I have been left to fend for myself, as I do not have a GI doctor and my regular physician is not actually a doctor but a PA. She continues to tell me to eat gluten free (always do anyway) and also suggested removing many other foods from my diet. I already stay away from dairy, as I know I am lactose intolerant. I have tried removing other foods with little or no difference. My symptoms range from just about every GI issue you can have to headaches/migraines, joint pain, muscle pain and weakness, brain fog, hair loss (better with iron), Raynaud symptoms, cold/numb feet, and spine/nerve issues. I feel like I just don't know where to go from here. I'm not sure what is related to what.

I'm surprised that your PA hasn't referred you to a GI already. That should be your next step. I often describe my symptoms to people as feeling like I'm coming down with the flu continuously with all the joint pain and fatigue. It took me 25 years of suffering before I got the right diagnosis, so I know how you feel about fending for yourself. But that shouldn't be happening to patients in this day. I hope you get a referral soon so you can get the right treatment.

I'm glad to hear that you are following a GF diet.

Are you taking vitamin D to try and address your low values? How about iron?

I agree with the previous posters that you need a GI. It might be worth your while to get yourself an appointment at Mayo or Cleveland Clinic. At either place you will have a work-up over a couple of days and then I hope they will be able to give you some solid answers.