What To Do Next?

[Catjb]

Last year, January 2011, I was a well person. In Feb I had a bout of diverticulitis. A month after recovering from that, (and the innumerable antibiotics that made me throw up) abdominal pain began again - in a different spot. I spent all summer going to doctors and having tests. I was treated for pre ulcer with proton pump inhibitors, H. Pylori despite an inconclusive test, and finally a hernia. The gastro doc did an EGD and a CT scan. All was well. Finally both doctors concluded that they could find no reason for the pain and they offered pain meds. Celiac was never mentioned and only the gastro doc asked if it seemed that any food in particular was a problem.

In desperation I went on a (mostly, mistakes were made)gluten free diet. The pain went away. On October 1 I started eating gluten again in order to do the blood test for celiac. I was pretty well for most of the month but by the end my old familiar pain was back. November was worse, despite being back on a (mostly) gluten free diet. I now cannot eat corn, dairy, raw vegetables, quinois. My gut is a mess.

The blood test was negative. So I am left with no diagnosis and 2 doctors who basically have written me off. My condition, whether celiac or just a gluten intolerance, is worse - I seem to be a lot more sensitive than before.

I am thinking of trying to find a good nutritionist who may have more information. Or maybe another doctor who may be helpful. Any opinions on this?

What I need is support, because when things are not going well, I doubt myself - everything I am doing is a guess. I value this forum - for now, this is the only validation and support I have.

[Ninja]

I've had the most luck with a naturopathic M.D. Unfortunately he is out of our network so I was only able to see him once. However, I would take his recommendation for a GI doctor over my own PCP's... He looked at things very holistically and flat out told me that he believes there is an underlying reason for all pain. Pain should not be an everyday occurrence. Anyhow I would highly recommend him to anyone... maybe you can find a doctor with a more holistic side?

I can tell you that many people get negative blood tests — but if you really believe Celiac is the root of it all you could insist on the gene test and/or biopsy, though you would have to continue eating gluten for the biopsy. Do you know if the doctor ran a full celiac panel? Most people say if you had previously been gluten-free for more than 1-2 weeks, your gluten challenge should be 3 months long (eating the equivalent of 3+ slices of bread a day). Plus, even if you ate all the gluten in the world all day, everyday there is still a 20-30% error rate. Have you had your vitamin and mineral levels checked recently? That could be another clue. (Most Celiac's are deficient in a few.)

If you are a person who doesn't need a diagnosis, you could always just go gluten-free again. You need to do what makes your body feel the best because even if you don't have damage to your small intestine, gluten is still stressing your body.

I know how it feels to not be heard. Doctors want a clear cut answer and most GI cases aren't. There's a theme of doctor suchishness on this forum — it's not you making it up, it's them pretending it doesn't exist!

Hugs,

~Laura

[Catjb]

Thanks for your reply, Laura, and I will start to search in my area for another doctor. I am turning 60 and the thought of being in pain or worse for more time just to have a test that may be inconclusive again is a real deterrent. That said, I have been suffering a lot less time than some of the people whose stories I am reading on this forum. I am appalled that so many have suffered for so long, and I guess I should think about them and not whine. I fell better just having your reply and knowing I have been heard. Helps me let go of some of the frustration and anger!

[ravenwoodglass]

Welcome to the board. First off feel free to 'whine' all you need to. Yes there are some of us whose disease got very far advanced before we got a diagnosis but that doesn't make what you are going through any less distressing. Do feel free to vent or ask any questions you need to ask.

If you were back on gluten for less than 2 to 3 months then that may have caused a false negative. Also how many of the celiac panel tests did your doctor run? Some doctors only run one or two tests and it is not uncommon for us to show up positive on only one or two of the tests and negative on others. Plus at times doctors will see a low positive and call it a negative. Gene testing is not conclusive one way to the other. Doctors usually only check for 2 of the 9 or so celiac associated genes. People can have one or both of those 2 genes and never develop celiac and there are diagnosed celiacs that don't have those genes. We have a lot more to learn in that area. IMHO the most important test is how you feel on the diet and what your reaction is to adding gluten back in or accidental injestion.