Finally Looking For Answers!

[amberlynn]

So after a bad 'flare up' of something last month, I called the doc and told him. I've had issues on and off for years with my BM's, but this was exceedingly bad. He sent me back to the GI (last time I went was 3 years ago - they wanted to do a colonscopy then, but couldn't tell me if it was safe while BF, and it didn't seem a big deal then). Saw a new Nurse Prac., and she was amazing, and asked all the right questions. I explained all my issues over the last few years, even back to when I was 9 and complaining of a tummy ache everyday (it was at that point I stopped complaining, no one cared). She thinks at the very least, possibly IBS, probably Celiac and/or Crohn's. She ordered a blood draw to check for a bunch of stuff, including the Celiac and Crohn's markers. I go for my upper and lower endoscopy on Wednesday, finally.

But... I've been gluten-free for a year. When I asked my GP for the test, he didn't think it neccessary. I couldn't afford to go to the GI at that point. And since I felt so much better being gluten-free, I just gave up on a diagnosis. What started me back down this track is my symptoms coming back. When the cold hit, my arthiritis came back so incredibly bad. Everyone kept telling me it was stress. Then my stomach started back up. Of course, I've been basically pain free again, but I started my anti-inflamatory soon after the pain started. Now I've been off it for a few days, of course its back again. The arthritis is weird though. It... floats?? It's random, doesn't stay in the same place for more than a few hours.

I don't know what to think. I won't get a positive diagnosis for Celiac's a year after being gluten-free right??

[txplowgirl]

No maam, your tests will more than likely come back negative because you are not making the antibodies to gluten anymore unless you have been getting alot of cross contamination.

Sounds to me either you are getting gluten cross contamination somewhere or you have developed another food intolerance.

Are you eating a lot of gluten free foods? They are high in soy and sugars. You may be reacting to dairy now. The wandering arthritis is what happens to me when I eat soy and/or nightshade vegetables. Potatoes, tomatoes, bell peppers, eggplant and okra.

You have to eat at least an equivelant of about 2 to 3 pieces of bread a day for at least 2 moths before your tests MIGHT come back positive. You noticed I stressed might. Because even then they can come back negative. Try to do a gluten challenge see what happens. A lot of us can't make it 2 weeks before we have to quit because the gluten makes us so sick we can't go any further.

A suggestion is go back to whole foods for a couple of weeks, plain meats, brown rice, fresh veggies that you know are ok for you, etc. No eating out, make everything from home. Recheck all your meds if you take them, your lotions, etc. keep a food diary, that can be a big help.

Hope you get to feeling better.

[amberlynn]

Yeah, that's what I thought. I told her this as well, but she seems to think that the test should show something - and the endoscopy will pick up something if my intestines haven't healed (which it sounds like they haven't).

I avoid soy for the most part, most meals are dairy free. I haven't noticed any worsening symptoms depending on whether I eat dairy or not. In fact, sometimes it doesn't even matter IF I eat. My tummy is awful (usually in the morning). I've had a persistent dull ache in my right side for the last month.

Hence why she thinks Crohn's is also a possibility. But, I don't have diarrhea.

I just hope they can tell me something it's been so frustrating with people not believing me.

[ravenwoodglass]

Since this started suddenly about a month ago can you think back to anything that might have changed? New lotions or other toiletries, a new gluten-free baked good or baking ingredient, do you take any scripts and if you do are they generic? Generic drugs can change binders at will. Also have you made certain the drug you are taking for the arthritis type pain is gluten free? If you take supplements have you made sure those are safe, if they contain wheat or barley grass they are not for us even if they say gluten free on the label. Have you got a significant other who eats gluten? If so do you make sure they brush their teeth before kissing on the mouth? Could you have been glutened a month ago? Some of us will have issues for quite a while after a good glutening.

As for the testing of you have been gluten free for a year your tests will be negative unless you are getting substantial amounts of CC.

If you really feel you need a doctor derived celiac diagnosis then you need to go back to eating gluten for at least 2 to 3 months for any chance of an accurate result. If you are simply looking for other possible issues and not for a celiac diagnosis then go ahead with the endo now. Just realize that the celiac testing will not be valid without a challenge.