What Would You Do?

[ryeanddiet]

Hello,

I've been suspected celiac since I was a baby and went gluten free and healed from vomitting and exczema. I had horrible pain and nausea episodes for 2 years when I was a teenager - it was suspected celiac but one GI ruled it out due to my height.

A year ago, I had a stressful period and developed a migraine that lasted for 9 months. I had steatorrhea, cankers,psorasis, low iron and b12, lost weight, nausea, cramping and pain episodes in my right lower rib. I tried several doctors and naturopaths until I went for colonics and felt relief. The naturopath doing the colonics commented I wasn't digesting breads or dairy very well so I dropped both. In combo with the colonics, I felt great. I went to the Dr and asked about celiac again and we did the IgA test (and lactose intolerance) and both were positive (elevated levels) despite being virtually gluten-free (I didn't know everything not to eat at that point). The Dr told me if I was feeling better gluten free in combo with the blood test then I should just continue going gluten free. He sched'd an appt with the GI(this was in March) but due to wait, I only had the appt today. I have been completely gluten free since March. For a few months I still had cramping, constipation, cancers, acid reflux and was passing some bloody stools and some 'black flecks' but that has pretty much ended. I've been feeling tired and switched Dr's and my new Dr has found my b12 is back to normal (I was getting weekly shots) but that my iron is even lower and my thyroid is irregular.

Other than being incredibly fatigued (which I assume is thyroid and low iron-related), I feel great. For the first time in my life I'm going to the washroom almost once a day!! (it was once every 2 weeks for awhile, at best once a week and often it was diarrhea when I could go) and my cramping is 80% gone as is my bloating.

I went to the GI specialist today and gave him the run-down. I told him I'm 99% sure it's celiac due to the changes I've experienced but he insists I need the IgG (the other celiac blood tests??)test at a minimum and more than likely the endoscopy as well. This means I have to ingest gluten again. It saddens me as I had a dinner a few weeks ago with a minute trace of flour and was sick for 2 days after. I asked how long I'd have to ingest for it to show up. He looked it up but couldn't find anything. He figured 2 weeks but I'm leary from what I've read on the internet and don't want to make myself sick for a period of time only to get neg results b/c it hasn't been enough time!

My 'gut' says 'don't do it! you know how you feel' but the Dr today said I need the medical diagnosis official so they know to keep their eye on other celiac-related issues.

any thoughts?? any ideas on how long I'd have to ingest to be sure the tests would be true??

thanks gang!

[celiac3270]

Doctors' opinions differ....2-3 months might be what the average doctor would say.....try 2 meals a day if you're going to do it.

Hmmm.....I think how long you've been on the diet is a big part of it....gluten-free since March.....that's four months, then.......hmmm........I've been gluten-free five months and going back now would not be something I'd want to do. I, personally, don't think I'd do it. From what I've heard (with similar instances), Enterolabs might be a good idea.......never tried Enterolabs but almost everyone praises their testing. Talk to your doctor about it.................you don't need to eat gluten for it to work.

-celiac3270