Undiagnosed & Gluten Free For 2 Months

[psychlgal]

My Doc suggested I go gluten free without being tested after doing blood work and finding a positive ANA, negative for RA and no other explanation for the ANA and Vitamin deficiencies my blood work showed. She also took me off my cholesterol med (muscle pain relief in less than a week; gave me a B12 shot and sublingual B12, and recommended nutritional testing. My symptoms included bad nails - (nail bed lifting and splitting nails); thinning hair; all the symptoms of thyroid disease, which she said was due to my inadequate conversion of T3 to T4 as I make plenty of thryoid hormone; and a recurrent skin rash particularly on my face & lips. I had a parathyroid gland removed in May that was completely off the chart as well as a thyroid nodule. I have had several "incidents" in which I experienced the gut symptoms associated with celiac always after eating a lot of starch/fried foods - was sick in 2009 for many weeks until the doctor prescribed probiotics. As long as I avoided the starchy/fried foods in excess, those symptoms were kept at bay...but still I had the thinning hair/nail problems, and a host of other mild symptoms. I think the rash started about 6 - 8 months ago, and it has been the most obvious indicator lately that I accidentally ingested some gluten or whatever it is that is causing this. No serious gut symptoms lately. I feel much better off the gluten, but I'm a little confused as to why the doc wouldn't test me first...although if I did start intentionally eating it again and the symptoms were worse, I don't know if I could do it for 3 months. The face rash really bothers me. I look 10 years younger when it goes away, and my face doesn't hurt! Anyone have any insights or been through anything similar?

[cassP]

im confused too why she didnt test you for Celiac... strange.

your high ANA could mean any number of Autoimmune Diseases, so im wondering why she only tested for RA, nothing else, and assumed Gluten Intolerance.

and i think you meant to say conversion of T4 to T3. so, are you on meds for a hypothyroid???

you could very well have Celiac or Gluten Intolerance!! but i hope she is also testing you for Hypothyroid, and vitamin deficencies.... because sometimes removing gluten only is not enough to resolve all of our issues

good luck figuring it out... and ya- going back on gluten for testing would not be fun at all

[Zary]

As far as testing goes, in your case you seem to have a number of issues. For simple cases, like mine, testing isn't really that important, in my opinion. My doctor did not pursue a lot of testing, either. After having GI problems and migraines for years, everything came to a grinding to a halt-I couldn't "eat a thing" without getting sick last Christmas. Even when I stuck to clear liquids, I complained to a friend, I was still having stomach problems. I thought it was the flu and was just trying to take it easy on it with the clear liquids, but my friend, who was recently diagnosed with Celiac disease, informed me that there was probably gluten in my bouillon cubes. Sure enough. I had been so sick for several days and was starving, so I immediately went gluten-free to see if it made a difference. I was able to eat chips, pop and the ham my mom had bought for the holidays happened to be gluten free, as well. It felt great to eat after weeks of lightly grazing (on Combos and other bread based products, thinking they would be light on my upset stomach). I went to my family doctor after two weeks on this gluten free diet with detailed information on what I ate and any symptoms to get his take on the situation. He said it was probably a gluten issue. He ordered a thyroid test and some blood work, I don't believe it was the full panel, and it all came back negative for Celiac. Of course, I'd been off gluten for the two weeks prior, so that may have impacted the results, but when I returned he said the best test is to see if I feel better gluten free, and if I do with no other complaints and I had no desire to test further, then that was fine with him. He said the end result would be the same: don't eat gluten.

I was appreciative of this because I could continue feeling well (no gluten-ing up for further testing), was able to feel well almost immediately and have felt well since then, with the exception of having to have my gallbladder out because of a gallbladder inertia problem, which I find is linked to Celiac disease. I am glad he didn't make me eat more gluten just to have the all so important paper proof of testing. My years of migraines have disappeared. I used to eat Excedrin migraine, on average, every day of the week. If I didn't take it one day, I had to take it two or more times the next day. I was always in some phase of migraine, either getting one, trying to finish getting rid of one or incapacitated with one. Prescribed medications never seemed to help the migraines, only leaving me drugged. I had also developed increasing problems with anxiety over the years. Gone. My stomach always hurt, I often had any range of G.I symptoms and even wearing pants was a daily discomfort. Gone.

Don't fret over testing. If you eliminate gluten and you still have symptoms, go back to see what the problem might be, but otherwise, just enjoy the relief of symptoms.