Blood Tests Negative Biopsy Positive ?

[myquest7846]

I am very confused about if I actually have celiac or not. I was diagnosed last year after having an endoscopy and colonoscopy for stomach disorders unrelated to any kind of celiac disease..

All blood tests are negative however the biopsy done was positive. Although I am a 58 yr old woman who has never shown any gastric problems like most celiacs present, I do get migraines, have anemia, low blood calcium, and have osteoporosis.

I have been on a gluten-free diet for a year, as strict as I know how to be. My labs all improved as far as anemia & calcium levels. Still blood tests are neg for celiac, however biopsies once again positive, could this be something else??

[rosetapper23]

It is common to have false-negative blood tests; however, you can take a positive endoscopy to the bank. Yes, you DO most certainly have celiac. Your blood tests are now negative because you've been following a gluten-free diet for a year. However, if your endoscopy is still positive, it means that there is still damage that needs to heal. Congrats on improving your anemia and calcium--that's excellent! However, there may be additional damage that needs healing.

You're on the right track...and I hope you will continue to eat a strict gluten-free diet.

[tom]

Did the migraines go away while gluten-free?

Are other foods perhaps involved?

[flowerqueen]

I agree with Rosetapper above! She's said exactly what I was going to say. Please do not be tempted to eat any wheat /gluten as it will have serious consequences eventually. It can take a long time for your gut to heal - the longer you have had it undisgnosed, the more damage will have been done to the villi.

[myquest7846]

Thanks for all your responses. It gives me the boost I need to continue on this gluten-free lifestyle.

The Dr. is sending me to a different nutritionalist in hopes we can find what I am missing in avoiding gluten.

I was already overweight when I was diagnosed, and eating gluten-free "comfort foods" put another 20 on me.

I am now on the gluten-free Medifast diet which takes all the guess work out of ingredients, and I've lost 18 so far.

Thanks again for your encouragement.

[myquest7846]

Did the migraines go away while gluten-free?

Are other foods perhaps involved?

The migraines have decreased somewhat, not sure if it's the diet or the amitriptylin the Dr. put me on at night.

[kareng]

The migraines have decreased somewhat, not sure if it's the diet or the amitriptylin the Dr. put me on at night.

My migraines almost completely went away off gluten. I have had maybe 3 in 3 years and they were just the beginnings - lighter headache and wierd images/light sensitivity. I was able to get rid of them quickly with target generic brand Excederin (says gluten-free on box).

[gatita]

I am now on the gluten-free Medifast diet which takes all the guess work out of ingredients, and I've lost 18 so far.

Congrats on the weight loss! How do you like the gluten-free Medifast plan? I lost 40 lbs. on regular Medifast five years ago, and loved it. Kept it off, too, until this whole celiac-ish adventure set in last year... I actually think being on MF and then moderate-carb maintenance delayed the onset of my symptoms, because I was getting very little gluten until last year, when I went carb-crazy.

[myquest7846]

Congrats on the weight loss! How do you like the gluten-free Medifast plan? I lost 40 lbs. on regular Medifast five years ago, and loved it. Kept it off, too, until this whole celiac-ish adventure set in last year... I actually think being on MF and then moderate-carb maintenance delayed the onset of my symptoms, because I was getting very little gluten until last year, when I went carb-crazy.

I understand the whole carb crazy thing, I was eating any chocolate that I could find that was gluten-free, and gluten-free donuts, etc etc, til it got way out of hand. I guess it was part depression too knowing that I'd never be able to eat breads again, and then the stigma of having to be on a special diet especially going out with friends and family. The Medifast is not bad at all, like I said it takes all the label reading work away which is nice. Finally glad to hear someone say they've been on MF and kept weight off, all I've heard is that weight came right back after stopping. Thanks for encouragement on that!