Totally Confused

[Bethinjapan]

I had my blood tests and endo last Friday, just over a week ago. Up until that time, I was eating gobs of gluten (which pretty much rendered me dysfunctional) to give myself the best chance of accurate tests possible, and went gluten free that day. I also went gluten free for four days a couple months ago and felt better by day three and four. This time, I felt better for a couple days and since then, while my joint pain seems better and I'm not as fatigued, my stomach has gone completely haywire. Worse than ever diarrhea. I have tried to be super vigilant in making sure I was getting NO gluten, went and bought a new pan, spatula, cutting board, etc. I've been sticking to mostly meat seasoned with salt and pepper, rice, veggies, and fruit. The two times I did have an actual gluten free substitute (gluten free spaghetti once and Bob's Red Mill gluten free pancakes once) was the absolute worst reaction I've ever had! I was literally running to the bathroom within about thirty minutes of the pancakes (the syrup was gluten free too) and I've never done that. This is causing my head to go spinning in all different directions!! I know it's too early to make any rash decisions, but I just can't seem to wrap my head around what's going on or why I'm getting worse! I was sure this was my problem!! We have church camp next week, and that throws a whole 'nother kink in my stresser, as I have no idea how to travel with this lifestyle (any advice here would also be appreciated!), or, now, if it's even worth the trouble! I have to teach the kids sessions and can't be running to the bathroom every five minutes! I won't hear the results from my tests until the end of August, but from all I've read on here and from a few things the doc said, I'm fully expecting them to come back negative. While they did spot some duodenal damage on my pill cam several weeks ago, he said everything looked fine while doing my endoscopy. So, I'm not even sure if it's a diet related thing any more. And if so, should I just patiently stay the course as I am, or should I do an elimination diet to search out the cause of the continued, daily, worse than ever diarrhea. Could my body possibly be trying to "detox" the gluten now that I'm gluten free? Or is it something else entirely?

Thanks for your opinions!!

Beth

[darlindeb25]

Could my body possibly be trying to "detox" the gluten now that I'm gluten free?

Absolutely! Also, when you first go gluten free, I think you should stay away from anything processed, such as pancakes. Bob's Red Mill flours have made many ill, there is a cross contamination problem often times there. A system trying to heal needs easy foods, whole foods. Try baked potatoes, rice, chicken breast, cod, veggies, and fruits.

As for camp, you should call and find out if there is a chance they can accomodate you...you may just get lucky and find out they can. If not, you may have to try and figure out how you will take care of yourself. Maybe you could prepare meals and freeze them to take along, then just pop them into a microwave oven...I'm sure they will have a freezer there.

Good luck!

[Bethinjapan]

Thanks for your reply! It helps to know I'm not the only one who's had problems with the Bob's Red Mill. I totally thought I would be okay with that!

[Gfresh404]

Thanks for your reply! It helps to know I'm not the only one who's had problems with the Bob's Red Mill. I totally thought I would be okay with that!

I acknowledge you having issues with Bob's pancake mix, but I do not think it is a cross contamination issue. This is taken directly from their site: All of our products marked with our gluten free symbol are produced in a dedicated facility and batch tested for gluten content. For a complete list of our gluten free products, click here. If an item does not appear on this list, it is not produced in our gluten free facility.

So I would just stay away from all the ingredients in the pancake mix. I have been gluten free for 8 months and still feel so much better when I avoid all grains. I seem to do the best with white rice.

I would also recommend on loading up with foods high in beta-carotene (or Vitamin A). Vitamin A is essential to having a healthy mucosal lining throughout your GI tract. My gut also tends to feel better when I eat foods high in Vitamin C.

[Chuck8268]

I had my blood tests and endo last Friday, just over a week ago. Up until that time, I was eating gobs of gluten (which pretty much rendered me dysfunctional) to give myself the best chance of accurate tests possible, and went gluten free that day. I also went gluten free for four days a couple months ago and felt better by day three and four. This time, I felt better for a couple days and since then, while my joint pain seems better and I'm not as fatigued, my stomach has gone completely haywire. Worse than ever diarrhea. I have tried to be super vigilant in making sure I was getting NO gluten, went and bought a new pan, spatula, cutting board, etc. I've been sticking to mostly meat seasoned with salt and pepper, rice, veggies, and fruit. The two times I did have an actual gluten free substitute (gluten free spaghetti once and Bob's Red Mill gluten free pancakes once) was the absolute worst reaction I've ever had! I was literally running to the bathroom within about thirty minutes of the pancakes (the syrup was gluten free too) and I've never done that. This is causing my head to go spinning in all different directions!! I know it's too early to make any rash decisions, but I just can't seem to wrap my head around what's going on or why I'm getting worse! I was sure this was my problem!! We have church camp next week, and that throws a whole 'nother kink in my stresser, as I have no idea how to travel with this lifestyle (any advice here would also be appreciated!), or, now, if it's even worth the trouble! I have to teach the kids sessions and can't be running to the bathroom every five minutes! I won't hear the results from my tests until the end of August, but from all I've read on here and from a few things the doc said, I'm fully expecting them to come back negative. While they did spot some duodenal damage on my pill cam several weeks ago, he said everything looked fine while doing my endoscopy. So, I'm not even sure if it's a diet related thing any more. And if so, should I just patiently stay the course as I am, or should I do an elimination diet to search out the cause of the continued, daily, worse than ever diarrhea. Could my body possibly be trying to "detox" the gluten now that I'm gluten free? Or is it something else entirely?

Thanks for your opinions!!

Beth

Beth

I started very simple.Fresh veggies,fruit, fish/chicken/meat potatoes/rice. Then I slowly built upon that, and found the suspect foods.Also some spices/prescription pills can be suspect.Possibly cosmetics.When I started my gluten-free diet,my symptoms almost immediadtly went away

Chuck gluten-free July 4th 2003

[LDJofDenver]

"(gluten free spaghetti once and Bob's Red Mill gluten free pancakes once)"

Could also have been what you put on the pancakes or on the spaghetti.

But if you do have celiac disease and were consuming that much gluten in preparation for your tests, you no doubt did quite a bit of intestinal damage during that period. It could take months to begin recovering from that alone (the heavy ingestion of gluten).

[hannahp57]

it was three months for me before i had a "normal" bm. this is going to take time. i started out with plain unseasoned chicken as the only source of protein. i ate fresh fruits and veggies. i even left out dairy until i think 6 mos. i would recommend these ideas to you also. your small intestine has had gluten in there causing you villi to flatten and the longer they have been damaged, the longer it takes for healing. it is possible you have other sensitivities as well. my dr told me no gluten-free oats and no soy until i got healthier. at 3 months i had gained 5 lbs back (i had previously lost over 30lbs before diagnosis). i reintroduced soy and tolerated it. my first time with oats was a no go. but at two and a half years i tried again and had no issues. they are a good source of fiber in my diet now.

good luck and keep posting. hopefully if gluten isnt your problem you will find what is.