New & In Need Of Help!

[figment]

So this is going to be long and gross, but from other things I have read - you guys are used to it.

I started gluten free about 5 weeks ago after about a year maybe up to 5 (that's a really long story) of being sick (nausea, diarrhea, not being hunger, joint pains, headaches, tummy aches tired all of the time.....i will stop there) It should also be noted that I do not have a gallbladder (some symptoms could be that)

I feel 90% better since going gluten free - YAY ME!!!! However, I still have a bad day or 2 each week. Is this normal b\c my body is healing, or am I missing something?? I have started pro-biotics, have NOT started fiber yet but I am going to see my Dr. again tomorrow and should be starting those tomorrow. My poo is not all diarrhea, but a mix diarrhea and soft but formed poo (I told you it was going to be gross) I have NOT been eating gluten and yes I am sure ( I work at a club and the chef himself prepares my meals and the kitchen staff is very aware of my gluten allergy - and yes, I am very lucky to have a job like this and eat free for lunch every day) I cook my own dinners and have not been eating out. I am a researcher, and I have that chef at work, so I am very well aware of things that have gluten that you wouldn't think did.

So my question is what on the world am I do wrong to still have a day or so of tummy trouble???? Oh, and even on the tummy trouble days, I feel fine, just have to RUN to the restroom (didn't feel fine before) I am going on vacation (to Disney) in a week, I don't want to have these issues while gone.

I know I will have a tone more questions, but I feel like I have rambled enough for the moment, plus there is so much running through my head, I have to sort it all out.

[dani nero]

Hi figment and welcome to the wonderful world of totally unpredictable reactions! When I first went off gluten I felt ok but then started feeling worse, and worse and worse. I kept thinking that I for sure was getting glutened and I blamed it on so many things.. including nail polish. Now that I think back I think that it all belonged to withdrawal symptoms, which do take a lot of time.. I felt poorly for over two months, and am still getting bloated + having a wide variety of pooping scenarios depending on what foods I've been adding to my diet. You might also be developing other food sensitivities while your gut is healing. I'm sadly not an experienced member but I'm positive you'll be getting some amazing advice here :-)

By the the way you're completely right about not being able to gross the people around here so easily haha :-)

[JNBunnie1]

Figment, this is totally normal. I'm five years in and still finding things out about how my body works. Having one or two days a week with potty problems and otherwise feeling great is AMAZING. You are doing remarkably well. Most people take a lot longer to get to where you are. There is a small chance you are either still being contaminated by gluten or are intolerant of another food. The most likely is dairy. A large percentage of Celiacs do not tolerate dairy for at least a few months after going gluten free, and many never get dairy back.

Also, it never hurts to have emergency Imodium in your purse for days when you know you'll be away from potties for a while. I know at work it's easy because you know where they are, so you can just let the sypmtoms run their course, when away from home it can be easier to just drop an Imodium in the morning to prevent any issues.

[kwylee]

However, I still have a bad day or 2 each week. Is this normal b\c my body is healing, or am I missing something??

Hi and welcome!!!

Sounds like you are well on your way, given the help and moral support you are receiving from your employer and co-workers. That will come in handy. I've read hundreds and hundreds of posts here, and the two chief reasons someone in your situation does not feel well at this point is either cross-contamination (don't rule it out just yet), OR, the general healing process, which includes your body adjusting in every way from withdrawal to uncovering additional food intolerances. The fact that you're better is an indication that it could easily be either, but you're on the right track.

First on the CC issue, if you've been reading posts here you know that cross contamination can be tricky and pervasive and the worse thing you can do is dismiss the possibility too quickly. Shampoos, lotions, ANYTHING that goes on your body has the propensity to be in your body, via your mouth and intestinal tract, by inadvertent contact with your mouth. In addition, toasters, cooking utensils (make sure the ones at work have been used for gluten free only), double dipping in condiments, etc. Anyplace food is prepared (home or work) is a hotbed for CC. Others will weigh in on this and provide additional tips I'm sure.

On the healing issue, I didn't feel fabulous until I eliminated dairy and soy as well. Seems that many who cannot tolerate gluten realize they have a problem with those foods. Many times dairy and soy can be reintroduced at a later time with no problem. And just like gluten, I had a problem even with trace amounts of those two. But if that's not the case (simple trial elimination diet, keep notes and see what happens), then there are other possible culprits that others here could brainstorm if the need arose.

Have fun at Disney, I know you'll be careful! And let everyone know how your doing, TMI included! No shockers with this bunch!

[figment]

I can't wait to talk to the Dr. tomorrow, hoping that she has some incite. Going from feeling sick 6-7 days a week to 1-2 is great, but I also just started a new job, and don't want to be running back and forth to the restroom all the time. I am hoping there is some great "fix" on the issue - even though I know there will not be. Today was a hard day - 2 times to the bathroom during work and now my belly is still making noise. But I feel fine. Except that it is making me angry. I am trying to go through the forum and read as much as I can. Hoping I will get some ideas on what to talk to the Dr. about. My Dr. is amazing (reg. Dr. not gastro) I do NOT want to see a gastro even though I know I should, but when my gallbladder went back about 6 years ago I was SICK for 6 months and test after test after test would come back fine and the gastro even told my husband I was "making it up" and it was all in my head. Then the surgeon (who my reg. Dr sent me too) said WRONG, it's your gallbladder, took it out and I had chronic inflammation and that is why it wasn't showing up on tests. So I don't really trust specialist. I have a list of issues from before going gluten free and updated it today with recent issues and things that have changed - I know it is getting better, I just wanted to BE better already. I also think it's making me more upset b\c I leave for Disney next Friday and I don't want to feel bad at Disney.

[lucky28]

Hi figment,

I was diagnosed with IBS at 14 or so and Celiacs at 46. My tummy was a real mess. I was not digesting alot of different foods-gross! Lettuce ok that might be kinda normal not to digest, but french fries and cooked veggies came out like they went in! I have been gluten-free since last august and I too have good and bad days every week, it's like 2 steps forward and one back. For a while I thought I was completely gluten-free but found out that a generic spice I was cooking with was cc. Once I cut that out I am much better but I still go thru the whole gambit of poos!lol I understand it can take quite a while till your intestine are completely healed so I am learning to take in stride when my tummy acts up. (imodium helps). I pay more attention to the big picture now-my bloodwork. Vitamins, platelets, hemoglobin are higher (so is my weight! ) and my liver, cholesterol #'s are down so I think I am doing something right.

Go thru your diet again, check for cc or items you would not think gluten would be in (great value brand black pepper !), vitamins, meds, etc just to make sure. If everything is fine then maybe it's another food intolerance or maybe it is just your body's healing process.

When you get time, read through some more posts on here, there's alot of good advice from some of the more experienced members.

Hope you're feeling better soon.

Have fun in Disney!

[figment]

Hi and welcome!!!

Sounds like you are well on your way, given the help and moral support you are receiving from your employer and co-workers. That will come in handy. I've read hundreds and hundreds of posts here, and the two chief reasons someone in your situation does not feel well at this point is either cross-contamination (don't rule it out just yet), OR, the general healing process, which includes your body adjusting in every way from withdrawal to uncovering additional food intolerances. The fact that you're better is an indication that it could easily be either, but you're on the right track.

First on the CC issue, if you've been reading posts here you know that cross contamination can be tricky and pervasive and the worse thing you can do is dismiss the possibility too quickly. Shampoos, lotions, ANYTHING that goes on your body has the propensity to be in your body, via your mouth and intestinal tract, by inadvertent contact with your mouth. In addition, toasters, cooking utensils (make sure the ones at work have been used for gluten free only), double dipping in condiments, etc. Anyplace food is prepared (home or work) is a hotbed for CC. Others will weigh in on this and provide additional tips I'm sure.

On the healing issue, I didn't feel fabulous until I eliminated dairy and soy as well. Seems that many who cannot tolerate gluten realize they have a problem with those foods. Many times dairy and soy can be reintroduced at a later time with no problem. And just like gluten, I had a problem even with trace amounts of those two. But if that's not the case (simple trial elimination diet, keep notes and see what happens), then there are other possible culprits that others here could brainstorm if the need arose.

Have fun at Disney, I know you'll be careful! And let everyone know how your doing, TMI included! No shockers with this bunch!

Thanks for the encouragement, and yes I am also lactose intolorant and have been since my oldest child was born 17 years ago. I don't know about the soy. My Dr. is awesome, and I can't wait to talk to her and hear what she has to say. My family is known at the office as the "mystery diagnoses" family b\c each of us has has something "rare" (ie - son has chiari, daughter had intaseseption as infant, husband has PSC, I had a rare infection in my brain years ago that only happens to people with MS - yet, I don't have MS) so the good thing is my Dr. knows us well, and she is very patient and kind about finding things out.

I also have been wondering if it is possible that they gallbladder thing was really gluten all along or did this happen after. I have felt bad since then (about 6 years) but b\c of knowing that most of my issues could also be chalked up to not having a gallbladder I never thought about it again until the past few months that it was something else.

I am VERY greatful that I am starting to feel good, I guess I just want to feel GREAT all the time..

As for the CC - I have been very careful, at work and at home, but I will not rule it out. The reason I don't think so is that I did have gluten (by accident) over a week ago and it's a very fast reaction - running the the restroom withen 30 minutes of eating and it was always like that. This has been upon waking today.

Again, hopefully the Dr. has some incite.

[dani nero]

I am VERY greatful that I am starting to feel good, I guess I just want to feel GREAT all the time..

It's great to hear others reaching that feeling and wanting to stick to it rather than being overwhelmed about leaving gluten behind. It's really refreshing and I hope you'll always feel great :-)

Just a thought and I hope it's not a stupid thought, did you go through decontaminating your whole kitchen? And did you try removing the pro-biotics that you just added to see if they were causing the unwelcomed bowel movements?

What do you eat and not eat by the way?

[figment]

It's great to hear others reaching that feeling and wanting to stick to it rather than being overwhelmed about leaving gluten behind. It's really refreshing and I hope you'll always feel great :-)

Just a thought and I hope it's not a stupid thought, did you go through decontaminating your whole kitchen? And did you try removing the pro-biotics that you just added to see if they were causing the unwelcomed bowel movements?

What do you eat and not eat by the way?

I have (I think) decontaminated the kitchen and the kitchen at work has a "safe" area (we have club members that are Celiacs)but I am rethinking it also. Last night I had chicken w\ a little salt, and potatoes with a little salt. But I have been using the same dish that I always use, however it was well cleaned. Should I be using bleach or something special???

I did stop the probiotics yesterday when my belly started to make noise, but I took it a little while ago b\c it does seem to help my belly to feel better ???? I have checked and the maker claims gluten free.

After reading more and more, I am thinking that my little set backs may just be healing and getting used to new foods and not having the old foods (I ate a LOT a bread) I am thinking that my body is just adjusting and it is just going to take some time.

It's just frustrating to feel great for a couple of days then feel bad for a day. Although I don't feel like crap today all over like I did before going gluten-free. I need to remember just how bad I use to feel.

And I am VERY greatful that I finally figured out the gluten issue. I don't understand how anyone can miss feeling like crap all the time. I have found replacements for almost EVERYTHING I loved before so it has been easy. And work and my friends and family have been amazing (I have read more then once that people do not get this reaction) last weekend I went to a friends for a birthday party and she had even gone to Whole Foods and gotten me gluten free cupcakes - WOW!!! I have awesome friends right. My parent's took my kids to get donuts and brought me back a gluten free cookie (packages) my husband tried....he went to a bakery they said they "thought" a cookie was gluten-free, but that was what made me sick last week - so I know it wasn't gluten-free, but he tried.

I have tons of specialty stores in my area and a couple of gluten-free bakeries also. So that has made it easy to find great stuff to replace foods. I have also ran into gluten-free people in the grocery store and they have all been very helpful in pointing me in the right direction if I couldn't find something.

I think my big issue today is that I am freaking out about Disney, not that i can't eat, b\c they have gluten-free options, but that I will feel bad while we are there. i don't want to miss anything, nor do I want my husband and child to worry about me. We were there last October and I was super sick for the first 4 days (taking zofran every 8 hours) I now know it was the gluten and I need to remember that.

[kwylee]

Not sure there's anything to be gained by stressing over the notion of unnecessary gallbladder removal issue. I do know that I've read many who say that gluten affected the GB to the point of removal, so you'll never know what came first, chicken or egg. Right now, being gluten AND stress free will help your system recover. Once things settle, you'll get a feel for any adjustments you many need. You're never at a loss for ideas on this site.

And what a joy to have a doctor who is willing to listen and work with you. It's scary to feel you're on your own in this, which you absolutely are not here, but that level of comfort will be important to that goal of minimal stress.

I also wanted to mention removing processed foods as much as possible, including those gluten free ones, at least until your symptoms are totally under control. That was the best advice I took when I first started. Much easier to digest fresh meats, veggies, and fruits. It will also let you see what changes your system is undergoing if you add those things back gradually, one at a time. I know it's not always easy to do that when you travel, but just being mindful of that may give you clues as to what could continue to give you sporadic symptoms.

[figment]

Just back from the Dr. and I am very happy with the appointment. I knew she would have some great incite. First, I was still having some tummy issues this morning, I kept drinking tons of powerade and THAT was my mistake plus a couple of other things. I described how bad the poo was today (green, I mean GREEN and very painful(burning)after) the color was the powerade and the pain after was acid. She said she thinks what is going on right now is 3 things.....1) glulten, it will take some time to heal and feel better (I knew this part) 2) no gallbladder, causing processing issue and 3) stress belly ( not IBS) she said " I know you, and you take stress in different ways" Boy does she know me. So she has a couple of new ideas to help with all of these things. She was not ready to make me go through more testing but said if not feeling better in another month or 2 she wanted some more testing done (biopsy's, etc) so I will start a Bile acid med's (to help with not having gallbladder) start taking fiber, have pepto on hand for when needed, and imodium on hand for when needed. She also said to keep the zofran on hand.

I just wish that everyone had an awesome Dr. like I do. I didn't realize just how good I have it, I mean I knew she was great, but hearing other's horrible stories makes me very thankful.

[JustNana]

Figment,

I have a big grin on my face for you. I was waiting for your post after the Dr. Yes, she dooes sound wonderful. I am sending you best wishes for a terrific trip to Disneyland. Last May, before I was diagnosed, our son, daughter and three little grandkids went to Disney for 5 days. We splurged and stayed on site at the California Grand. The first day of walking hurt my gluten inflamed hips so much I had to be in a wheelchair for the rest of our trip. My hips and knees are still bad but I have almost zero bowel issues after goi g gluten free 2 months ago. (I don't think Probiotics will hurt, can only help.)

Have a great trip and tell us all about it when you get home!

[kwylee]

I just wish that everyone had an awesome Dr. like I do. I didn't realize just how good I have it, I mean I knew she was great, but hearing other's horrible stories makes me very thankful.

You are right about how lucky you are!!! All that, and Disney trip too! Have a good time, and let everyone know how it was when you return.

[figment]

Figment,

I have a big grin on my face for you. I was waiting for your post after the Dr. Yes, she dooes sound wonderful. I am sending you best wishes for a terrific trip to Disneyland. Last May, before I was diagnosed, our son, daughter and three little grandkids went to Disney for 5 days. We splurged and stayed on site at the California Grand. The first day of walking hurt my gluten inflamed hips so much I had to be in a wheelchair for the rest of our trip. My hips and knees are still bad but I have almost zero bowel issues after goi g gluten free 2 months ago. (I don't think Probiotics will hurt, can only help.)

Have a great trip and tell us all about it when you get home!

Thank you, we will have a wonderful time, however we will be going to Disney World, not land. I am on the east coast. And we will be gone for 12 days, 10 in Disney. We are kinda Disney freaks (hince Figment being my login name) I am also in a Disney forum board and there are a few people that have been very helpful about eating at Disney and being gluten free. Also, my travel agent has spoken to the chef at our resort and they deal with gluten-free daily.

Oh and I forgot to say that she said to stay on the probiotic. She also said it takes about 6 weeks for it to take full effect. So with time and paying attention I am on the right track. I am very hopeful about feeling better then I have for about 5-6 years. So looking forward to having my life back. I even was able to get to Target today to get my new meds (even though my tummy was still a little upset - normally that would stop me) Just talking to her made me feel better.

Now to get excited about our trip. And yes I will write when I get back. I will give updates about the gluten-free food too.