Biopsy Normal

[NateJ]

well, my biopsies from my colonoscopy and endoscopy came back 'normal'

The nurse said they removed 1 polyp that was benign. But other than that she didn't

see anything on there abnormal.

so I guess i don't have Celiac or anything else. just a make believe sore stomach and a fairyland

diareha.

I guess I just have to go through the rest of my life suffering now.

[eatmeat4good]

You could still be gluten intolerant. It doesn't show up on tests, but it still causes those symptoms. If you are gluten free...stay that way for a good while and see if your symptoms improve.

Bunch of people test negative but do way better gluten free.

Nothing to lose Nate....hang in there and stick with it.

[ravenwoodglass]

You should get copies of the reports even though she said they were 'normal'.

Now is when you try the diet strictly for at least a couple of months as false negatives are pretty common. Your damage could be patchy and in an area that was missed when they did the scope. There could also be changes that some doctors don't recognize as celiac related present.

[lynnelise]

I agree with the above advice. Go on the diet 100% and see how you feel. IMO false negatives are so common that this is the only true test! If after a month or so you see no improvement then try an elimination diet. Something is causing your symptoms and frankly doctors are of little use. It's sometimes better to take things into your own hands! Good luck! Keep us posted on how you are feeling on the diet!

[NateJ]

Well so far I've been on the diet since Mar 6. and have seen little if any improvement.

I have been super strict about it too. I've only eaten out once and warned the waitress, she was very

cordial about it too.

I'm so frustrated and annoyed. The Dr. put me back on Questran as its the only thing that keeps m 'D' in check enough

for me to work. The Nuerontin has little if any effect that i can tell of.

I just walk around all day feeling like someone punched me in the gut over and over.

I'm going to stick to gluten free for now. at least until i see him on the 8th and probably beyond. I was

going to see a Nutrionist but I cant' really afford it. My next step would be an elimination diet.

Its hard to stay focused and not get depressed when you feel like utter crud all the time.

If it wasn't for my family i would probably give up.

thanks for the help and support. this place is a life saver.

[Jestgar]

My next step would be an elimination diet.

Do try eliminating the big offenders: soy, milk, eggs, maybe corn. Also start writing down everything you eat to see if you can relate symptoms to food.

[ravenwoodglass]

Well so far I've been on the diet since Mar 6. and have seen little if any improvement.

I have been super strict about it too. I've only eaten out once and warned the waitress, she was very

cordial about it too.

I'm so frustrated and annoyed. The Dr. put me back on Questran as its the only thing that keeps m 'D' in check enough

for me to work. The Nuerontin has little if any effect that i can tell of.

I just walk around all day feeling like someone punched me in the gut over and over.

I'm going to stick to gluten free for now. at least until i see him on the 8th and probably beyond. I was

going to see a Nutrionist but I cant' really afford it. My next step would be an elimination diet.

Its hard to stay focused and not get depressed when you feel like utter crud all the time.

If it wasn't for my family i would probably give up.

thanks for the help and support. this place is a life saver.

Are you eating mostly whole unprocessed foods? Are you living with other gluten eaters and if you are have you taken the precautions we need to take to avoid cross contamination? You need your own toaster for gluten free breads, a new strainer for gluten free pastas and your own condiments, butter, nut butters etc. You should also avoid dairy for right now as until we heal most of us have a very hard time digesting it. If your significant other uses lipstick or chapstick type products do make sure they are gluten free. Also do check with the makers of any meds or supplements you take to make sure they are gluten free and be sure to avoid supplements that have wheat or barley grass. Things can be up and down for us especially at first. You had a previous post where you stated you had been better for the first 3 days of the diet but then went back on gluten so you could be tested. At least I think you said you went back on it. That is a good indication that the diet will help you but we do often find that we are more sensitive to very small amounts after we go gluten free so do take all the precautions that you can.

I hope your feeling better soon.

[NateJ]

Are you eating mostly whole unprocessed foods? Are you living with other gluten eaters and if you are have you taken the precautions we need to take to avoid cross contamination? You need your own toaster for gluten free breads, a new strainer for gluten free pastas and your own condiments, butter, nut butters etc. You should also avoid dairy for right now as until we heal most of us have a very hard time digesting it. If your significant other uses lipstick or chapstick type products do make sure they are gluten free. Also do check with the makers of any meds or supplements you take to make sure they are gluten free and be sure to avoid supplements that have wheat or barley grass. Things can be up and down for us especially at first. You had a previous post where you stated you had been better for the first 3 days of the diet but then went back on gluten so you could be tested. At least I think you said you went back on it. That is a good indication that the diet will help you but we do often find that we are more sensitive to very small amounts after we go gluten free so do take all the precautions that you can.

I hope your feeling better soon.

I've eliminated milk, corn, eggs, and gluten so far. no major changes to my symptoms yet.

I am eating whole foods and keeping a journal. I haven't been able to figure out anyone one thing that sets me off as I haven't had a 'good day' yet. Coffee for sure is a major problem for me. at least the work coffee is, so i quit that all together. I haven't checked on my meds yet. do the capsule ones have gluten?

I never did go back on the gluten, i was off for 14 days when i had my biopsy done. so maybe it was a false negative, not sure. I wish i could have spoken with the Dr. but he hasn't reviewed my results yet.

I definitely have some work still to do. The pots and pans might be a problem. and the condiments thing. I guess washing them in the dishwasher doesn't help get rid of it? i would think that hot water and such would blast the stuff?

thanks for the tips. I have much work to do

[eatmeat4good]

Many people use a dishwasher so that shouldn't be a problem, but with pots and pans used for cooking gluten you have to clean before they go into the dishwasher. (In my opinion) The medication yes, if one of your capsules has gluten in it and you take it every day, Wa La, sick every day. Also if your family isn't gluten free and you kiss them before they brush their teeth you can get sick. I didn't believe that one, but you watch...it is true. I tested it. Little hands that ate cookies can get gluten on you and in you. I handed a cookie to my sister's kid and then happily munched on nuts thinking gluten free ain't so bad. Next day sick. If you touch gluten you have to wash your hands. Sanitizer isn't doing anything to gluten. Let's see, I think that is all the ways I have glutened myself aside from eating in restaurants supposedly gluten free. If you can get your whole family to go gluten free, you will stay a lot healthier. But at least have your own station where no gluten is allowed.

I got sick for two days after I de-glutened the kitchen and got rid of flour and products. If your wife bakes or I should say if anyone bakes, flour can hang in the air a long time and you can easily breathe it in and down your throat...and make you sick the next day. Also if you have pets, they can get you with their gluteny food. wash after feeding and don't let them lick you or feed them gluten free too.

It is overwhelming at first, but you will feel so much better if it really was any of these things people have listed and you finally figure it out.

Hang in there.

[NateJ]

Many people use a dishwasher so that shouldn't be a problem, but with pots and pans used for cooking gluten you have to clean before they go into the dishwasher. (In my opinion) The medication yes, if one of your capsules has gluten in it and you take it every day, Wa La, sick every day. Also if your family isn't gluten free and you kiss them before they brush their teeth you can get sick. I didn't believe that one, but you watch...it is true. I tested it. Little hands that ate cookies can get gluten on you and in you. I handed a cookie to my sister's kid and then happily munched on nuts thinking gluten free ain't so bad. Next day sick. If you touch gluten you have to wash your hands. Sanitizer isn't doing anything to gluten. Let's see, I think that is all the ways I have glutened myself aside from eating in restaurants supposedly gluten free. If you can get your whole family to go gluten free, you will stay a lot healthier. But at least have your own station where no gluten is allowed.

I got sick for two days after I de-glutened the kitchen and got rid of flour and products. If your wife bakes or I should say if anyone bakes, flour can hang in the air a long time and you can easily breathe it in and down your throat...and make you sick the next day. Also if you have pets, they can get you with their gluteny food. wash after feeding and don't let them lick you or feed them gluten free too.

It is overwhelming at first, but you will feel so much better if it really was any of these things people have listed and you finally figure it out.

Hang in there.

well the kitchen is pretty much gluten free now. We went through it last night. Since I do most of the cooking anyway I dont' have to worry about anyone else contaminating it. The only stuff is prepackaged snacks and bread for my kids lunches that they pack themselves.

I am worried about the pills though. I called my pharmacy and they actually hung up on me!

I need two refills soon so I guess I'll have to go up there and ask them in person.

As far as the kissing my kids, etc... I'm willing to risk it. But its nice to know. Something I didn't think about really before.

Now if I can just get better for a day or two.....

[frieze]

well the kitchen is pretty much gluten free now. We went through it last night. Since I do most of the cooking anyway I dont' have to worry about anyone else contaminating it. The only stuff is prepackaged snacks and bread for my kids lunches that they pack themselves.

I am worried about the pills though. I called my pharmacy and they actually hung up on me!

I need two refills soon so I guess I'll have to go up there and ask them in person.

As far as the kissing my kids, etc... I'm willing to risk it. But its nice to know. Something I didn't think about really before.

Now if I can just get better for a day or two.....

Gabapentin (Apotex, Greenstone)

these two generics and brand name neurontin are supposed to be gluten free, if your neurontin is not brand or made by either of those two other companies, all bets are off. good luck

[NateJ]

Gabapentin (Apotex, Greenstone)

these two generics and brand name neurontin are supposed to be gluten free, if your neurontin is not brand or made by either of those two other companies, all bets are off. good luck

Thats exactly what I'm taking. Gabapentin 100 MG cap Greenstone LTD

Where did you find that info?

I'm also taking Questran (Generic Cholestrymine sp?) and a Prevacid generic.

THANKS!

[rosetapper23]

For medications, you can check www.glutenfreedrugs.com , but I ALWAYS call the laboratory directly that manufactures the pills. Sometimes the pharmacist is willing to make the call, but since I usually pick up prescriptions after work and the labs have closed already, I can get stuck with not knowing if something has gluten in it. Still, I place a call or send an e-mail to the company...sometimes someone will answer me late at night or over the weekend. With all the generics out there, you have to read your pill bottle EVERY time you pick up your usual prescription because they can switch companies on you. Be especially suspicious of red-coated pills (e.g., Claritin Red Tabs).

Also, are you using iodized salt? Many of us are sensitive to or outright allergic to iodine, so if yours is iodized, toss it and buy some non-iodized salt. Just a thought.

[NateJ]

For medications, you can check www.glutenfreedrugs.com , but I ALWAYS call the laboratory directly that manufactures the pills. Sometimes the pharmacist is willing to make the call, but since I usually pick up prescriptions after work and the labs have closed already, I can get stuck with not knowing if something has gluten in it. Still, I place a call or send an e-mail to the company...sometimes someone will answer me late at night or over the weekend. With all the generics out there, you have to read your pill bottle EVERY time you pick up your usual prescription because they can switch companies on you. Be especially suspicious of red-coated pills (e.g., Claritin Red Tabs).

Also, are you using iodized salt? Many of us are sensitive to or outright allergic to iodine, so if yours is iodized, toss it and buy some non-iodized salt. Just a thought.

I do used iodized salt, but no more than 2-3 times a week. Its not an everyday thing for me and depends on what I'm cooking. Usually I just put a dash in water if I'm boiling it for rice or something.

I will switch that too.

I checked out your list and all three of the brand names are on there that I take, but the generics are not. I guess I'll have to check with my pharmacy.

[ravenwoodglass]

I do used iodized salt, but no more than 2-3 times a week. Its not an everyday thing for me and depends on what I'm cooking. Usually I just put a dash in water if I'm boiling it for rice or something.

I will switch that too.

I checked out your list and all three of the brand names are on there that I take, but the generics are not. I guess I'll have to check with my pharmacy.

If you don't have the skin lesions then iodized salt is not going to be an issue for you. Iodine is only an issue for those with DH.

The label on your script bottle or the monograph that the pharmacy gives you should have the maker on it. It is best to call the maker if you can. If you put thier name and the words contact info in a search engine you can usually get the phone number. Generics can change binders at will so unless the company states that all their items are gluten-free it is best to check at each refill. I always tell the companies I have an allergy to wheat rather than celiac because some will consider wheat starch to be safe.

[NateJ]

If you don't have the skin lesions then iodized salt is not going to be an issue for you. Iodine is only an issue for those with DH.

The label on your script bottle or the monograph that the pharmacy gives you should have the maker on it. It is best to call the maker if you can. If you put thier name and the words contact info in a search engine you can usually get the phone number. Generics can change binders at will so unless the company states that all their items are gluten-free it is best to check at each refill. I always tell the companies I have an allergy to wheat rather than celiac because some will consider wheat starch to be safe.

No, i don't have any lesions. I think i would freak out if I did.

I have always had those bumps on the back of my upper arms. I read somewhere that is a symptom of Celiac. Can't remember where or what they call them.

I'm going to check my pills when I get home. I left two of them on there, but someone here confirmed my main one is gluten free for me yesterday. I'm more worried about the Questran powder and the prevacid cause those I can't find much info on.