I'm So Glad I Got Scoped Again

[melrobsings]

So as most of yall know I just had another scope because (mind you this has been going on and off since CHRISTMAS and I have been to 2 doctors and looking for my 3rd doctor) I have had bleeding and I am pooing poos 1/2 my weight about 5 times a day. To me, that means SOMETHING IS WRONG. Well this last a-hole scoped me a week ago scoped me because he thought it was a hemeriod and cotterized it. Fine. dandy.

Then after I woke up he brought me into his office and told me in short that I was a hypochondriac and there is no way i have any kind of gluten allergy.

This pissed me off to no end....but here is the kicker.

I'M STILL BLEEDING!!!! WTF?!??!? anyone got ideas? I'm terrified it's Chrones.

So I'm once again looking for a NEW doctor that LISTENS, is smart, and educated in celiac disease...oh and one that my insurance takes. People PLEASE list any and all doctors that you know of in NYC or Astoria area that take insurance. I know some of yall have told me about them but they are to far from me and don't take my insurance. Thanks so so so much.

[ravenwoodglass]

He sounds like a real winner, did he do both ends? Did he do a full colonoscopy with biopsies? Or did he just do a sigmoidoscopy since he was so convinced it was hemmies? It sounds like he knows nothing about celiac. I wish I had a good doc for you but I am upstate and am looking myself.

[Phyllis28]

I do not live in the NYC area so I can not help you with specific doctors. When I needed to locate a GI recently I looked at on the websites of the universities that had medical schools and hospitals in the area. Both UCLA and UCI (UC = University of CA) had information of their doctors including their interests. I also, contacted the local support group and received a couple of names. I ended with the doctor who worked for UCI (University of CA at Irvine) and was recommended by the support group. The only problem was and still is the two month wait for an office appointment.

[happygirl]

1. Call your insurance company and ask for a list of GI doctors in your area.

2. Call/Email the local Celiac support group and ask for a list of recommended/not recommended doctors. Call those drs and find out if they take your insurance.

[deesmith]

So as most of yall know I just had another scope because (mind you this has been going on and off since CHRISTMAS and I have been to 2 doctors and looking for my 3rd doctor) I have had bleeding and I am pooing poos 1/2 my weight about 5 times a day. To me, that means SOMETHING IS WRONG. Well this last a-hole scoped me a week ago scoped me because he thought it was a hemeriod and cotterized it. Fine. dandy.

Then after I woke up he brought me into his office and told me in short that I was a hypochondriac and there is no way i have any kind of gluten allergy.

This pissed me off to no end....but here is the kicker.

I'M STILL BLEEDING!!!! WTF?!??!? anyone got ideas? I'm terrified it's Chrones.

So I'm once again looking for a NEW doctor that LISTENS, is smart, and educated in celiac disease...oh and one that my insurance takes. People PLEASE list any and all doctors that you know of in NYC or Astoria area that take insurance. I know some of yall have told me about them but they are to far from me and don't take my insurance. Thanks so so so much.

Doctors! I know just how you feel!

How do you feel about going to Columbia University Celiac Center in NYC? I don't want to steer you in the wrong direction, because as someone else on this site has said, Dr. Green is great but not good about calling you back. However, they may take your insurance and if it's a diagnosis you're looking for, this might be worth looking into to.

[happygirl]

Dr. Green is one of the leading Celiac experts, and its worth a shot, especially since he is so close to you.

www.celiacdiseasecenter.columbia.edu

[gfpaperdoll]

oh so sorry, you had one of the most idiot of the bunch jerk doctor...

when you do find a doc be sure to check your clotting factors etc. & get a full blood workup...

have you checked on line to find all the causes of rectal bleeding...

This is the opposite end, but my sister is double DQ1, confirmed by blood tests, & enterolab (gluten-free&DF) she is 52, & has a bleeding blood vessel in some part of her brain, (she was in medical field so she knows all the terms that I cannot then remember!!) they have done the scans, something that was better than an MRI, & they are just going to watch it.

[Jestgar]

have you checked on line to find all the causes of rectal bleeding...

Does any one else occasionally get miffed because they have to diagnose themselves before going to the doctor?

[Fiddle-Faddle]

Sorry to play armchair physician here, but is it black, tarry stools (which could be a symptom of something really really wrong), or is it bright red bloody stools, or is it huge poops with a bit of red blood at the tail end?

I do think your doctor is most likely a total idiot in addition to being a jerk, but I'm wondering less about the hemorrhoids, and more about what is causing the enormous poops (which I think would be tearing tissue on the way out and breaking blood vessels, causing the bleeding).

I am not a physician, so it's very likely that I am missing something here. But not being a physician, I say YOU ARE NOT A HYPOCHONDRIAC. And your physician is certainly an idiot if he's talking about gluten allergy here--celiac has nothing to do with allergies, it's an autoimmune disorder and would not show up on allergy tests (but you already knew that, I bet).

Enormous poops are not normal, and are stressing the bejeebers out of your tuchus.

Would you consider posting a few days of your typical diet, and maybe somebody here might notice some kind of connection between what goes in your mouth and what comes out the other end?

Also--what meds (if any) are you on?

Any other symptoms? Anything that might be related to endocrine, like thyroid or diabetes?

[Fiddle-Faddle]

Does any one else occasionally get miffed because they have to diagnose themselves before going to the doctor?

Yes, but if I have myself for a physician, at least I know my physician listens!

[melrobsings]

THANK YOU SO SO SO MUCH EVERYONE!!! OK So I have been gluten-free for a few years cause I didn't have insurance at the time and was sick of being sick and went to a clinic and the doctor said "you have celiac, you have the rash and all the symptoms but I'm not going to test you cause it costs to much, just read up and cut out Gluten." I did, my acne was gone, my rash got way better (flairs up when contaminated), i felt better all around.

I'm calling Dr. Green FIRST THING Monday morning....I'm taking it this "Dr. Green" is the guy that wrote that BRILLIANT book?! I love him already!

I don't get miffed about stupid doctors I get down right pissed off!

I have looked a bit online on bleeding and mostly it's all about hemmies.

I had a colonoscopy in Jan, this time he just did the hemmies thing but I still had to drink that horrid crap. oh and PS if you mix it with ginger ale, IT'S THE ONLY WAY TO GO! It's way better!

OK Now as for the bleeding, it comes in all forms.

I'm rarely constipated...and I mean almost never. My poos have been HUGE but nice ones, they feel normal and soft. They aren't huge coming out, there is just a LOT of it! I have been getting a lot of diarrhea. I get blood at random times and I have been keeping mental notes and I'm not getting a "oh when i get the runs it bleeds only then", it's totally sparatic.

Now color range... It was just bright red and would rage from a few drops to 1/3 a cup. Then about 6 weeks ago i started getting deep, dark red blood on occasion too. That is when I started FREAKING out.

Any thoughts?

[melrobsings]

oh and might I add...

when I get CCed I bleed and bleed and bleed.

I get ILL every time i eat gluten or get CCed. My mom has 2 auto immunes, my aunt has one, my other aunt had one, my brother has one and my grandmother has one.

and my diet...

nothing has changed, when it comes to food I'm very into habits and fresh food it's fresher, yummy and just GREAT! Also it's a no brainer when it comes to "is this gluten-free?" I eat fresh vegies, fresh free range and no hormone meat, free range and healthy fed eggs, whole foods gluten-free bread, gluten-free cerial, fruit, milk, cheese (no blue), gluten-free coffee, and all the snickers bars I can eat! I drink water mostly, sometimes coke and sometimes tea and wine.

am i doing anything wrong?

[Fiddle-Faddle]

am i doing anything wrong?

Difficult question to answer! Your diet certainly looks very healthy, especially compared with the typical diet of this country!

In my own experience, coffee gives me the runs, the pre-made gluten-free breads (like Whole Foods breads) gave me tummy-aches (felt like I'd swallowed a brick), and I had to cut out dairy for a few months (gassed and bloated me like mad).

Homemade gluten-free breads do not give me problems. Can't quite figure out why, as the ingredients are the same. I'm ok with dairy now, and I can drink green tea (healthier than coffee, anyway).

I'd kinda wonder about the Coke, too--seems like it would cancel out all those healthy things you are eating!

I was making my own candy bars until this summer, when it was just too hot to bake. Nothing fancy, just plain old sugar, butter, chocolate, peanut butter, etc. Last month, I bought some peanut M & M's, which I used to LOVE--and I was totally shocked at how gross they tasted. It's amazing, the chemical tastes we can get used to. So, I wonder if it's worth making your own Snickers bars?

And the cereals--hmmm, a lot of people say that our tummies simply are not made for processing grains. They're probably right--but I love Mesa Sunrise cereal! I expect there are a lot of arguments on both sides.

What about rice--can you eat that?

[melrobsings]

I can eat rice but I don't eat it very often. i'm not a health freak by choice really lol just cause it's easy (and might i briefly step on my soap box: you damn americans who eat fast food cause it's "easy and you don't have time" GROW UP and stop complaining your fat! it takes the same time to make a salad that it does to get in your car and drive to mcdonalds! it's all about taking responsibility...thank you for listening).

I have to confess I'm a MAJOR candy girl! (might I back that up with I'm a dancer and am very active, I eat them cause I can! Clearly I'm one of those "if the pants fit great, if they get tight, cut out something!" I'm 5 foot 2 and 110 pounds) I have cut down cause I just haven't felt like eating it since I'm bloating LOTS....but I have a huge mikasa bowl on my coffee table and the rule is "it always has to be full". All my friends are GREAT and funny cause they say "Mel can only eat candy, so instead of going out to dinner we go to her coffee table and can eat together!" and they bring candy every time they come over! Right now it's full of tootsie rolls, normally it's full of snickers and full size hershey bars.

I love coffee cause of the taste.

Do you mind posting a snickers like recipe?! i LOVE to bake! The whole foods bread is the only one that doesn't feel like brick to me! I CAN'T GET ENOUGH! not to mention they are great in the toaster oven! I'm cutting down on the coke cause I don't want to gain weight and it is easy to replace that with tea.

I'm with you on the grains, I don't think we are supposed to have them...

Guys I'm SO EXCITED to call Dr. Green!!! I'm hoping I can get in fast (and he takes my insurance...minor detail! lol) and praying that I don't have to cut out dairy. I FEAR that is the issue...well part of the issue...I'm starting a food/poo journal today and hopefully it will tell me something.

Again I can't thank you all enough for everything!!!

[happygirl]

I'm calling Dr. Green FIRST THING Monday morning....I'm taking it this "Dr. Green" is the guy that wrote that BRILLIANT book?! I love him already!

Yes, that is the one and the same.

It might take a little while to get in, so in advance, I would get all your medical records (including when you were seeing the dr that told you gluten was a problem, and the copies of your latest scope, etc.) Have them sent to you, so you can keep a copy (so that you always can make a copy for another dr, rather than having to keep going back to an old dr office to obtain records). Make a full set of copies and send to Dr. Green's office (or, for that matter, any office that you go to) before you get in to see them. It will make your first app't way more productive.

Make sure that you explain your situation as to why you weren't "properly" diagnosed, also, so that he (or any dr) understands that you aren't there for a gluten challenge (i.e., to make yourself sicker by eating gluten, when you already know gluten is a problem.)

Hope that these tidbits help out some, and that you find some much needed answers.

[Fiddle-Faddle]

SNICKERS COPYCAT BARS

2 cups chocolate chips, divided

*

1 /2 cup butterscotch chips, divided

*

3 /4 cup creamy peanut butter, divided

*

1 cup sugar

*

1 /4 cup milk

*

1 /4 cup margarine

*

1 cup marshmallow creme

*

1 teaspoon vanilla

*

1 1 /2 cups dry-roasted peanuts

*

40 caramels

*

4 tablespoons water

1.

Melt and spread 1 cup chocolate chips, 1 /4 cup butterscotch chips, and 1 /4 cup creamy peanut butter in buttered 9x13-inch pan. Cool. Boil sugar, milk, and margarine for 5 minutes to soft ball stage. Add marshmallow creme, 1 /4 cup peanut butter, and vanilla. Pour over first layer. Sprinkle peanuts over second layer. Melt together caramels and hot water, and pour over peanuts. Melt 1 cup chocolate chips, 1 /4 cup butterscotch chips, and 1 /4 cup creamy peanut butter and spread over caramel layer remaining. Cool and cut into squares.

[Fiddle-Faddle]

Right now it's full of tootsie rolls,

Last time I checked tootsie roll ingredients (Hallowe'en leftovers, January of '06), they had wheat starch listed in the ingredients. You might want to double-check those...

[ravenwoodglass]

I can eat rice but I don't eat it very often. i'm not a health freak by choice really lol just cause it's easy (and might i briefly step on my soap box: you damn americans who eat fast food cause it's "easy and you don't have time" GROW UP and stop complaining your fat! it takes the same time to make a salad that it does to get in your car and drive to mcdonalds! it's all about taking responsibility...thank you for listening).

I have to confess I'm a MAJOR candy girl! (might I back that up with I'm a dancer and am very active, I eat them cause I can! Clearly I'm one of those "if the pants fit great, if they get tight, cut out something!" I'm 5 foot 2 and 110 pounds) I have cut down cause I just haven't felt like eating it since I'm bloating LOTS....but I have a huge mikasa bowl on my coffee table and the rule is "it always has to be full". All my friends are GREAT and funny cause they say "Mel can only eat candy, so instead of going out to dinner we go to her coffee table and can eat together!" and they bring candy every time they come over! Right now it's full of tootsie rolls, normally it's full of snickers and full size hershey bars.

I love coffee cause of the taste.

Do you mind posting a snickers like recipe?! i LOVE to bake! The whole foods bread is the only one that doesn't feel like brick to me! I CAN'T GET ENOUGH! not to mention they are great in the toaster oven! I'm cutting down on the coke cause I don't want to gain weight and it is easy to replace that with tea.

I'm with you on the grains, I don't think we are supposed to have them...

Guys I'm SO EXCITED to call Dr. Green!!! I'm hoping I can get in fast (and he takes my insurance...minor detail! lol) and praying that I don't have to cut out dairy. I FEAR that is the issue...well part of the issue...I'm starting a food/poo journal today and hopefully it will tell me something.

Again I can't thank you all enough for everything!!!

The diet you listed sounded great in the other post, this bit now that is an eyeopener. Have you tried cutting out the candy and the cokes for a couple of weeks or a month? This would be the very first thing I would do.

[happygirl]

tootsie rolls are safe.

Open Original Shared Link

"We are pleased to be able to inform you that, at this time, all of our confections are gluten, peanut and nut product free. We do not use wheat, barley, rye, oats, triticale, spelt or any of their components and that includes our manufacturing process. We do use corn and soy products in the manufacturing of our products."

[Fiddle-Faddle]

Woo-HOO, I can have Tootsie rolls again!!!!! Sweet! (literally...)

[gfpaperdoll]

The first thing that I would do is to quit eating the bread & the cereal. well I would also give up dairy which is also in those candy bars. Being a former memer of a precision exhibition clogging team (that went to Europe twice!! to represent the USA in the 1st & 2nd world folk dance festival), I understand about the need for calories & that you can have them!!!!!

try giving up the grains & dairy for a couple of weeks & see what happens. keep a food journal.

well I do not drink coffee or sodas but we all have our own limits!! I will say that you might want to switch to sprite at least, I think there are less chemicals in them...

you can make your own homemade fudge with coconut milk & dairy free chocolate chips. I get the sunspire chocolate chips at Whole Foods.

ooooh Dr. Green, let us know when you see him...

[Nic]

Hi, my 6 year old son is Celiac and dairy intolerant. Oddly, the syptoms that led us to the Celiac were actually caused by the dairy. He was constipated, which I know you are not, but his poop was never hard. And when he did go, MY GOODNESS, he would fill the toilet with soft poop. We couldn't imagine how all of that poop fit inside of him. And yes, he would bleed. Now my friend's son does not have Celiac but is dairy intolerant and it is the same thing. Tremendous poops that are soft. Both boys are dairy free now and both are pooping normally now. Have you checked into dairy?

Nicole

[bluejeangirl]

Are you eating beets? When you have a fast bowel beets come out red. Hope you can get some answers!

Gail

[darkangel]

when it comes to food I'm very into habits and fresh food it's fresher, yummy and just GREAT! Also it's a no brainer when it comes to "is this gluten-free?" I eat fresh vegies, fresh free range and no hormone meat, free range and healthy fed eggs, whole foods gluten-free bread, gluten-free cerial, fruit, milk, cheese (no blue), gluten-free coffee, and all the snickers bars I can eat! I drink water mostly, sometimes coke and sometimes tea and wine.

am i doing anything wrong?

Well, yes. Something is obviously still causing serious problems for you. It would be nice if just going gluten-free could be the answer for everyone, but a diseased gut often requires a much more careful diet... particularly in the presence of frequent bleeding.

There's a great book called Listen to Your Gut by Jini Patel Thompson. I'd highly recommend it. Here are the things I've discovered from all of my research to be problems for people with any kind of digestive disease:

Caffeine - Inhibits absorption of vitamins and minerals. Coffee is the worst thing you can drink. Really aggravates the colon, in particular.

Carbonated drinks - The last thing you need is more gas, sugar or caffeine in your system.

Milk/milk products - Most folks with gluten intolerance also have problems with dairy. It could be the lactose or it could be the casein or both.

Raw or lightly cooked vegetables - It's very hard for a compromised digestion to break down the tough fiber matrix in raw or lightly cooked veggies and vegetable and fruit peels.

In Jini's book she gives dietary guidelines for various symptoms, in order of severity. Below are the guidelines to stop intestinal bleeding. This is the most strict diet before having to go on a bowel rest elemental diet. I'm not trying to frighten you, but impress on you the seriousness of your situation.

Stop Intestinal Bleeding Diet

Eliminate:

Alcohol, caffeine, decaffeinated coffee, carbonated drinks.

Cheese, cream sauces, milk products.

Sour, vinegary, acidic foods and condiments.

Tomatoes, tomato-based foods.

Citrus fruits or juices, pineapple, grapes, cherries, raspberries.

Cabbage family vegetables, beans, lentils, raw vegetables, coconut, roughage/high fiber foods, leafy green vegetables, hot/spicy foods, deep-fried foods, red meat, nuts and seeds.

Margarine or butter substitutes, artificial sweetners, carrageenan.

Yeast, sugar if necessary.

Garlic, ginger, cumin, chilies, pepper, paprika, tumeric.

Processed foods; preservatives, MSG, nitrates, etc.

Do eat:

Eight glasses of spring water/day, weak Japanese green tea.

Well-cooked carrots, zucchini, pumpkin, potatoes, sweet potatoes, yams. Acorn, butternut and spaghetti squash. Avacados, cucumber, regular and shiitake mushrooms, seaweed, tofu.

2 eggs/day maximum, non-oily fish; sole, cod, sea bass, monkfish. Shrimp, scallops, chicken and turkey. Meat or vegetable broths.

Basmati rice, dry curd cottage cheese.

Well-ripened bananas, baked apples and pears, organic, no sugar added applesauce.

Light, extra-virgin or virgin olive oil; cold-pressed sesame, flax, hempseed or sunflower oil.

Basil, oregano, thyme, dried cilantro, gluten-free soy sauce.

[deesmith]

I have to confess I'm a MAJOR candy girl!

Me too! Since going gluten-free, I eat more (not tons, just more) I guess so I don't feel so deprived. This has leveled off a little, thank god.

I'm with you on the grains, I don't think we are supposed to have them...

Oh, Dr. Green will love you, because this is what he says!

Guys I'm SO EXCITED to call Dr. Green!!! I'm hoping I can get in fast (and he takes my insurance...minor detail! lol)

I hope you get in soon too; let us know. I'm excited for you.

and praying that I don't have to cut out dairy.

Just to let you know... this is what Dr. Green told me about the dairy: he said if I can put up with the symptoms, that's up to me, because eating the dairy doesn't cause damage. But to be honest, I found that sometimes I actually can't put up with the symptoms. Sometimes, if I overdo it on the dairy, or I've been glutened, I get really, really bloated and more constipated. So I have to cut it out for a while. Then I slowly add it back in.

Hope you get some answers you need. Oh, and yes, he's THE Dr. Green (as my sister calls him) the one that wrote the book.