Soooo Confused! Please Help!

[still coping]

Following (failed) lumbar surgery Sept. 2005, because of extreme pain in intestines and left side (aside from horrendous pain in spine), I finally sought advice of nutritionist. In Feb. 2007, nutritionist suggested I be tested by EnteroLab, as she also had gluten sensitivity diagnosed by them. My results showed positive for gluten and casein; Lab said as casein positive, undoubtedly soy would be as well, even though not specifically tested. Also, genetics test showed BOTH parents had this, although I know none of us knew anything about it. Overwhelmed by restrictions, I thought I was sticking to Gluten-free Casein-free diet at least 80% (couldn't give up dairy in coffee and morning muffin at work). Never realized it truly had to be 100%, period! And worse, not until I read Gluten-Free Girl's book recently and her pain descriptions, did I realize the extent to which gluten/casein was causing intestinal pain! (After years of other tests, found my intestines had "small bowel loops" or kinks as a result of lumbar surgery, but never connected the dots to gluten/dairy.) I've since become anemic and had a ton of dental problems, and didn't realize these metals (iron/calcium) were first to be affected per my pain management doctor, so am taking both iron and calcium supplements, plus probiotics and Colostrum. Because intestines so twisted, aside from gluten/casein/soy restrictions, I also couldn't get protein (meat, poultry except for a little chicken/eggs which I've since given up after viewing documentary "Food, Inc." recently) to even pass through my body w/o excruciating constipation for days! So I'm currently (post-22 sessions with acupuncturist who did deep tissue massage along with needles in stomach area and spine) relatively pain free in intestines as long as I don't consume a crumb of gluten/casein/soy. I've had so many sypmtoms, in addition to pain, including losing 80 lbs. first year following surgery as I couldn't eat more than 1/2 to one cup of food at a time then wait three hours because of the pain, and overactive bladder following surgery so wake up every 2 hours to go to the bathroom and get no refreshed sleep. Asked acupuncturist why food still not passing through body any easier or quicker (barely at all); he said the spasms from pain at least pushed it along somewhat despite twisted areas. Now that intestines are more flat, I think possibly villi may be permanently damaged and lying flat (Celiac Disease), even though I'm finally only recently 100% gluten/casein/soy free fearing cancer next. If I try to eat more than in the past, it only piles up against my left side and I'm in excruciating pain til I finally am forced to take a laxative to have any decent bowel movement at all. So I basically am eating as before, 1 cup of 1 type of food at a time and wait 3-4 hours, thus still barely consuming 500 calories a day which is starvation and will end up with malnutrition and worse. As medical community disputes EnteroLab results saying too many false positives, I hesitate to waste money on blood/small bowel biopsy fearing it will show false negatives! And I still fight and have difficulty daily figuring out what to eat, so only eat fruit, vegetables (except nightshades) and fish. I am bored to death! I know food is meant to be nourishment and not entertainment, but can't seem to make eating enjoyable any more as it's been such a battle ground for the past four years. Do you think I should go the medical community route and have blood test and small bowel biopsy despite possible negative results, and then I've spent all that money for nothing, yet I know I have these issues because of all I've been through! Any suggestions? Thank you for your time.

[ang1e0251]

My response might not be very popular but I think you've been tested to death! Your system sounds like it has been through the ringer! Your accupuncture seems to be helping you and now that you are serious about the diet, you system is responding. It may take more time to heal, for some it's at least two years. I know you are impatient and bored with your diet but you didn't get in this shape overnight and you're not going to heal overnight either.

In the meantime, you need more calories. How doyou handle vitamin rich foods like avocado, coconut milk and meat broth? Broth doesn't have a lot of calories but it can get your system used to meats and is gentle on your system. You could use it as some of your drink intake for the day. Also it can have salt that your body needs to live. Can you handle warm cereals like buckwheat, rice or quinoa? All these would help to nurish you if you can eat them. Can you eat goat's cheese? I didn't see any rice on your list. Is that OK? It really would be filling for you.

Let us know a little more about what you can eat.

[still coping]

My response might not be very popular but I think you've been tested to death! Your system sounds like it has been through the ringer! Your accupuncture seems to be helping you and now that you are serious about the diet, you system is responding. It may take more time to heal, for some it's at least two years. I know you are impatient and bored with your diet but you didn't get in this shape overnight and you're not going to heal overnight either.

In the meantime, you need more calories. How doyou handle vitamin rich foods like avocado, coconut milk and meat broth? Broth doesn't have a lot of calories but it can get your system used to meats and is gentle on your system. You could use it as some of your drink intake for the day. Also it can have salt that your body needs to live. Can you handle warm cereals like buckwheat, rice or quinoa? All these would help to nurish you if you can eat them. Can you eat goat's cheese? I didn't see any rice on your list. Is that OK? It really would be filling for you.

Let us know a little more about what you can eat.

[still coping]

My response might not be very popular but I think you've been tested to death! Your system sounds like it has been through the ringer! Your accupuncture seems to be helping you and now that you are serious about the diet, you system is responding. It may take more time to heal, for some it's at least two years. I know you are impatient and bored with your diet but you didn't get in this shape overnight and you're not going to heal overnight either.

In the meantime, you need more calories. How doyou handle vitamin rich foods like avocado, coconut milk and meat broth? Broth doesn't have a lot of calories but it can get your system used to meats and is gentle on your system. You could use it as some of your drink intake for the day. Also it can have salt that your body needs to live. Can you handle warm cereals like buckwheat, rice or quinoa? All these would help to nurish you if you can eat them. Can you eat goat's cheese? I didn't see any rice on your list. Is that OK? It really would be filling for you.

Let us know a little more about what you can eat.

Since I'm new to this Forum, not sure if this is proper way to reply to you, my one and only response today. Sorry for the length; I don't know if there's a limit? I had so much to try to cram into a small space, I didn't share much about what I do eat. My standard breakfast is gluten-free corn flakes from Mother's with almond milk and fresh blueberries (my one splurge), then it's catch-as-catch-can the remainder of the day. Because of the oatmeal controversy, I don't eat it any more, but also because it's literally like glue, and the same for any type of rice -- because of its consistency, it clogs my system up completely for days! I've tried and tried this, and have finally given up, so I assume any warm cereal would have the same effect on my body -- like glue. Coconut milk or coconut water is okay, though I'm not fond of the taste as it's so rich. My nutritionist asked me to not drink water (or any drink) with meals as it would destroy whatever enzymes might be at work, so if I eat something dry it tends to clog up my system as there is no fluid in the mix to make it flow more easily through my body. My acupuncturist told me not to drink anything cold, as my stomach would go into spasms, and he's absolutely correct! I'm very sensitive to salt having done w/o it the past four years. (I've never liked salt as my mother would over-salt my eggs as a child. I also have a strong reaction to trying to eat cream of rice, as she would make cream of wheat during school weekday mornings, alternating w/oatmeal, but would make me drink the cream of wheat from a glass, as she was in a hurry to get me to school and her and my father to work.) Thankfully, they had a fruit/produce store which I grew up working in, so ate plenty of all types of fruits/veggies growing up and love most of them. It's a good thing, because it's practically all I can eat! The very thought of cream of rice or warm cereal makes me gag with memories of trying to drink cream of wheat w/lumps as a child. Nuts, huh? As for beef broth, every time I consume anything w/salt, or even spray one spritz of Organiclean (fruit/vegetable wash to remove pesticides/chemicals), I end up w/splitting headache and have to take Excedrin which I don't want to do before it damages my stomach further and I start bleeding. Trust me, I've tried everything over the past four years that I can think of, and so end up pretty much w/breakfast noted above, then eat plain fruit in evening when craving sweets and for lunch, and steamed veggies for dinner. (I can't eat more than one thing or even veggie at a time, as my body just doesn't break it down to metabolize it let alone retain any nutrients.) Or I'll have a sweet potato, or asparagus, or broccolli. Yes, I can eat avocado by itself, but if I try to even make a small salad -- if I add lettuce, little cubed beets, petite peas (I love the latter two veggies), avocado and a little cucumber -- I'm bloated and clogged up for days! (Intuitively, I didn't even try avocado or salad until this past year.) I've tried this repeatedly, as with rice or warm cereal, the reaction is the same. It's too much for my intestines to handle more than just one item at a time or something with the consistency of glue. I know it sounds crazy, but that's what I'm dealing with for four years. My nutritionist kept telling me to try to eat more, a little chicken, and one or two veggies for dinner, and though I love her to death, honestly, I got tired of paying her to tell me the same thing over and over even though I kept telling her the same results I'd have, it's like she wasn't hearing me. I also can eat nuts, but not peanuts. So I keep Lara bars and Trio bars (both are gluten-free/cf/sf) in my car when I'm running errands and am starved. But even with these, if I consume more than one, it's too much, too heavy consistency and dry, and it too will block me up. I literally go into Whole Foods or the regular supermarket, walk the aisles and cry! I'm so hungry all the time. Every time I've tried to eat out, even after questioning people who don't care let alone understand so simply say whatever I question is okay, I get sick. Not sure at all what to do, as even protein powders seem to have a ton of vitamins, and I already take plenty of vitamins as I know I desperately need them and don't want to overdose on vitamins, as I did when I did try protein powders and my blood was being tested for anemia which I have. Those that have amino acids only make me gain weight instantly! A doctor once diagnosed me with thyroid disease (still questionable whether I actually had it) and had me take bottles and bottles of different amino acids -- before I knew it I'd gained 30 lbs. I've tried so many things, I'm about to go crazy if I don't figure this out, either that or just give up and eat as I've been doing and not getting enough calories. My nutritionist's theory was that the more I could get into my body, hopefully something would be metabolized, but I just can't eat that much w/o pain on my left side when everything finally reaches the end of the road and simply piles up and then doesn't move. I have no chance in the world of even having a tiny bowel movement if I don't take two Dulcolax every night, and that's not a guaranty. My acupuncturist has me do round circles of massage on my stomach with my fist while lying down, then put a heating pad on my stomach for 10-15 min. after every meal, and sometimes that helps. I also have a cup of tea after breakfast, then do the above routine. Last year, I lost my job after 33 yrs. with same law firm as a legal secretary, and approx. 40 years in the same stressful environment. Then I lost my condo this Spring, and it's finally nearing the end of a short sale, so I'm living in an apartment after 20 years in a condo. Thank God I turned 62 last year so I'm on Social Security (but receiving a smaller amount having retired at 62) plus a small distribution of what's left of my 401(k) after the economic melt down. What a time to be forced to retire and not even be able to work part-time because of severe back pain for which I'm on pain medication since the failed surgery. I've always paid bills on time and had excellent credit, so this was not something I wanted to do but had no choice. Honestly, the last four years have been torture, and I can only pray I don't live longer than I have money to pay my bills, and the way things are going with my body and nutrition, that will probably happen with any luck at all. Sorry to sound so negative, but I have been through the ringer, not only with tests.

[runningcrazy]

Unfortunately, i dont think i will be able to help you much, but i do have a few suggestions:

You said you drink tea every morning. Tea has caffeine which although is a stimulant for the bowels, it also dehydrates you, therefore making bowel movements harder to do.

Now I know that this would probably put you over the edge, but have you considered psyllium husk? It is gluten free. Mix 1 tsp in a glass of water and drink immediatley, as it turns to sludge quickly. 1/3 cup of psyllium husk has 70 grams of fiber, so ease into it, maybe 1 tsp for 3 days, then move to 1 1/2 or 2. But if it bloats you up or makes it worse, do stop.

Taking dulcolax every night is probably making your problem worse. Over time bowel stimulant laxatives wear out the bowels making them stop working and become "lazy bowel syndrome" dont go off of it cold turkey or you'll probably not move anything at all. Instead maybe take one pill and a tablespoon of olive oil to lubricate the intestines. Do this for maybe a week. Next take 1tsp of psyllium husk and olive oil when you would normally take dulcolax. Drink a lot of water throughout the day, just not at meals.

Im only thirteen with many problems of my stomach and looking for an accurate diagnosis, and i know that every time i eat oatmeal i also bloat a bunch!

One thing we love to do is make smoothies, they are great for anytime of the day. Just take your favorite berries, a banana, some ice, and blend it up. Make a lot, and drink lots as it has a lot of fiber and should help elevate the amount of calories your eating.

[peacebwu]

Hi - after reading your note, just thought I would give you somewhat insight on what I have decided to do. No, I have not had the serious life problems you have had. But, I did have serious bleeding and diarreha for many years (close to death) and went thru many, many different tests (the usual). Still I'm at a point where one dr. will say Celiac and the other would say food allergeries! (this is over a 10 year period at the very least). This week, I again had a food allergery test along w/Celiac panel blood test. Same oh same oh, yes maybe.....no maybe...... I too have extreme stress in my life (not finanical, but very, very serious family situations that cannot be fixed w/money)!

I have come to the point my favorite saying are: "what is...is"....and this too (no matter what) will pass! The same for you!

Instead of going completely gluten-free I have decided to let my body tell me what I eat, depending how I feel and the stool situation. If I go completely gluten-free free I have problems w/pain, consitpation (very bad). I have gradually added somethings in my daily diet: This is what I eat: Morning 1-1/2 c coffee w/non dairy creamer and I make cornbread (jiffy) yes I know it has a little wheat. I have a small piece (plain) one small package will last me a week. At noon, I will have a corn tostito w/packaged thin lunchmeat turkey/han and melon, grapes, OR general foods Corn Chex and Rice Chex combined (must be combined or consitpated) w/a banana sliced, blackberries, etc. w/unsweetened almond milk Every night I have a weight w. Smart Balance stuffed turkeky t.v. dinner (I disgard the dressing) and add more fresh carrots and green beans. Most days I will have a little barbque meat (steak, ground sirlion) about a size of a playing card w/ the t.v. dinner to get protein. I have green tea (passion fruit) and depending how my day went I even might have a store bought oat meal cookie. The days I don't have the cereal for lunch, I have a small mixed bowl in the evening (no fruit or just a little blackberries) to make sure I have fiber for the morning stool. I drink water all day long, I believe it helps everything in our bodies.

If I have a second stool that is loose I take Lonnox (99% of the time it stops) if not I can take up to 4 a day. For stress, I take xanax .50 I can take up to 3 a day if needed. I use in the morning after my stool, and usually at night before bed to stop thinking about the "what if's"......I believe sometimes life does become overwelming....and the health problems become much worse, yes they do. Try your best to get thru today.......if some food agrees w/u stick w/it. Try to add a little as others have suggested....but I'm not looking for variety....personally I just want to feel good! If I do feel better regardless if it gluten-free or not, I will eat it. I know this is not officially correct w/the medical group, but let's be honest.....in most cases.....yes most.....we all just have gotten a run around or a "guss what you have" depending upon the dr. this last one told me if everyone was tested most people would test positive if not Celiac if would be food! (who knows)! I wish you well....believe me you are not alone.....try YOUR BEST to just plain feel good. It's hard but if you try to make some decisions on how your body feels after you eat something, go w/it!

[still coping]

Thank you all so very much for taking time to respond. I truly appreciate your thoughtful suggestions. I will try some of these things and let you know the results. Unfortunately, some things I know cause constipation in my body, like bananas. And as I can't drink anything cold, I'm afraid the smoothies (though I used to love them) are no longer an option for me as it causes my stomach to go into spasms and pain, just like the gluten/casein/soy reaction.

Also, I'm afraid to go backwards and add back in any gluten/casein/soy, as I truly know I have this Celiac disease; if I ingest the slightest amount, I have nearly instant extreme pain, spasms, bloating and gas that can last for days. When I first began avoiding these things (and was only 80% strict), when I did ingest any of these things I had a horrendous combined reaction of nausea, feeling dizzy and faint like I was about to pass out, and felt as though I would throw up -- all at the same time, and I was still working then. I also would get so stressed out (most often from something that actually to my mind wasn't stressful at all, but my intestines perceived it as stressful) that my stomach would start twisting to the point I would be bent over trying to breathe to stop the pain! It was truly insane and could last hours. So I don't want to go back to that, even if it meant further testing just to get a true positive reaction. That's the reason I know I've "triggered" this disease with the (failed) lumbar surgery; before that, I could and did eat nearly anything and everything. Also, it seems senseless to test any further mainly based on so many responses on this forum. There is no "fix" to celiac disease other than eating correctly, so I think I should just not make myself crazy over further diagnosis, b/c I know this is what's going on with me based on my reaction to these foods. If I do decide to test further, I'll update my post here to let you know.

I may add back in organic chicken and eggs as my nutritionist suggested for protein, in addition to the fish I can eat as it's mushy. Btw, the reason I can eat more than one item for breakfast (gluten-free corn flakes, almond milk, blueberries) is that everything that can pass through (or not pass through) my body is based on its CONSISTENCY. My breakfast is pure mush, as opposed to trying to eat a dinner of fish AND broccolli, as the latter has fiber even though the fish is mushy. I hope this makes sense to anyone following this string, and again, I truly appreciate all your suggestions. God bless and take good care of yourselves.

[still coping]

Thank you all so very much for taking time to respond. I truly appreciate your thoughtful suggestions. I will try some of these things and let you know the results. Unfortunately, some things I know cause constipation in my body, like bananas. And as I can't drink anything cold, I'm afraid the smoothies (though I used to love them) are no longer an option for me as it causes my stomach to go into spasms and pain, just like the gluten/casein/soy reaction.

Also, I'm afraid to go backwards and add back in any gluten/casein/soy, as I truly know I have this Celiac disease; if I ingest the slightest amount, I have nearly instant extreme pain, spasms, bloating and gas that can last for days. When I first began avoiding these things (and was only 80% strict), when I did ingest any of these things I had a horrendous combined reaction of nausea, feeling dizzy and faint like I was about to pass out, and felt as though I would throw up -- all at the same time, and I was still working then. I also would get so stressed out (most often from something that actually to my mind wasn't stressful at all, but my intestines perceived it as stressful) that my stomach would start twisting to the point I would be bent over trying to breathe to stop the pain! It was truly insane and could last hours. So I don't want to go back to that, even if it meant further testing just to get a true positive reaction. That's the reason I know I've "triggered" this disease with the (failed) lumbar surgery; before that, I could and did eat nearly anything and everything. Also, it seems senseless to test any further mainly based on so many responses on this forum. There is no "fix" to celiac disease other than eating correctly, so I think I should just not make myself crazy over further diagnosis, b/c I know this is what's going on with me based on my reaction to these foods. If I do decide to test further, I'll update my post here to let you know.

I may add back in organic chicken and eggs as my nutritionist suggested for protein, in addition to the fish I can eat as it's mushy. Btw, the reason I can eat more than one item for breakfast (gluten-free corn flakes, almond milk, blueberries) is that everything that can pass through (or not pass through) my body is based on its CONSISTENCY. My breakfast is pure mush, as opposed to trying to eat a dinner of fish AND broccolli, as the latter has fiber even though the fish is mushy. My body just can't handle more than one type of food at a time or things get bogged down and I'm constipated. Also, I'm taking the Dulcolax stool softener at night, not the Dulcolax laxative. I hope this makes sense to anyone following this string, and again, I truly appreciate all your suggestions. God bless and take good care of yourselves and keep fighting to stay well and healthy!

[Takala]

Two things.

One, if you are diagnosed celiac or gluten intolerant, or , if you KNOW you are gluten intolerant, you can not eat wheat, rye, barley, or things made of them. period. end of story.

Two. Whoever told the original poster not to drink water with meals ought to be taken out to the back forty and left there to rot. What rubbish.

DRINK WATER OR YOUR GUTS DON'T WORK. drink water. 6 to 8 glasses a day. Nice, lukewarm, room temperature water.

Okay, a third thing. Laxatives daily over time mess up your gut. Also, pain meds that are narcotic based are notorious for this.

Try magnesium maleate supplements, gluten free, instead. If you would take a magnesium supplement and a spoon of olive oil at bedtime you should loosen up.

Multivitamin. B complex. Calcium citrate and Vit D . Magnesium. If you have celiac you have to supplement to overcome the nutritional deficiencies caused by the gut lining damage.

You don't have any good fat in your diet. Get it in there with some water and magnesium, and things ought to start moving.

NO IODIZED SALT ? HOW do you think your body is supposed to function without it?

Have you tried apple cider vinegar, a dash in a glass of water ?

You could be a spondy with the back pain and other symptoms, you can, if you stick to a gluten free diet, and maybe get it in balance, add supplements, get the back pain to diminish quite a bit.

I am truly sorry for the stress in your life, and I hope you manage to find a path to feeling better.

[ang1e0251]

My standard breakfast is gluten-free corn flakes from Mother's with almond milk and fresh blueberries (my one splurge), then it's catch-as-catch-can the remainder of the day.

I would say while you are healing, to avoid all alternate grains except pure ones like cereal which you say you cannot tolerate. So no grains for now.

Because of the oatmeal controversy, I don't eat it any more, but also because it's literally like glue, and the same for any type of rice -- because of its consistency, it clogs my system up completely for days! I've tried and tried this, and have finally given up, so I assume any warm cereal would have the same effect on my body -- like glue

I would agree not to do oatmeal, I don't either but eliminating rice is a mistake. That said you know your body best. I eat rice sparingly although I do love it. I do better with very low carb in grains. Never assume, you are trying to wean your body off laxatives so you must find nourishment! Never exclude a food through assumption.

Coconut milk or coconut water is okay, though I'm not fond of the taste as it's so rich.

You are in desperate need of rich. Your body is starving and needs dietary fat to live. Dietary fat feeds your muscles especially that most important muscle, your heart. Anorexic's heart muscles are used up because their bodies will search out nutrition wherever it can find it. Don't fall into that trap, learn to eat rich, dietary fat. Add coconut milk to everything you can.

My nutritionist asked me to not drink water (or any drink) with meals as it would destroy whatever enzymes might be at work, so if I eat something dry it tends to clog up my system as there is no fluid in the mix to make it flow more easily through my body.

Fine, if you agree with this theory, then don't drink with meals. But your body must have fluids to live and function, especially your digestive functions. Do you water your plants? Of course, because plants need water to live. You do to.

My acupuncturist told me not to drink anything cold, as my stomach would go into spasms, and he's absolutely correct!

I'm not asking you to drink cold drinks. Drink them any temp that agrees with you but you do need fluids and lots of them!

I'm very sensitive to salt having done w/o it the past four years. (I've never liked salt as my mother would over-salt my eggs as a child.

You do not need to oversalt anything but the body must have salt to live. You need a small amount and find what's comfortable. Does your nutritionist know you eat no salt?

I also have a strong reaction to trying to eat cream of rice, as she would make cream of wheat during school weekday mornings, alternating w/oatmeal, but would make me drink the cream of wheat from a glass, as she was in a hurry to get me to school and her and my father to work.)

We all have reactions from childhood. I don't care for the texture of oatmeal but if my life depended on it for nourishment, you bet I would find a way I could tolerate it.

Thankfully, they had a fruit/produce store which I grew up working in, so ate plenty of all types of fruits/veggies growing up and love most of them. It's a good thing, because it's practically all I can eat!

These are great for you but not enough to sustain life.

The very thought of cream of rice or warm cereal makes me gag with memories of trying to drink cream of wheat w/lumps as a child. Nuts, huh?

Not nuts, but you must be braver if you want to recover. My husband claimed there were certain foods he "could not" eat when we married. I hid pureed carrots in stews and tofu under the pizza sauce. He got his nutrition without even knowing it. Now that he is more mature he will try most anything and surprises himself with what he likes. If you don't like how it looks, tastes or smells, hide it in another food you do like. You really need the food.

As for beef broth, every time I consume anything w/salt,

Who says you have to prepare it with a lot of salt? Make it anyway you like.

or even spray one spritz of Organiclean (fruit/vegetable wash to remove pesticides/chemicals), I end up w/splitting headache and have to take Excedrin which I don't want to do before it damages my stomach further and I start bleeding.

I agree with you that your chemical cleaners are probably a bad source of a headache.

Trust me, I've tried everything over the past four years that I can think of, and so end up pretty much w/breakfast noted above, then eat plain fruit in evening when craving sweets and for lunch, and steamed veggies for dinner. (I can't eat more than one thing or even veggie at a time, as my body just doesn't break it down to metabolize it let alone retain any nutrients.)

That's just plain not enough food. Have you tried baby food? Since it is pureed it may digest better for you. Or you can puree your own food. Also make sure you are chewing it well even if it's a pureed food, the digestive enzymes in your mouth help your intestines with the work.

Or I'll have a sweet potato, or asparagus, or broccolli. Yes, I can eat avocado by itself, but if I try to even make a small salad -- if I add lettuce, little cubed beets, petite peas (I love the latter two veggies), avocado and a little cucumber -- I'm bloated and clogged up for days!

So just eat it by itself. It is high in dietary fat that you need.

(Intuitively, I didn't even try avocado or salad until this past year.) I've tried this repeatedly, as with rice or warm cereal, the reaction is the same. It's too much for my intestines to handle more than just one item at a time or something with the consistency of glue. I know it sounds crazy, but that's what I'm dealing with for four years.

It's terrible to be in pain but you may need to just eat a couple of spoonfuls every 1/2 hour or so.

My nutritionist kept telling me to try to eat more, a little chicken, and one or two veggies for dinner, and though I love her to death, honestly, I got tired of paying her to tell me the same thing over and over even though I kept telling her the same results I'd have, it's like she wasn't hearing me.

She's just trying to see you nourished. Maybe the baby food meats would work for your system if diluted with broth.

I also can eat nuts, but not peanuts. So I keep Lara bars and Trio bars (both are gluten-free/cf/sf) in my car when I'm running errands and am starved. But even with these, if I consume more than one, it's too much, too heavy consistency and dry, and it too will block me up.

Lara bars are very filling. I usually have to have a lot of water when I eat one. If you can eat one of those, you might be able to eat other foods like them.

I literally go into Whole Foods or the regular supermarket, walk the aisles and cry! I'm so hungry all the time. Every time I've tried to eat out, even after questioning people who don't care let alone understand so simply say whatever I question is okay, I get sick.

In your condition, I would not eat out at all.

My nutritionist's theory was that the more I could get into my body, hopefully something would be metabolized, but I just can't eat that much w/o pain on my left side when everything finally reaches the end of the road and simply piles up and then doesn't move. I have no chance in the world of even having a tiny bowel movement if I don't take two Dulcolax every night, and that's not a guaranty.

If you get enough magnesium, it will help the constipation. I had to build up to about 650 mg's.

My acupuncturist has me do round circles of massage on my stomach with my fist while lying down, then put a heating pad on my stomach for 10-15 min. after every meal, and sometimes that helps. I also have a cup of tea after breakfast, then do the above routine.

Makes sense, make sure you're adding coconut milk to the tea.

Last year, I lost my job after 33 yrs. with same law firm as a legal secretary, and approx. 40 years in the same stressful environment. Then I lost my condo this Spring, and it's finally nearing the end of a short sale, so I'm living in an apartment after 20 years in a condo. Thank God I turned 62 last year so I'm on Social Security (but receiving a smaller amount having retired at 62) plus a small distribution of what's left of my 401(k) after the economic melt down. What a time to be forced to retire and not even be able to work part-time because of severe back pain for which I'm on pain medication since the failed surgery. I've always paid bills on time and had excellent credit, so this was not something I wanted to do but had no choice. Honestly, the last four years have been torture, and I can only pray I don't live longer than I have money to pay my bills, and the way things are going with my body and nutrition, that will probably happen with any luck at all. Sorry to sound so negative, but I have been through the ringer, not only with tests.

You have had a hard time. I'm sorry but I'm not giving up on you. I think you can slowly add to your nutrition. It takes a long time to heal but it usually is possible. You must stay open to the possibilities and I hope others who also have had an equally hard time will write in for you.

[GFinDC]

Hi,

Sounds like you are having all kinds of fun! I have been feeling pretty lousy myself this year, and just about a week ago figured out that it is my low thyroid that is causing the problems. Since I have got some thyroid supplements I am feeling much better. My digestion has improved lots since then. So far this year I cut out carrots (which really surprised me that I had a reaction to them), coffee and tea. Just stating this to suggest that there can be multiple foods causing problems.

Your symptoms sound like they could be diverticulitis related? Just a thought, I don't think it is really an unusual condition. I suggest you look into doing an elimination diet if you haven't tried that yet. They can be very helpful for finding troublesome foods, but also for identifying foods that are safe to eat.

The big food culprits around here seem to be dairy, soy, corn, nightshades, and msg. I really think a whole foods diet works well myself. I make about 90% or more of my foods from whole ingredients now.

Can you eat canned salmon? Sometimes I make guacamole and add canned salmon to it for extra protein. Tastes ok too.

If you want to try more salt but not go to far with it, you could look for a salt substitute. Morton Lite salt in the grocery store is lower sodium than regular salt and has some potassium in it. If you are totally off salt it's good to get some iodine in your vitamin pills.

Welcome and I hope you find some relief soon!

[peacebwu]

Hi,

Sounds like you are having all kinds of fun! I have been feeling pretty lousy myself this year, and just about a week ago figured out that it is my low thyroid that is causing the problems. Since I have got some thyroid supplements I am feeling much better. My digestion has improved lots since then. So far this year I cut out carrots (which really surprised me that I had a reaction to them), coffee and tea. Just stating this to suggest that there can be multiple foods causing problems.

Your symptoms sound like they could be diverticulitis related? Just a thought, I don't think it is really an unusual condition. I suggest you look into doing an elimination diet if you haven't tried that yet. They can be very helpful for finding troublesome foods, but also for identifying foods that are safe to eat.

The big food culprits around here seem to be dairy, soy, corn, nightshades, and msg. I really think a whole foods diet works well myself. I make about 90% or more of my foods from whole ingredients now.

Can you eat canned salmon? Sometimes I make guacamole and add canned salmon to it for extra protein. Tastes ok too.

If you want to try more salt but not go to far with it, you could look for a salt substitute. Morton Lite salt in the grocery store is lower sodium than regular salt and has some potassium in it. If you are totally off salt it's good to get some iodine in your vitamin pills.

Welcome and I hope you find some relief soon!

[peacebwu]

Great advice for all of us trying to figure out what's going on and to live w/it!

Dumb question.....what is nightshades?????? Alone w/the food mentoned, my dr. also said that sugar is quite bad. It causes yeast infection in the colan and disgestive tract! Oh well, another add to the list! Really thanks this is a good tread .!

[pchick]

Two. Whoever told the original poster not to drink water with meals ought to be taken out to the back forty and left there to rot. What rubbish.

DRINK WATER OR YOUR GUTS DON'T WORK. drink water. 6 to 8 glasses a day. Nice, lukewarm, room temperature water.

My ND told me the exact same thing: no water during meals or 30 mins before or after. Your body needs the digestive enzymes to break down the food and get nutrients. If you drink water you rinse those enzymes out before digestion, and more nutrients are lost. But it IS TRUE you DO need your water ~ even tho I don't drink with meals, I still try to get 96oz a day.

Nightshade veggies are: potatoes, tomatoes, peppers, eggplant and okra ~ I have to avoid these too otherwise my joints hurt A LOT.

ND's are very different than MD's and I find they have much more REAL experience with dealing with everyday nutrition to help with this.

[still coping]

My standard breakfast is gluten-free corn flakes from Mother's with almond milk and fresh blueberries (my one splurge), then it's catch-as-catch-can the remainder of the day.

I would say while you are healing, to avoid all alternate grains except pure ones like cereal which you say you cannot tolerate. So no grains for now.

Because of the oatmeal controversy, I don't eat it any more, but also because it's literally like glue, and the same for any type of rice -- because of its consistency, it clogs my system up completely for days! I've tried and tried this, and have finally given up, so I assume any warm cereal would have the same effect on my body -- like glue

I would agree not to do oatmeal, I don't either but eliminating rice is a mistake. That said you know your body best. I eat rice sparingly although I do love it. I do better with very low carb in grains. Never assume, you are trying to wean your body off laxatives so you must find nourishment! Never exclude a food through assumption.

Coconut milk or coconut water is okay, though I'm not fond of the taste as it's so rich.

You are in desperate need of rich. Your body is starving and needs dietary fat to live. Dietary fat feeds your muscles especially that most important muscle, your heart. Anorexic's heart muscles are used up because their bodies will search out nutrition wherever it can find it. Don't fall into that trap, learn to eat rich, dietary fat. Add coconut milk to everything you can.

My nutritionist asked me to not drink water (or any drink) with meals as it would destroy whatever enzymes might be at work, so if I eat something dry it tends to clog up my system as there is no fluid in the mix to make it flow more easily through my body.

Fine, if you agree with this theory, then don't drink with meals. But your body must have fluids to live and function, especially your digestive functions. Do you water your plants? Of course, because plants need water to live. You do to.

My acupuncturist told me not to drink anything cold, as my stomach would go into spasms, and he's absolutely correct!

I'm not asking you to drink cold drinks. Drink them any temp that agrees with you but you do need fluids and lots of them!

I'm very sensitive to salt having done w/o it the past four years. (I've never liked salt as my mother would over-salt my eggs as a child.

You do not need to oversalt anything but the body must have salt to live. You need a small amount and find what's comfortable. Does your nutritionist know you eat no salt?

I also have a strong reaction to trying to eat cream of rice, as she would make cream of wheat during school weekday mornings, alternating w/oatmeal, but would make me drink the cream of wheat from a glass, as she was in a hurry to get me to school and her and my father to work.)

We all have reactions from childhood. I don't care for the texture of oatmeal but if my life depended on it for nourishment, you bet I would find a way I could tolerate it.

Thankfully, they had a fruit/produce store which I grew up working in, so ate plenty of all types of fruits/veggies growing up and love most of them. It's a good thing, because it's practically all I can eat!

These are great for you but not enough to sustain life.

The very thought of cream of rice or warm cereal makes me gag with memories of trying to drink cream of wheat w/lumps as a child. Nuts, huh?

Not nuts, but you must be braver if you want to recover. My husband claimed there were certain foods he "could not" eat when we married. I hid pureed carrots in stews and tofu under the pizza sauce. He got his nutrition without even knowing it. Now that he is more mature he will try most anything and surprises himself with what he likes. If you don't like how it looks, tastes or smells, hide it in another food you do like. You really need the food.

As for beef broth, every time I consume anything w/salt,

Who says you have to prepare it with a lot of salt? Make it anyway you like.

or even spray one spritz of Organiclean (fruit/vegetable wash to remove pesticides/chemicals), I end up w/splitting headache and have to take Excedrin which I don't want to do before it damages my stomach further and I start bleeding.

I agree with you that your chemical cleaners are probably a bad source of a headache.

Trust me, I've tried everything over the past four years that I can think of, and so end up pretty much w/breakfast noted above, then eat plain fruit in evening when craving sweets and for lunch, and steamed veggies for dinner. (I can't eat more than one thing or even veggie at a time, as my body just doesn't break it down to metabolize it let alone retain any nutrients.)

That's just plain not enough food. Have you tried baby food? Since it is pureed it may digest better for you. Or you can puree your own food. Also make sure you are chewing it well even if it's a pureed food, the digestive enzymes in your mouth help your intestines with the work.

Or I'll have a sweet potato, or asparagus, or broccolli. Yes, I can eat avocado by itself, but if I try to even make a small salad -- if I add lettuce, little cubed beets, petite peas (I love the latter two veggies), avocado and a little cucumber -- I'm bloated and clogged up for days!

So just eat it by itself. It is high in dietary fat that you need.

(Intuitively, I didn't even try avocado or salad until this past year.) I've tried this repeatedly, as with rice or warm cereal, the reaction is the same. It's too much for my intestines to handle more than just one item at a time or something with the consistency of glue. I know it sounds crazy, but that's what I'm dealing with for four years.

It's terrible to be in pain but you may need to just eat a couple of spoonfuls every 1/2 hour or so.

My nutritionist kept telling me to try to eat more, a little chicken, and one or two veggies for dinner, and though I love her to death, honestly, I got tired of paying her to tell me the same thing over and over even though I kept telling her the same results I'd have, it's like she wasn't hearing me.

She's just trying to see you nourished. Maybe the baby food meats would work for your system if diluted with broth.

I also can eat nuts, but not peanuts. So I keep Lara bars and Trio bars (both are gluten-free/cf/sf) in my car when I'm running errands and am starved. But even with these, if I consume more than one, it's too much, too heavy consistency and dry, and it too will block me up.

Lara bars are very filling. I usually have to have a lot of water when I eat one. If you can eat one of those, you might be able to eat other foods like them.

I literally go into Whole Foods or the regular supermarket, walk the aisles and cry! I'm so hungry all the time. Every time I've tried to eat out, even after questioning people who don't care let alone understand so simply say whatever I question is okay, I get sick.

In your condition, I would not eat out at all.

My nutritionist's theory was that the more I could get into my body, hopefully something would be metabolized, but I just can't eat that much w/o pain on my left side when everything finally reaches the end of the road and simply piles up and then doesn't move. I have no chance in the world of even having a tiny bowel movement if I don't take two Dulcolax every night, and that's not a guaranty.

If you get enough magnesium, it will help the constipation. I had to build up to about 650 mg's.

My acupuncturist has me do round circles of massage on my stomach with my fist while lying down, then put a heating pad on my stomach for 10-15 min. after every meal, and sometimes that helps. I also have a cup of tea after breakfast, then do the above routine.

Makes sense, make sure you're adding coconut milk to the tea.

Last year, I lost my job after 33 yrs. with same law firm as a legal secretary, and approx. 40 years in the same stressful environment. Then I lost my condo this Spring, and it's finally nearing the end of a short sale, so I'm living in an apartment after 20 years in a condo. Thank God I turned 62 last year so I'm on Social Security (but receiving a smaller amount having retired at 62) plus a small distribution of what's left of my 401(k) after the economic melt down. What a time to be forced to retire and not even be able to work part-time because of severe back pain for which I'm on pain medication since the failed surgery. I've always paid bills on time and had excellent credit, so this was not something I wanted to do but had no choice. Honestly, the last four years have been torture, and I can only pray I don't live longer than I have money to pay my bills, and the way things are going with my body and nutrition, that will probably happen with any luck at all. Sorry to sound so negative, but I have been through the ringer, not only with tests.

You have had a hard time. I'm sorry but I'm not giving up on you. I think you can slowly add to your nutrition. It takes a long time to heal but it usually is possible. You must stay open to the possibilities and I hope others who also have had an equally hard time will write in for you.

********************************************************************************

Fri., 8/7/09 - God bless you all for responding! I checked back today as I'm feeling beaten down and hopeless, and feel so blessed for yours and others' responses. I've got to go grocery shopping tomorrow, and will take all of your responses into account and make some adjustments and additions to my list and try your suggestions. Again, may God bless you all for taking so much of your precious time to respond in such detail! Thank you all so very much, and I will keep you posted with my progress. Take good care of yourselves, and give your bodies the love and nourishment they so desperately need.

[nasalady]

Hi - after reading your note, just thought I would give you somewhat insight on what I have decided to do. No, I have not had the serious life problems you have had. But, I did have serious bleeding and diarreha for many years (close to death) and went thru many, many different tests (the usual). Still I'm at a point where one dr. will say Celiac and the other would say food allergeries! (this is over a 10 year period at the very least). This week, I again had a food allergery test along w/Celiac panel blood test. Same oh same oh, yes maybe.....no maybe...... I too have extreme stress in my life (not finanical, but very, very serious family situations that cannot be fixed w/money)!

I have come to the point my favorite saying are: "what is...is"....and this too (no matter what) will pass! The same for you!

Instead of going completely gluten-free I have decided to let my body tell me what I eat, depending how I feel and the stool situation. If I go completely gluten-free free I have problems w/pain, consitpation (very bad). I have gradually added somethings in my daily diet: This is what I eat: Morning 1-1/2 c coffee w/non dairy creamer and I make cornbread (jiffy) yes I know it has a little wheat. I have a small piece (plain) one small package will last me a week. At noon, I will have a corn tostito w/packaged thin lunchmeat turkey/han and melon, grapes, OR general foods Corn Chex and Rice Chex combined (must be combined or consitpated) w/a banana sliced, blackberries, etc. w/unsweetened almond milk Every night I have a weight w. Smart Balance stuffed turkeky t.v. dinner (I disgard the dressing) and add more fresh carrots and green beans. Most days I will have a little barbque meat (steak, ground sirlion) about a size of a playing card w/ the t.v. dinner to get protein. I have green tea (passion fruit) and depending how my day went I even might have a store bought oat meal cookie. The days I don't have the cereal for lunch, I have a small mixed bowl in the evening (no fruit or just a little blackberries) to make sure I have fiber for the morning stool. I drink water all day long, I believe it helps everything in our bodies.

If I have a second stool that is loose I take Lonnox (99% of the time it stops) if not I can take up to 4 a day. For stress, I take xanax .50 I can take up to 3 a day if needed. I use in the morning after my stool, and usually at night before bed to stop thinking about the "what if's"......I believe sometimes life does become overwelming....and the health problems become much worse, yes they do. Try your best to get thru today.......if some food agrees w/u stick w/it. Try to add a little as others have suggested....but I'm not looking for variety....personally I just want to feel good! If I do feel better regardless if it gluten-free or not, I will eat it. I know this is not officially correct w/the medical group, but let's be honest.....in most cases.....yes most.....we all just have gotten a run around or a "guss what you have" depending upon the dr. this last one told me if everyone was tested most people would test positive if not Celiac if would be food! (who knows)! I wish you well....believe me you are not alone.....try YOUR BEST to just plain feel good. It's hard but if you try to make some decisions on how your body feels after you eat something, go w/it!

As others have said before....if you *do* have celiac disease, and you continue to eat gluten, even in "small" amounts, you are allowing the damage to your intestines to continue, and you are increasing your chances of developing serious complications, including intestinal cancer.

Unless you go completely gluten free, you will never know if the gluten free diet works for you. You can add fiber to help with the constipation (psyllium husks, flax seed, etc.).

Just a thought.

[still coping]

Good evening all. I've just logged in to thoroughly go through all your suggestions, and make my grocery list for tomorrow. Couple of thoughts/questions, please.

First, what type/brand of "broth" or "beef broth" do you suggest? Like bullion cubes, or in a can, or what? As "beef" itself absolutely will not go through my body since my intestines have been twisted from the failed lumbar surgery, I see no sense in spending a ton of money to make beef to throw it out and keep just the broth! This whole gluten/dairy/soy nightmare is soooo expensive as it is, adding expensive meats to throw out just to keep the broth is way beyond my income. (I mentioned fear of too much salt because I was thinking you meant canned, or even bullion cubes, so I'm not sure what you mean as far as broth.) Please kindly advise.

Second, baby food -- what brand? Are they all gluten free? I know, I know, as usual, you're going to tell me to read the ingredients. I do this with literally EVERYTHING I pick up before I purchase, and 99.9% goes back on the shelf as there is virtually ALWAYS something in it that makes it contain gluten, particularly "natural flavoring" of some unknown source which alone means it's filled w/gluten. Sorry, but I'm once again just trying to save money, as I'm throwing so much out, much more than I'm able to eat, for one reason or another.

My desire is to take a daily packet of gluten-free, pure powder (not rock hard tablets that never break down) expensive vitamins, but b/c of inabiity to eat much, I usually can't fit this in, as there's not enough food to mix it with as it will just block up my body with constipation. However, every day I do religiously take: Symbiotics Colostrum Plus for GI tract health and immunity (haven't had one cold, etc. for years). (I know it is made from "bovine milk," but my nutritionist says "for now" take it, I assume b/c it has more value b/c of my lack of proper nutrition, than it is harmful to my body, even though it is dairy, so I'm listening to her and not taking it out of my routine. I did stop taking for 1 month as a test for completely deleting dairy, and found my constipation problem grew even worse, so that made my decision pretty easy and I added it back into my routine.) I also take daily: Suprema Dophilus (only item purchased from nutritionist) which is a probiotic blend (gluten-free); Omega-3 blend of EPA-DHA fish oil and flaxseed oil (pure, gluten-free and mercury/contaminant free); Nordic Naturals Arctic Cod Liver Oil soft gels -- so I am getting oils in the form of omega-3 and cod liver oil daily (both were the suggestion of my nutritionist (to help constipation issue), as well as the Suprema Dophilus probiotic); Calcium-Magnesium Intensive Care (gluten-free); and Glucosamine w/Chondroitin (gluten-free). I take the calcium for bones/osteoporosis/dental health, as I've had a ton of dental work in the last 2 years due to celiac disease. I also take 2 Slow-Fe (iron) tablets daily, as I'm anemic due to celiac disease, and have been advised by hemotologist to take this dosage of iron. (Initially tried prescription brands of iron as hematologist suggested, but had an allergic reaction, or was horrendously nauseated, so had to switch to Slow-Fe, which is over the counter.) So you can see, it's difficult to add the packet of regular daily vitamins, as I'm taking all these other vitamins for specific reasons. I now know I MUST take the regular vitamins after reading all of your suggestions, as I'm not getting the basics, particularly Vitamin B complex. Message received, loud and clear!

Finally, also please understand that I am and have been for at least a month or more 100% gluten-free, dairy-free, and soy-free. In addition, I'm not sure why everyone keeps telling me not to eat anything with wheat, rye or barley. I fully realize this is the bottom-line basic definition of gluten, (along w/a million other things), so it has not been in my body for quite some time now. (I'm not an expert on gluten, but I have done my on-line research and read many books since 2/07 in an attempt to educate myself.) Honestly, the only "grain" I eat is gluten-free Nature's Path corn flakes, w/almond milk and fresh blueberries (my standard breakfast since 2/07 diagnosis). So are you suggesting that I also delete gluten-free corn flakes from my breakfast, or just try rotating it with warm cereals, like cream of rice, or quinoa -- which I do promise to try. Please advise.

Once again, I sincerely appreciate everyone's replies and the time you've painstakingly taken to do so in such great detail. You've touched me deeply with your caring, thoughtful suggestions. I will make some major changes this coming week, and advise what happens. God bless, and have a peaceful, pain-free weekend!