I'm brand new on here.I'm a 44 year old almost 45 year old woman who has had a history of severe psychological and sometimes physical abuse from birth on by my mother until I was 20 and she died. I was the wscapegoat and victime to the extreme from the moment AI was born into a very sick destructive mother (and father also just not as bad and consistent as my mother) family and it's a very bad extreme complicated case.
When I was 29 bad pain statred on my left side off and on,so I went to my former internist about it.He thought it was some type of IBS and he prescribed a medication which did nothing. It can go away for months and it even went away for 2 years once. I went to a gastro intestinal doctor for the first time at age 32 and he too thought it was IBS and in 2007 I went back to this office and saw the only doctor left there in that practice and he also said he thought it was IBS he prescribed a medication that another internist after the other one I went to before , that disolves under the tongue and it did nothing either.
In early 2008 I went to another gastro intestinal doctor and he too thinks it's IBS and I only get the pain,and everything I have always read and heard about IBS is that it usually also causes constipation,bloating and diarrhea but I never have any of these. I have have a very weak bowel muscle for years that has gotten worse too and for the last 6 years or more I can't control my bowels,I have to literally run to a bathroom and I have had discusting accidents in my underwear! If I'm going for a long walk or a medium or long ride in a car I have eat very little and nothing really solid and take a Lomotil that I asked my second gastro doctor to prescribe. He also prescribed Bentyl 2 years ago and it actually really helps take the pain away unless it's very bad then it only helps somewhat but it's the only medication that helps.
This gastro Dr. presrcibed a CAT scan of my left side in the Spring of 2008 but I didn't have the iodine IV because I was afraid since I never have had it before and the technician didn't want to take a chance I could be allergic to it either she said it's like a Bee sting you don't know until it happens.So I just drank a fluid I forget what it's called that lights you uo,and the test came back normal.I just saw this gastro Dr.last month and I hadn't seen him for a year and I have shown him where my pain is and he has pressed in there and he told me last year that that is my intestines. But he said to me this recent visit that the pain could be gynecological and I said no I have had 2 transvaginal pelvic ultrasounds one in October 2006,and another in December 2008 for other non gastrointestinal reasons and they were fine.
It just goes to show that he's really just guessing that I have IBS and both gastro Dr.'s suggested I have a colonosocopy but I am way too afraid to be put to sleep and I asked both of these doctors if I could as my present internist suggested,be given a sedative to relax me but not put me to sleep,but they won't do it and my present gastro Dr.said it's too painful to do. My mother had some type of sapastic colon and her mother my grandmother had Chrohnes and coloitis for over 30 years and was often in the hospital because of it.
The pain usually lasts for 4 days straight and it even hurts to move my body and sometimes the pain lasts a week with no let up but as I said if it's not too bad the medicine really helps but mu condition is getting worse,it's occuring more often.It feels like there is pain in the lining of my intestines,bowel.
If anyone can let me know if they have had or knows anyone that has had IBS with just the pain and what to do about this condition,I really would appreciate it.
Have you been tested for Celiac disease? You should have those blood tests. Colonoscopy is surprisingly easy. The medications they gave me were just Demerol and Versed, and they took away all my worries and made me comfortable. It was not general anesthesia - in fact, doctors won't use general anesthesia for colonoscopy as it is too much sedation and they need you to tell them if there is any discomfort. You need to be checked with your family history.
Don't fret over this test - it's easy. If you are worried about the medications, just have it in the hospital instead of in the office so they will have help available if you need it. Get an upper endoscopy while you're at it so they can biopsy for celiac disease.
Thank you,but I really don't want to have the colonoscopy done. I have never heard of Celiac disease what exactly is it,it's causes and symtoms. And why would the Bentyl that my second gastro doctor prescribed for my pain tha comes and goes for what he thinks is IBS work, when the pain is medium to bad,it only reduces the pain if it's very bad, if I don't have some type of IBS?
You meet the Rome III criteria for IBS if your symptoms began at least 6 months ago, you have had abdominal pain or discomfort at least 3 days each month in the last 3 months, and at least two of the following statements are true:1
* The pain is relieved by having a bowel movement.
* The pain is linked to a change in how often you have a bowel movement.
* The pain is linked to a change in the appearance or consistency of your stool.
It's very likely to be IBS, but the colonoscopy is necessary to rule out other bowel issues. And, it's still possible that it's Celiac. Not all Celiac is easy to diagnose. I still haven't been diagnosed, even though I can see for myself that gluten is a problem and many in my family have gluten intolerance or Celiac. I finally had to ignore the GI and go with what I know is right and simply avoid gluten or suffer. The GI is dismissive about gluten intolerance just because the blood tests don't prove anything to him. That's his problem, since he isn't the one who suffers from eating gluten.
Colonoscopy will not diagnose Celiac. But, it can verify if there are other bowel issues. If the bowel has nothing obvious going on with it, they will call it IBS.
My pain off and on began in 1994 and pain as I said is the only symptom and 2 different gastro doctors both think it's IBS.Infact the second Dr.said he's pretty sure if I had a colonoscopy it would be normal.
If I eat too much raw ruffage I can get the pain,sometimes not.If I'm really upset about something sometimes it triggers it and other times not.I read on Wikipedia yesterday that Celiac disease has a risk for bowel cancer,and I know IBS doesn't.
I just read on Wikipedia a definition of Chronic Functional Abdominal Pain and it says that unlike with IBS there is just the pain with no changes in bowel habits with no known explaination.I don't know why neither of the gastro doctors I have seen even suggested this.
In the Spring of 2008 my present gastro doctor gave me a prescription to get a CAT scan of my left side but the technician didn't want to give me the iodine IV because I never had it before and she said it's like a Bee sting,you don't know if you are allergic until you get it.So I just drank a lot of Baruim to light me up,and they got a pretty good picture,and there wasn't anything abnormal.
The technician was correct if that's the contrasting dye she was talking about. That stuff almost killed my father when they used it for his heart.
Yes, I knew that Celiac carried a higher risk for bowel disease. It also has a higher risk for malabsorption and Rheumatoid Arthritis and Osteoporosis. Many people are trapped in the same dilemma I am with not knowing for sure if they actually have Celiac and being dismissed by the medical professionals. Like I said before, I have to do what I know is best for me, and that really does mean avoiding gluten. I know what my bowels are like if I cheat and I know what the eczema is like if I eat gluten. You are right about there being higher risks with Celiac. The tricky part is that Celiac isn't always straight forward and easy to diagnose. Yet, since it's possible to eat a healthy diet without gluten, my silly GI doesn't really have a legitimate reason for being so dismissive towards me about it. He is the only doctor I have who is dismissive about it, yet he is supposed to know that going gluten free can still be healthy.
A friend of mine thinks that it's possible that since he is an ultra conventional doctor that doesn't even lean towards the middle with what is called integrative medicine that he very likely thinks that living gluten free is somehow some kind of fad diet. Right, tell that to my bowels that feel better when I avoid gluten. I think my friend is right. The nephrologist I had short term had this same dismissive attitude. Thankfully, my kidneys are okay for now. I'll have to be sure that my friends bring me food from home if I'm ever in the hospital again. The hospital has almost nothing but high gluten foods on their menu. Disgusting really when one stops to think about all the times they tell us to eat better foods and then have a menu like that.
However, my neurologist is fully aware of Tyramine Intolerance and my PCP has seen the difference in me after I went gluten free. She knows very well what the eczema looked like at its worst, so my PCP knows that I'm right even if the GI is so dismissive about gluten intolerance. The only one with this peculiar dismissive attitude is the GI doctor. He's also the only one of my conventional doctors who is dismissive about integrative medicine. It just doesn't make any sense for him to have such an attitude when if I followed only his advice I would either be much sicker and in need of surgery or even possibly dead. I would also be far more overweight and I would have a much more difficult time with the migraine disorder and I would already have to be using high blood pressure medication. I don't know what some of these doctors have against integrative medicine or even figuring out food sensitivities through elimination diets when it's clear that integrating is just a common sense approach to medicine and uses what works best for the patient. This website does say that if you go through the elimination diet that you should be doing it under care of a naturopath. The website is correct, because too many people don't understand how to do it. And, a naturopath can help you figure out where you might need to consider making adjustments in the elimination diet before going to the next step.
Check out Tyramine Intolerance: http://www.whfoods.com/genpage.php?tname=faq&dbid=30
Thank you. But as I said,I could have the Chronic Functional Adominal Pain condition.Do you get constipation or diarrhea with your condition,because I don't. How old was your father when he got sick from the contrast,and did he ever have a problem eating sea foods like shrimp? Because I can eat that with no problems,and they say if you are sensitive to iodine you can't eat them.
Yes, mostly IBS-C. Naturally, there will be a few days here and there with the opposite problem, but usually it's not severe and is usually a relief, if you know what I mean.
Yes, you're correct about my father and sea foods such as shrimp. I, too, have problems with crustaceans. I don't know how old he was when the contrast dye for his congenital heart defect nearly killed him, but he couldn't have been very old, since I was still a little girl.
Yeah, Chronic Functional Abdominal Pain must be unbearable at times. For a long time I couldn't figure out why I was still having such chronic colon pain. It has only been recently when I finally figured out the connection to Tyramine Intolerance, IBS and migraine disorder. The three things go together. I wouldn't be surprised if the iodine issue was related to the Tyramine Intolerance. I have to look at that page again. I think it is also related. I'm not as acutely allergic as some people are, but there is no sense in risking it since the last couple of times I had anything with crustacean in it, my throat felt like I was trying to swallow a hard rubber ball. So much seafood actually makes me nauseous anyway, so there really isn't any legitimate reason to push my tolerance level and risk my health. A lot of it is related to sulfites, too, since a lot of seafood is sulfited right on the boats in the holds. I can't even eat seaweed, like the Nori that is used in sushi and sashimi. Much of that is vegetarian and not even involving any other seafood besides the Nori. I can't eat the Nori, though. I learned that the hard way. I was able to isolate the Nori as the culprit, so I know that one for sure. I had been eating it by itself and had an immediate reaction, so there was no question. Too bad, because it is otherwise healthy food and I do actually like it. There must be a higher iodine content in Nori, just like in crustaceans is all I can figure. That and/or sulfites, even though I was unaware of the sulfite issue at that time.
Other than the possibility of food sensitivities or other substances you take into your body in some manner, I'm at a loss as to what could be aggravating your condition. I do know what it's like to be in a lot of pain and not know what is causing it, though. I didn't know for a large part of my lifetime. Yet, I had these problems even as a kid. Long story there that I don't really need to relate. A lot of people with IBS and IBS/GERD can relate similar stories to fill a whole library. The only thing I know for sure is that for those of us with these conditions, food sensitivities do play a role.
Sorry I don't have any other information, but maybe what I said was helpful for someone else who wasn't aware of how many foods play a role in how the digestive tract responds. One can hope that what I said still helped someone else, even if I have no idea what else to suggest other than sensitivities to what one consumes. I really am sorry, because I know how bad it is to have chronic pain in the abdomen and not be able to resolve the pain.
THank you again. As I said two different gastro doctors think it's some type of IBS. Can you give me any ideas of a specific diet to avoid gluten and what type of bread do you buy without the gluten and can you find in a regular food store?
Gluten free doesn't have to be as difficult as everyone says it is. I'm not fond of the brown rice bread for sandwiches, but it works well as toast. I can't remember which brand it is, since I didn't buy it very many times. It will work, though. Brown rice bread tastes good, but it does tend to crumble. If you know that going in, you'll be just fine. It's still worth giving it a try. Be prepared to make smaller sandwiches than what you're used to, because the rice bread is also smaller, but that's a good thing, since it does tend to crumble. It does cost more than what you're used to paying, just so you know. I found this bread at two different grocery chains. I don't know if it's available at your Safeway store, though, since I don't shop there. Kroger and Town and Country Market chains do carry this bread. Sorry, I don't remember the brand name. It isn't a big brand name, but if your store carries it, someone working at the store should be able to find it.
Trader Joe's is a great source if you want to try brown rice tortillas. I liked those better, but they do still break easily. The reason bread and tortilla made without gluten breaks easily is because of the lack of gluten. If you can change how you think of tortillas and wraps, you can enjoy the rice tortillas and just use them to place a little bit of the filling on a portion of the tortilla and eating it more like a piece of open faced sandwich, you're more likely to enjoy the rice tortillas. They taste fine, but you do need to know that this is what happens. These tortillas are safe for Celiacs, because right on the packaging it says that the tortillas are made on equipment dedicated to being gluten free. The one good thing about these is that if you brush them with oil and sprinkle a bit of sea salt on them and bake them in the oven, they make great rice crisps. No preservatives or other weird ingredients like that involved, just rice, tapioca and water, your olive oil and sea salt that you added yourself, and that's it. It's important that you read labels and know what you're actually eating. A lot of people don't do this and end up surprised about what they're actually consuming.
I have found some gluten free baking recipes by simply searching for gluten free and Celiac baking in the Google search engine. Apparently, sorghum flour is used for a wheat substitute for some of these recipes. Corn meal is used in some of the recipes, too, but corn is a common food allergen and many with IBS and migraine issues can't tolerate corn meal in particular because the processing to make corn into flour uses a lot of sulfites. So, I would steer clear of corn meal and corn flour 'til you're sure that corn isn't a food sensitivity for you.
Many stores have a few shapes of brown rice pasta available. It's about $4.00/package at most commercial stores, but Trader Joe's has packages for about half of that price. Of all the gluten free substitutes, the pasta is by far the best option. I love rice cakes, too. Since I can't tolerate corn, I love snacking on rice cakes instead of popcorn. It's also good with nut butter on it, if you're able to tolerate that once in a while. Forget about soy nut butter and peanut butter 'til you're sure what your sensitivities are. Those are the ones most people have trouble with. I can only have almond butter occasionally. It's really good on rice cakes, though. Lundgren's rice cakes are the best and most nutritious of all the rice cakes I have seen on the market. Trader Joe's has a pretty good one that is about half the price, but it's kind of like eating air. Some people prefer that, though. It's all a matter of taste.
If you can trust your local bulk foods store (It greatly depends on the severity of the illness and sensitivities and on how well you can trust that there is no cross contamination with the gluten products), there are several things you can get that are wonderful grains to fill your gluten free needs. Quinoa (pronounced keen-wah) is a wonderful nutritious grain that is worth trying. It actually has a lot more protein than wheat does, just not gluten protein. It makes a great breakfast substitute for oatmeal. There are three colors of quinoa on the market: neutral color (available in boxes at Trader Joe's), black and red. It tastes wonderful.
Buckwheat comes in the natural form and it comes toasted. The toasted buckwheat is also called kasha. Buckwheat is NOT wheat. I'm not sure why the wheat word is part of the name, but it's an entirely different kind of seed. Some say it's not even a grain. Well, it's not from a plant that looks like grass, that's for certain.
Cooked properly, millet is wonderful. Yes, it's the same grain you give to your pet parakeet, but it is hulled and is intended for human consumption. It tastes very good. Another good one is amaranth. Use a bigger pot than you think you need, because it tends to boil over if you don't. It has an interesting nutty flavor. If you can manage to dry toast it, some of it will puff up like popcorn. Be careful, as it won't all pop before it burns.
There are many different kinds of rice. Don't waste your efforts with white rice, because it has nothing left nutritionally. When we have these health issues, we need as much whole nutrition as we can manage to get. There are at least two or three kinds of red rice varieties and about four to six different brown rice varieties. There is a black short grain rice called forbidden rice. I didn't like that one myself. There is also something called wild rice which isn't really a rice at all. It is just called that because it is cooked and eaten in the same manner as rice and it has a long grain like rice. However, it is actually a native water plant that grows here in North America that the First Nations people actually made use of. It has a wonderful and unique flavor. It is rather expensive, but you can get it at Trader Joe's for a more affordable price. There is also something available in the bulk foods that is a mixed blend of several kinds of rices that adds some of this wild rice to the mix that is more affordable. Just make sure that the kind you get is definitely just a mix of rices.
Beware of anything that is called orzo. It looks like rice, but it is NOT rice. I always knew this but I've come across people who learned this the hard way who said they really didn't know 'til they had a bad reaction to it. Orzo is simply another shape of pasta. Just don't be fooled by it. The same is true of couscous. People think couscous is a grain. Again, all couscous is is just another shape of pasta. If you like couscous, simply substitute quinoa or millet for the couscous in any recipe that calls for couscous. Unless someone is ultra picky, like someone I knew at one time, I can't imagine anyone having a problem just substituting millet or quinoa for couscous. Okay, ultra picky traditionalists might, but that's their problem. They don't suffer for eating gluten, so what do you care what someone like that thinks? As far as I'm concerned, they're the ones missing out, because there is a lot more variety available to eat if someone is willing to give it a try.
Give these alternatives a try. I actually don't bother with bread so much, but what I told you about will work, if you know what to expect. I don't think it makes great sandwiches, but if you know what to expect, you can give it a try and see what it's like. It still makes good toast if you just have to have toast for breakfast.
By the way, coconut oil is a great butter alternative for anyone who is also lactose intolerant, which many with IBS and IBS/GERD are.
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