Frustrated!!!!!
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| Thu, 10-18-2007 - 1:36am |
I am at my wits end trying to figure out what is wrong with me. It started in January of this year. I started vomiting and having diarrhea for about a month. I went to the dr, they gave me an anitbiotic and told me I had the flu. Took the anitbiotics, still had the same thing going on for a few weeks, then it gradually stopped. Then, in July, I started the same thing. And its been going on ever since. I am nauseated constantly. I throw up at least three times a week, and have diarrhea most of the time im not throwing up. Its gotten severe enough that i have passed out three times. I have severe pain in my lower left AND right abdomen and pain in my rectum (sorry for all these wonderfully classy details I am handing out). I originally went to my gyno over the pain and even had diagnostic surgery to see if i was having problems with my female organs. Turns out nothing more than the endometriosis I already knew I had. Anyways---I have been to countless drs, the er, urgent care...and all of them seem to think that nothing is wrong with me and I am a faker. I have been accused of being bullimic. i dropped 20 pounds in a month and a half. But now my symptoms are gradually waning off again. I am keeping more food down and putting weight back on (DAMMIT! :) ). I have been tested for celiac, which my dad has, and its not that. I have tried diets to see if i had food allergies. Right now i am trying to find a specialist that actually accepts my insurance and wont blow me off as a head case. Its just weird that the symptoms are unbearable for a while, then gradually go away and then flare up again. Any similar stories? Any words of wisdom? I am so tired of being scared of food. lol. Plus-I am a student pilot and if this keeps up I wont ever pass my medical license cause they dont want pilots passing out. (don't worry, Im not a commerical pilot yet, so you are all safe....) My dad went through the same stomach problems, but then they diagnosed him, put him on the diet and all is well and dandy. I even tried to go gluten free just in case the tests were wrong and it didnt help. I also seem to get nosebleeds and really bad headaches when my symptoms are at their worst. I am not sure if that is related or not. I also thought it might be stress related, but during a very traumatic death in the family when i was incredibly stressed is when my symptoms started to die down again. Anyways--enough rambling. Just lookin for some insight! Thanks ladies!

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wow, how frustrating for you!
Poor you...I hope you find the answer soon.
My experience was that nothing was straightforward - I had a combination of problems and that makes it harder to come to a clear diagnosis. I have food allergies that cause certain generalised symtoms, like being bloated and nauseated. I was diagnosed with IBS about 10 years ago, after a colonoscopy, countless blood tests, and ultrasound tests confirmed my classical symptoms. Took various medications for years, but the bowels were never absolutely perfect although the medications did help most of the symptoms and I couldn't be without them. Not one doctor ever questioned my IBS diagnosis, my symptoms and test results were so textbook.
Then I read about celiac disease and I had some of the symptoms. I went on a completely gluten free diet, even removing the smallest sources of gluten, like that found in some vitamin pills or soya sauce, for example. I didn't get any special tests - guess I had had enough of doctors and endless testing. Within days of eliminating gluten, my remaining IBS symptoms disappeared...after a few months, I stopped taking my IBS medications regularly, although I do take them sometimes when I need them. For me, eating the most minute amount of gluten occasionally means the following day having worsened IBS symptoms, without fail (and a sore rectum like you).
So if you have celiac disease in the family, it may be that it is one of the problems that is bothering you. Are the tests they made absolutely conclusive? The amount of gluten in wheat has increased in recent years because of genetic engineering, because gluten is the protein responsible for giving baked products their strength and structure and increasing the amount in wheat helps industrial bakeries produce baked and processed products faster and more efficiently. I believe the increase is significant since I have met older people who have developed celiac disease for the first time, having spent their lives problem free, yet developing severe symptoms like vomitting or anemia.
If you have food allergies, then you should get tests to identify the culprits. Of the remaining ok foods, follow a four day rotation diet so that new sensitivities don't develop. Of course, I should follow my own advice, but no one is perfect...
Other than allergy tests, I went on a week long fast surviving on a special liquid elemental diet (from the doctor), and after that week, in addition to the elemental diet each day I ate a new food and waited for the symptoms to develop or not. The results were pretty clear as to what I reacted to or not.
I hope this helps. For me, the best was to research myself online for the cause of my problems and I wish I had known about celiac years before. So you're on the right track. Good luck!
I dont think its food sensitivities. My mom (who has been so supportive and helpful when the drs arent) has been telling me how to eliminate certain things from my diet and see if any of that is causing it. I have kept track of what i eat and try to see patterns and nothing seems to show up.
How
I am glad that you feel that you are getting forwards...that is such a great feeling.
To answer your question about IBS, my main symptoms were abdominal bloating (like I looked pregnant and rolls of fat around my middle), diarrhea or constipation, frequent bowel movements without feeling like it was finished, and intestinal cramps, sometimes very severe, and gas. Very bad cramps during menstruation. I fell into the hands of a bunch of doctors who were unfortunately not competent, so there were too many tests for nothing. The main diagnosis came from the one who made the colonoscopy, who immediately knew although I don't know the specifics, and from the next & last doctor, who did an ultrasound of my abdominal/intestinal area and found me full of bubbles. He immediately put me on medicine for IBS (Dicetel) and I immediately deflated....a week later, a local grocer asked me if the baby was a boy or girl....sheesh. The doctor also told me to take 300 mg of Magnesium supplement a day.
Unfortunately, the medicine would become less effective after a few months, which my last doctor told me was normal. So I would stop or change and then go back to the same medicine after a break. Then I started with a Japanese prescription medicine designed for IBS that is less aggressive than many Western medicines (think philosophy "don't kill mosquito with elephant")and I took it for years with effectiveness and no side effects, supplemented with Dicetel, Coliopan or similar when needed (sometimes the IBS would just be worse). The Japanese medicine is Polyful ( http://www.astellas.com/global/about/news/fujisawa/001016a.html )and it worked for me.
My symptoms also could get worse or better and I didn't know why. I read online about celiac disease and some of the symptoms were like IBS, like I was still getting bloated around the mid-section, my bowels would get upset for no reason, and, to be graphic (sorry, but this is a forum on bowel disorders...), my feces stunk, the consistency was variable, and it floated and the rest stuck to the toilet bowl. So I just eliminated all sources of gluten from my diet - really to the most minute source - and within days, I felt better than in years, no bloating, and the fecal consistency, frequency and stickiness became "normal". There are many links online, but here are two:
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
http://www.celiac.org/cd-main.php
If I now eat a pizza or something like that, I know that my IBS symptoms will get worse the following day and I'll develop a roll of fat around the middle overnight and some thigh cellulite. The severity is never the same, ranging from very mild to bad. Sometimes I feel like I have eaten gluten but don't know how, and then when I go back over my consumption, I'll discover that gluten is used in the spice in potato chips, or something like that. But there are many gluten free products available now, including breads, pizza crusts, pastas, etc (my favorites are particularly from Italy and Sweden), so it's easy to live without gluten without missing favorite foods.
As for tests, my doctor didn't offer any conclusive test for gluten intolerance, telling me it was more a matter of deduction from other tests. But since I consistently responded to a gluten free diet, he felt that was sufficient evidence. If you read on the links, it's important to know if you are gluten intolerant, because ignoring it can lead to serious diseases.
Of course, maybe you are suffering from something else or a combination of things. Going online is a good way to find out about possible problems and being able to then ask your doctor - "what about this condition or that one?" And be sure to be systematic in the presentation of your symptoms, like when they occur, how, etc because it can help you (and your doctor) figure out what the problem(s) may be. Being systematic and "unemotional" also helps to remove any suspicion that the illness is psychosomatic, because I also had that diagnosis early on...And if you don't like your doctor or the care you are getting, get another one. I had to see several doctors before getting the right diagnosis and treatment.
Hope this helps and good luck!!
Hi, I have a 26 year old daughter that was diagnosed at age 16 with sever fibromyalgia but within the last three years while pregnant for the first time she started throwing up her food. She said this happened when she got stressed but it was occasional. Her child is now 2 and a half and she's been throwing up all her food since September of 2007. This is now June of 08. We have been to every doctor you can think of and no one knows what's going on. She also has severe headaches but no nose bleeds. The headaches come with the Fibromyalgia. Her gastrointestinal doc
I am so sorry to hear about your daughter's problem and that the doctors have not been able to help.
Has she tried any kind of mental health counseling? I do not mean to suggest that this is all in her head, but it may help her to relieve stress. Some causes of stress are not as obvious as others and it may help her to identify something she is not aware of.
I wish her the best. I hope she will find answers to the problem. Please keep us posted on how she does.
Co-CL for Stitcher's Niche
I have had pain like this myself before.
All I can say is... I feel your pain. (Seriously) I was having similar problems back in 2000 and couldn't figure anything out. I told drs something was seriously wrong, but they didn't believe me either. I got the same response. "Take this pill and you'll feel better" kind of crap. As to the headaches and nosebleeds, I would put money down that those are because you are dehydrated from the continual outflow if you will of fluids. Stay hydrated. :) As for the rest of it... I don't want to freak you out, but I was having a lot of crazy symptoms and in 2005 I finally got a dr (in Japan of all places) to listen and I had a colonoscopy. (It was
Frustrated,
I know exactly how you feel because I went through the same thing last year.
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