Discussions By Condition: I cannot get a diagnosis.

Abd Pain, Bloating, Severe diahrrea, etc.

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: jennifer_33_17
  • April 15, 2008
  • 06:16 AM

I have been really sick now for 13 years, and before that I had issues with vomitting alot. I have been to numerous doctors over the years. My parents spent half of my childhood taking me back and forth to a childrens hospital to try to find out why I was so sick. I began having problems with severe diarrhea and vomitting uncontrolably at age 12. It happened to also be around the time when I started my period and my symptoms seemed to get worse around my periods. I began seeing doctors which would rule out everything GI wise and then go on to say I was making it up or that I was simply insane.

After standing my ground with my GI doctor he finally gave me the label of having IBS, without so much as running any more tests. In the last twelve years I have seen numerous doctors and have came up with different diagnosis after each one but after medications do not work they still end up labeling me IBS and not looking any farther for anything else that explains my symptoms. I have tried everything from herbal remedies to vitamins to hours and hours of research on the internet.

I have been diagnosed with IBS, GERD, spastic colon, endometriosis, stomach ulcers, h-pylori, inflammation of stomach and intestines, and the latest an elongated colon that is twisted. when the medications for these conditions doesnt clear up my symptoms they simply state that I am a hypochondriac, depressed, or have alot of anxiety and then they offer psych meds...lol I finally gave up after about 10 years and said ok if I am crazy then give me some meds to make me all sane again. And BIG SUPRISE I was still sick. So I am asking for your help. My symptoms include violent bouts of diarrhea (not controlled by diet or drugs even immodium 10-12 a day doesnt stop it), nausea, reflux, bloating, severe abdominal pain, abnormally loud bowel sounds, gas, stomach cramps and other symptoms that may not be related severe migraines, neck pain, back pain, tingling and numbness that comes and goes in my hands arms and feet, and i think thats about it but I could be forgetting something. I have also been told I should not be able to feel the pain in my intestines when food passes through but I do and doctors never could figure out why I have that hyper sensitivity. At one time when I was about 13 or 14 doctors had me on enough meds for a 300lb man and they were doing absolutely nothing to me. They also never figured out why that happened. Any insight anyone can give me would be much appreciated!!!

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9 Replies:

  • Hi Jennifer! Wow, you sure have had a lot going on! Lots of digestive issues....have you been tested for Celiacs disease? Have you thorough explored diet issues? Have you done elimination diet to check for food sensitivities (not allergies) and or food allergies? One doc I had told me that even the tiniest bit of the offending food can cause problems to a sensitive person...even a grain! This may be something to explore...hard to do (I did it once...bland diet and slowing adding in foods to see...keeping a diary...etc). One big flag is the symtpoms starting around your period. Now I mention this as I am in perimenopause (I am not suggesting you are going through menopause ;)) but to mention this as a way to explain that fluctuating ovarian hormones, can and DO cause many, many, many strange and uncomfortable symptoms definitely INCLUDING digestive issues. Have you ever explored this with a GOOD GYN (perhaps women doctor who specializes (don't freak out) in menopausal issues?) Again I only say this kind of doctor as she would be open to the kind of issue that ovarian hormones can cause.... Are you on any birth control pill? A BCP can go both ways: it can help to calm the hormones by shutting down your own production and regulating the amount of hormones your body has at a given time....levels things out so to speak, and it often helps women. However there are many kinds and brands and some kinds and brands don't match with certain women and only make things worse. Ok, so now we have 1. Celiacs or other food sensitivities issues 2. Ovarian/hormonal issues I am sure there may be other things, but here are a couple you might want to explore. Hope this helps, and write back if think I can be of further help... Oh, and if you can list in an easy to read way, what you have already been tested for, might make it a bit easier to help...Joan
    Joan5555 316 Replies Flag this Response
  • Definitely check about Celiac disease. It can cause neurological problems (the tingling you mentioned) as well.
    GD2005 61 Replies Flag this Response
  • I would research possible GI infections (parasite (helminth, fluke, protozoa, microsporidia) and bad bacterial infections of the gut. You may want to research jordan rubin's book "patient heal thyself" , badbugs dot org, candida protocols etc. There are some alternative labs that can do stool examinations for dysbiosis and check for parasitic/bacteria issues. Although I would note that testing for parasites thru the stool is unreliable. Multiple tests need to be submitted. I would also research the term "leaky gut" syndrome, which is a term to state that infectious organisms damage the intestinal lining causing more symptoms like food allergies or sensitivites. Search for Dr. Leo Galland and his articles on leaky gut. Use of good probiotics like Dr. Ohhira's formula, Culterelle, or EPS formula by Jarrow could be a good start. Any kind of infective organisms are going to disrupt the whole ecosystem and are going to cause multiple problems such as depression, fatigue, joint pain etc.
    LINENUP 122 Replies Flag this Response
  • The "gets worse around my menstrual cycle" makes me think of a rare disorder called hereditary angioedema. But you don't seem to have any swelling associated with your problems, so it is a very very long shot. Try here: www.haea.org
    aquila 1263 Replies Flag this Response
  • Let me first say thankyou to everyone who replied, i greatly appreciate any advice or ideas you have. I have been tested for gluten allergy/celiac disease. I came back negative. I have also been tested several times over the years for parasites etc. in my stool. I have been treated for my h-pylori with both proton inhibitors plus major antibiotics twice once when I was 12 once last year. For a few years I completely rearranged my diet to see if it was spicy food, certain foods, dairys, glutens, any kinds of allergies but no luck I got to the point where I was drinking only water and eating crackers or if I was cutting out gluten or whey I would eat only one fruit or something. I think I have had every test known to man as far as my stomach or intestines is concerned. I have also tried almost any kind of herbal or proibotics out there after I gave up on finding a doctor who would be able to fix me. I am about at my wits end with this sickness. I am too sick to work or even take care of my two year old most of the time. I have missed so many things in my life it is ridiculous. Please keep the info coming I am checking into each thing you all have suggested so far and will be checking back to see if anyone else has anything to say. Thanks Again!!!
    jennifer_33_17 1 Replies Flag this Response
  • have been tested for gluten allergy/celiac disease. I came back negative. I have also been tested several times over the years for parasites etc. in my stool. I have been treated for my h-pylori with both proton inhibitors plus major antibiotics twice once when I was 12 once last year. For a few years I completely rearranged my diet to see if it was spicy food, certain foods, dairys, glutens, any kinds of allergies but no luck I got to the point where I was drinking only water and eating crackers or if I was cutting out gluten or whey I would eat only one fruit or something. I think I have had every test known to man as far as my stomach or intestines is concerned. I have also tried almost any kind of herbal or proibotics out there after I gave up on finding a doctor who would be able to fix me.I am about at my wits end with this sickness. I am too sick to work or even take care of my two year old most of the time. I have missed so many things in my life it is ridiculous. Please keep the info coming I am checking into each thing you all have suggested so far and will be checking back to see if anyone else has anything to say. I would suggest that parasitic testing (stool) is unreliable, in that multiple tests would have to be submitted. In my research according to the horse Vets, there is only about a 3-5% chance of finding parasites in the stool examination, they just deworm w/o a positive dx. Dr. Leo Galland treats chronic fatiguers and always looks for GI infections -beleiving this is the genesis for systemic problems. He has gotten to the point in which he no longer tests, he just treats. I have a worm infestion in which stool exams were submitted w/ a negative, they came out after the fact. There can be some sneaky infections such as protozoa and microsporidia which again are hard to detect, I do beleive that PCR testing may be able to identify these. Badbugs dot org has info on d. fragilis and b. hominis which have been controversial in that they were/are beleived not to be pathogenic. You could force your doctor to write a rx for some anti-helminth something like Vermox or Albendazole or Prazquantel (worm, tapeworm and fluke) to start. These are very short term meds that work within a week. Observation of the stool would be the telltale sign, although I have heard there are multiples of nematodes that have yet to be identified and may be microscopic. The other option is to investigate self-treatment using herbal remedies I would suggest products like ParaCleanse by Banyan's or Barefoot's Dewormer, Vaxa Parasitin. You can come to curezone and visit the parasite support forum -we are an active group providing support for parasite strategies. If you go there give me a shout under my name Linenup. If you did some probiotics (I hope they were good ones = in that enteric coated or derived so they can withstand living thru the bath of hydrochloric acid that your stomach produces) with no result, this may be indicative of not having a mutant bacterial strain or perhaps yeast. The other option would be viral infection in the gut. The gut is of major importance in the immunity of the entire system, as major immune functions (Peyer's Patches) reside there. Leaky gut will cause food allergies or sensitivies (sp) overwhelming the body particularly the liver detox system. The protozoa family including microsporidia could be a factor in this as well, giardia, cryptosporidium etc. could be a contributing factor for sure. There are a couple of TCM (chinese) herbal blends that may help 1. Jin Wei Ping Wei San (Min Tong Powder) 2) bupleurum, cinnamon, ginger (Min Tong Powder) and you might want to look at Mume by Min Tong. Go to Max Nature for these products. These are products designed to help the digestive system. Mume being a anti-worm blend w/ support. I take these in addition to a fiber product, Glutamine (support of intestinal lining) GABA, vitamin A, some anti-inflammatory herbs and use of charcoal which acts as an adsorbent of toxins. Post if I can help you any further.
    LINENUP 122 Replies Flag this Response
  • It really sounds like food sensitivities or allergies. They can give one headaches too, so that could be related. (i myself get a headache from too much milk). I have been tested for gluten allergy/celiac disease. I came back negative. What kind of celiac disease testing did you have done?? 10%? of celiac disease cases dont show up in the regular testing that is done.. and to rule it completely out either genetic testing to show that you dont have the genotype for it or a bowel biopsy to rule it out, needs to be done. My nanna has had problems with your symptoms including severe tummy pains, all of her life but was only diagnosed with IBS. Late last year thou, it was finally found out she has lactose intollerance! (There is a test for that where they give one lactose and she ended up very very ill with it). IBS will often flare with the hormones (it does in my own case, almost every month without fail)... finding out the things which trigger it (foods etc) does help one have less issues with it all.
    taniaaust1 2267 Replies Flag this Response
  • Hi! Get your stool tested for Clostridium Difficile Colitis! I had that and it's the worst. Do you have blood in your stool? Anyways, the short name is CDIFF. Research that and definitely get tested for it! Hope that helps!
    Anonymous 42789 Replies Flag this Response
  • Let me first say thankyou to everyone who replied, i greatly appreciate any advice or ideas you have. I have been tested for gluten allergy/celiac disease. I came back negative. I have also been tested several times over the years for parasites etc. in my stool. I have been treated for my h-pylori with both proton inhibitors plus major antibiotics twice once when I was 12 once last year. For a few years I completely rearranged my diet to see if it was spicy food, certain foods, dairys, glutens, any kinds of allergies but no luck I got to the point where I was drinking only water and eating crackers or if I was cutting out gluten or whey I would eat only one fruit or something. I think I have had every test known to man as far as my stomach or intestines is concerned. I have also tried almost any kind of herbal or proibotics out there after I gave up on finding a doctor who would be able to fix me. I am about at my wits end with this sickness. I am too sick to work or even take care of my two year old most of the time. I have missed so many things in my life it is ridiculous. Please keep the info coming I am checking into each thing you all have suggested so far and will be checking back to see if anyone else has anything to say. Thanks Again!!!i have the exact same thing(exactly) i am in tears sometimes. i have been through all the tests to and still no answers. i know how you feel. if you ever figure it out let me know and i will do the same for you...thinking of you, jan
    Anonymous 42789 Replies Flag this Response
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