Discussions By Condition: I cannot get a diagnosis.

GastroIntestinal Issues starting many years ago (without diagnosis)

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Mazley
  • June 3, 2008
  • 04:58 AM

Hi All - Please forgive the long post, but I want to get as much detail out as possible.

All started when I was 13 (13 years ago). I had my appendix removed (with the presumption of appendicites). The appendix was fine, however, the surgeon at the time made mention of lymph swelling, which should be followed up by my doctor (this never happened). My stomach issues got better after appendix removal.

About 3-4 years later, I had a weird couple of weeks where the idea of eating anything other than plain salted potato chips and orange juice made me physically sick to my stomach. This seemed to resolve itself.

4-5 years later (I was about 21), around Christmas, I'd gove to a couple of parties, and drunk more alcohol than I should of, and became ill (figured it was just too much alcohol), however, I became increasingly unwell, and was admitted to hospital a day or 2 after new years. I had blood cultures, x-ray and was given acid reduction meds. (was also given morphene for the pain, and maxilon for nausea). Was discharged from hospital when they said they were going to do a endoscopy, and I asked to consult my gastroenterologist.

I then followed up with my gastro, who told me my billirubin had been very high when I was admitted to hospital (he'd got the records). I had an endoscopy done, as well as several blood tests, but the billirubin had gone back to normal, and the endoscopy showed some mild inflamation of the osophegus, but nothing to explain how ill I was. He told me that I had had a virus, and probably had CFS, and that it would sort itself out between 6 months and 2 years. Around 3 months later I started feeling better, and continued to get well, but never back to 100%.

The most recent evolution of whatever this is happened in June 07. Again, I had gone out with work and had had several drinks, became ill, and vommited quite a lot (something I hadn't done since my second bout of pnemonia in 93). Was given a sulpher based antibiotic (can't think of the name). Was on liquid diet for a couple of weeks, tested for pancreatitis(came back neg.), started on probiotics, and started feeling well enough to eat normally again. Then, before christmas my symptoms started again, and haven't left since. The seem to wax and wayne. The symptoms are below:
-Stomach pain (sharp, random stabbing pain, not localized to any area)
-Strong Hunger (though eating makes the nausea worse)
-Trouble Sleeping
-Occasional heart flutter
-Occasional pain in left chest when trying to inhale deeply
-Occasional severe pain that feels like it's shooting up through the anus into the stomach(weird I know)
-Lump behind right ear (has been there for years)
-Swollen tonsil (again, like that for years)

Now, for the tests I've gone through in the last 6 months:
-Endoscopy and Colonoscopy (lamina propria looks mildly oedematous and congested)
-Barium Cat Scan (all clear)
-Upper Abdo Ultrasound (all clear)
-Bloodworks, with the following abnormalities:
*Immunoglobulin A (Total IgA) - 4.78 g/L
*Billirubin - went 21, 17, then 26 umo/L
*Urea - 2.4 mmo/L
*Cholesterol - 3.7 mmol/L
*Cortisol (a.m was 599nmol/L, which is fine, but p.m was 452nlol/L, which is slightly elevated
*TSH - .5mU/L (borderline)
*B12 - 148 pmol/L (have had several injections for this, as well as the folate below)
*Red Cell Folate - 620 nmol/L
And stuff that been tested but come back fine in bloodwork:
*C Reactive Protein
*ENA Abs (Autoantibodies)
*Intrinsic Factor Antibodies
*Anti Neutrophil Cytoplasmic Antibodies (C-ANCA and P-ANCA)
*Antiparietal Cell Antibody

Really hope someone has an idea about this, if anyone has the time to read through this whole thing. I'm currently trying meditation, acupuncture, am only working a couple of days a week, and eat a bland diet with only good stuff going in (ie, water, fruit, vegetables etc)

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11 Replies:

  • Have also started wearing magnetics (getting desperate)!
    Mazley 5 Replies Flag this Response
  • You seem to get better when you limit your diet. Maybe celiac disease. Try here: http://www.digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm
    aquila 1263 Replies Flag this Response
  • Have been tested for celiac - and also have tried an exclusion diet, alas, to no avail. In regards to parasites, I have taken a course of Biltricide (kills a fairly large amount of them), and there were no signs of cysts in the liver on my ultrasound (which is often what happens the parasites are located in the liver). In regards to Lyme, I'm trying to find a doctor who can test for this (very hard in Aus). Am on Amoxil at the moment, which I've read can help lyme. Don't mean to be shooting down every idea, I do appreciate the suggestions, just figure I'm more likely to get a diagnosis if I keep ruling things out....
    Mazley 5 Replies Flag this Response
  • Elevated levels of cortisol in the pm can be caused by a tumor (90% of them are benign) in the pituitary gland. Elevated levels of cortisol can also be caused by a tumor on the adrenal glands just above the kidney. Cortisol is supposed to be high in the morning and low (close to nothing) in the pm. When the rythm is turned around that could be a sign of cushings syndrome. The elevated levels will keep you up at night and when they drop in the am you will fall asleep. Cortisol also causes weight gain, hair loss, thyroid problems and more. Try doing a search on hypercortisolism or cushings and see if you think that might be you. If so you can try using www.cushing-help.com. They have a great forum there and they are very helpful. Kiera
    Anonymous 42789 Replies Flag this Response
  • Your history is very interesting and there are things in it which point to that it could be CFS 4-5 years later (I was about 21), around Christmas, I'd gove to a couple of parties, and drunk more alcohol than I should of, and became ill (figured it was just too much alcohol), however, I became increasingly unwell, and was admitted to hospital a day or 2 after new years. Most people with CFS have alcohol intollerance.. so much so that a couple of the well known CFS experts.. wanted that put that into the CFS diagnoses protocol. Alcohol tends to make most of us (ive got CFS too) quite sick.. so your history of becoming ill from there and staying ill.. well is interesting. (you should probably also search for other illnesses in which alcohol intollerance is present). Cortisol (a.m was 599nmol/L, which is fine, but p.m was 452nlol/L, which is slightly elevated In CFS there is often abnormalities of cortisol found... Very often it's low in CFS (in a third of cases) but others with CFS, find that it goes all over the place.. and at times abnormally high readings do come back for it. (this is a subject with has been discussed in length at a CFS site im involved in.. several of the others have high cortisol readings at times). from another site Chronic Fatigue Syndrome/ME and Fibromyalgia plus Associated SyndromesEvidence for their organic basis: A summary of the suggested underlying pathophysiologies and treatment approachesDr. Andrew John Wright A genetic sequence was found in 77% of CFS sufferers and 0% of controls, which helps explain cognitive problems. Phase-shifted high metatonin output in 36% of cases and no melatonin output in the rest indicates disturbance in conversion of serotonin into melatonin and help explains insomnia. Low DHEA and oddly fluctuating cortisol lead to catabolic dominance. There is also a depressed central opioid tone which accounts for some of the pain. Atrophied adrenal glands were consistently found, 50% of normal size. It is possible that adrenals are downregulated by the brain due to constant stress messages. Another steroid, OLS, is low, leading to poor cell energetics. CFS patience expend more energy when resting. CFS can be triggered by exposure to organiophosphates and chlorines. There is a functional hypothyroidism in CFS. They produce enough hormone but are hypothyroid in a cellular level. This could be a result of cytokine mediated illness or high or low levels of cortisol. I dont know much about Billirubin .. so i just did a search to see if there is any connection with that and CFS.. and came up with the following i'll post in next post.
    taniaaust1 2267 Replies Flag this Response
  • Gilbert's and chronic fatigue syndromes in menGilbert's syndrome, a symptomless familial hyperbilirubinaemia, has also been described as "benign" and a condition in which "some patients complain of symtoms such as... weakness but these are non-specific and may reflect a coincidental occurrence". We report 7 men with chronic fatigue syndrome and Gilbert's syndromeThese patients were from a total of 45 men referred with chronic fatigue syndrome. Therefore 16% of this population had Gilbert's syndrome, which compares with 2% in the general population. All 7 were referred to our fatigue clinic and met the Oxford criteria for chronic fatigue syndrome. The fatigue was severe, had been present for at least 6 months, and was incapacitating. Foulk et al reviewed 118 patients said to have a diagnosis of constitutional hepatic dysfunction. 58 were thought to have Gilbert's syndrome. Fatigue was the most common symptom, mentioned by 38. Gastrointestinal symptoms were also common. The investigators thought that the symptoms were secondary to anxiety about being told of chronic hepatic illness. Olsson et al isolated finding of hyperbilirubinaemia, and suggested that "Gilbert's" is merely a label applied to patients whose serum bilirubin is greater than two standard deviations above the mean. We do not think that our observations can be attributed to the patient being told that he had a chronic liver disease because few knew they had Gilbert's syndrome when referred. We reject the modern view that Gilbert's syndrome is symptomless, and think that it is a predisposing or perpetuating factor for the chronic fatigue syndrome, especially in men. Another illness, such as an infection, may precipitate a chronic fatigue syndrome in these predisposed men. Note: The study states that Gilbert's Syndrome occurs in 2% of the general population, and 16% of people with CFS have GS. This would be an 8x greater chance of having CFS, but many figures I've seen say that the percentage of people with GS is 5-10%. This reveals a 2x-3x greater chance of having CFS. Still significant, but I'm curious where the oft-quoted "4x more likely" comes from. http://en.wikipedia.org/wiki/Gilbert's_syndrome Gilbert's syndrome and chronic fatigue syndromeDr Cleary and Dr White (March 27, p842) describe a high prevalence of Gilbert's syndrome (16%) in men with chronic fatigue syndrome (CFS) and suggest that "Gilbert's syndrome is a predisposing or perpetuating factor for the CFS, especially in men".Since November, 1991, we have been investigating the prevalence of CFS among patients with severe fatigue. Among more than 120 subjects referred to out fatigue clinic, we identified 41 female and 16 male subjects with fatigue persisting for at least six months and several non-specific symptoms (fever, sore throat, myalgia, arthralgia, neuropsychiatric disturbances). 6 subjects (5 female, 1 male) met Centers for Disease Control criteria for CFS diagnosis (group A); 33 (22 female, 11 male) did not fulfill the second major criterion of this definition (absence of any other conditions producing fatigue), and an alterative diagnosis was formulated (group B); and 18 (14 female, 4 male) were classified as probable CFS (two major criteria associated with six or seven minor criteria) (group C). Gilbert's syndrome was diagnosed in 6 (11%) of the 57 patients with lasting debilitating fatigue. Gilbert's syndrome was identified in a female patient with overy CFS (1 of 6, 17%), in 2 men and 1 woman of 18 (17%) with probably CFS and in 2 women in group B (6%) with relapsing polychodritis and hypothyroidism, respectively.As Clearly and White show, 16% of our overt and probable CFS population had Gilbert's syndrome. This prevalence is much higher than the 6% in the group with fatigue associated with causes other than CFS and the 2% in the general population. However, we identified the syndrome in women and therefore we would like to modify slightly their conclusion: GIlbert's syndrome can be regarded as a predisposing or perpetuating factor for CFS in both sexes.In Short: This expands the above to both sexes. http://www.ncbi.nlm.nih.gov/pubmed/8097856?dopt=Abstract anyway.. maybe you have this Gilbert's syndrome and the CFS?
    taniaaust1 2267 Replies Flag this Response
  • maybe you'll find these posts from others interesting.. (i dont know the link to this forum as it's now inactive.. found it cut and pasted onto another site) crismattThe doctor said that as there were no symptoms with GS, these were being caused by ME. We were given a leaflets about ME and told that eventually she would get better. On her next visit another doctor didn't mention ME at all. When I questioned this he said that he didn't like people being labelled with ME (or as he preferred to call it 'Chronic Fatigue Syndrome'). He said that although medical opinion was that there were no symptoms with GS, everyone he saw diagnosed with it suffered similar symptoms. He said although there was no proof they were caused by GS, it seemed likely that GS did have something to do with it. I had a similar experience. I tried to discuss with various Doctors I have seen over the years certain aspects of GS but the moment I mention the possibility of a link with GS there seems to be a perceivable change in attitudes. The whole experience over many years was frustrating in itself. My Doctor eventually diagnosed Fybro Myalgia but I still ended up in the ME clinic all be it after a three and a half year wait just for an appointment. They suggested reading some books regarding approaches to life which all seemed a bit of an anti climax in the context of a desire for some relief when symptoms were at their worst. When I mentioned the wait for the appointment I was just advised "it was a very busy department". Now there's a thought. DannystalleyIts disturbing to see that the majority of GP's are still ignorant to ME & GS. I agree with you that ME/CFS is often wrongly diagnosed as the illness where recent evidence (for me at least) clearly points to GS.byjingoHas anyone had ME or CFS (Chronic Fatigue Syndrome) with Gilberts? I have had CFS off and on since 1985, but Gilberts only started to show up in the past two years. JeelbearWhen I first got sick around 1990 the docs all assumed it was CFS because all the symptoms were there. They ran lots of tests for everything including poisoning, and then decided it may be CFS but was probably just exhaustion from overwork and yada-yada. I never really bought that idea. The Gilberts turned up in the tests (they told me as an aside but reassured me it was nothing at all) and they never put it together as the possible root cause but now that I am more informed I believe that is the case. ByjingoThere is a set of symptoms that is now recognised as CFS, and I quote below:"Chronic Fatigue Syndrome/Fibromyalgia (CFS) is an emerging illness characterized by debilitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a variety of flu-like symptoms. The illness is also known as chronic fatigue immune dysfunction syndrome (CFIDS), and outside of the USA is usually known as myalgic encephalomyelitis (ME). In the past the syndrome has been known as Chronic Epstein-Barr virus (CEBV).The core symptoms include excessive fatigue, general pain, mental fogginess, and often gastro-intestinal problems. Many other symptoms will also be present, however they will typically be different among different patients. These include: fatigue following stressful activities; headaches; sore throat; sleep disorder; abnormal temperature; and others. The degree of severity can differ widely among patients, and will also vary over time for the same patient. Severity can vary between getting unusually fatigued following stressful events, to being totally bedridden and completely disabled. The symptoms will tend to wax and wane over time. This variation, in addition to the fact that the cause of the disease is not yet known, makes this illness difficult to diagnose" Like you, I wonder if Gilberts has not been the cause all along. You wonder how 'benign' it is, given that there are a number of us who are identifying the same health problems. For me, I regularly have a sore throat, swollen glands and fatigue, sometimes fever, and fairly frequent headaches. My acupuncturist has identified the liver as a real problem for me (before I knew about Gilberts). MacpghI got sick in the big wave back in 1985/1986, with CFIDS. About 6 years after that fact & previous blood test results, is when my bilirubin began to exceed the high limits significantly. It has been elevated since then, and at the end of 2001 I had new blood work that showed I was even higher. I have never recovered from CFIDS and I'm having the neuro problems now for the last several years. MartinSNap! I was diagnosed with Post-Viral fatigue syndrome (also knowb as ME or CFS or CFIDS) nearly 10 years ago and my liver tests came up with Gilberts Syndrome, but they said it was nothing to worry about. SO, I had the diagnosis ME! Now I am in a relapse I went to see Dr Hyams who is a harley street specialist of ME/CFS and he is giving me high doses of vit B12 (like 25000% RDA 3 times a day) and I might need some injections of Glutathione...he did say that people with Gilberts are more suceptible to getting ME/CFS.....but then noone know what ME/CFS really is after 50 years of looking and the doctors say that GS doent cause any symptoms. whosGilbertI was diagnosed with GS in 1990. That diagnosis also coincided with a diagnosis of meningitis, twice in one year, and also glandular fever, from which it's suspected that I had/still have CFS. The CFS diagnosis was arrived at by doing a Live Blood Test (in Australia), which means the practitioner can actually see white blood cells as they "swim around" in your blood sample and count them, and also identify which type they are. This gives a clear picture in conjunction with blood tests as to a diagnosis. What was found in my case was that there were many "left over" white cells used in killing Glandular Fever, and that these should have by that time disappeared from the blood stream unless the body had not fully recovered (and now I know that is often the case with GS...it takes us longer to get over viruses) and therefore, along with all my symptoms I still had (and have), a diagnosis of CFS was made.It is now 2002, and I'm still battling this, only now I have alot more information thanks to everyone's feedback here......K. NosnoborrenoeleWow! What an interesting thread! I have a diagnosis of post viral fatigue syndrome (CFS/ME). I just came across this website yesterday when I was doing a bit of research into my CFS. I have slightly elevated bilirubin levels and wondered what this has to do with the CFS. Well that was how I learnt about GS. I must stress that I have NOT been diagnosed with GS but I'm just beginning to wonder if it might be a possibilitycrismattAt one point my 15 year old daughter was told by one doctor she had Chronic Fatigue Syndrome as well as GS. We think this was the doctors way of saying GS is benign so we need an answer for the symptoms! WE don't think she has CFS at all. Gilbert's syndrome, often shortened to the acronym GS, is the most common hereditary cause of increased bilirubin, and is found in up to 5% of the population (though some Gastroenterologists maintain that it is closer to 10%). The onset of GS is often in childhood or early adulthood. so that fits too.
    taniaaust1 2267 Replies Flag this Response
  • Hi this sounds like a protozoa or babesiosis infection. Get tested and use the IgeneX Inc. lab test. they are located in in PaloAlto, California, they seem to achieve the most conclusive results!! and they can test for lyme disease using a pcr test. Dr. Harris in Malibu California is a lyme specialist if you need help he also knows about babesiosis!!! Babesiosis is rare and it sounds chronic in your case. Or maybe you have a similiar parasitic occurrance.
    Anonymous 42789 Replies Flag this Response
  • Hmmmm....I can see my biggest problem in getting some testing done for the above problems been doctors who either aren't willing, or don't understand the tests I need. Does anyone know of any decent docs in Australia I could go to (specifically in the Brisbane area)?? Thanks everyone for all the help
    Mazley 5 Replies Flag this Response
  • Hi this sounds like a protozoa or babesiosis infection. Get tested and use the IgeneX Inc. lab test. they are located in in PaloAlto, California, they seem to achieve the most conclusive results!! and they can test for lyme disease using a pcr test. Dr. Harris in Malibu California is a lyme specialist if you need help he also knows about babesiosis!!! Babesiosis is rare and it sounds chronic in your case. Or maybe you have a similiar parasitic occurrance.As Mazley already said, Australia--long cry from California. Does sound alergic to me--considering the other info on CFS posted here and the doctor saying that, it seems to point to it. As far and the lyme and its infections go--get tested by all means, but its a VERY common suggestion on here. Does australia have something like the CDC (center for disease control)?
    chromegirl666 101 Replies Flag this Response
  • Hi there...I know you were tested for Celiac Disease, but a lot of times people have it and get a false negative. This usually happens because they don't have enough gluten in their system at the time of their test. In order for the test to work, you have to eat a decent amount of gluten every day for about 5 days before your test. That way, your body will produce the antibodies (the reactions to gluten) that make a test show up positive. It will only show up positive if you have those antibodies, of course. A lot of the stuff you describe having problems with is also exactly what happens in the body when you have Celiac Disease. The things you are describing sound exactly like what my mom went through. She has gone through 30 years of digestive problems, feeling tired, sick, pukey, hypothyroidism, gall bladder removed, half her stomach removed, etc. She also struggled with alcoholism and depression. Celiac is hereditary, and most common in people with Irish ancestry. But people of every background are affected. It's only since I got diagnosed and started researching it that I suggested she go gluten-free. In the past two weeks, she has been gluten-free and taking digestive enzymes as well as Vitamin B6, B12 and Folic Acid supplements. Her digestive issues have gone away, all of her aches (that she attributed to getting older) have disappeared, she has tons more energy and feels fantastic for the first time in decades. She accidentally ate gluten yesterday, and all the symptoms came back (feeling sick, running to the bathroom, achey, exhausted, weak). It's amazing. I'm stunned that more doctors don't know about this and suspect it first thing. Eat wheat bread sandwiches for lunch and dinner for 5 days and get tested for Celiac again! It can't hurt and it might be the answer to ending your pain! :) Good luck.Melissa G
    Anonymous 42789 Replies Flag this Response
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