undiagnosed illness- cant find any info and could do with some help if possible

T

Tibby H

New member
hi there
im sorry if im not posting in the right place as ive never done this kind of thing before.
im looking for some help and to see if anyone else out there could shed some light as to what is wrong with me.
firstly ive had chronic diarohea for 7 years now! nothing helps it, ive had all the tests done at hopital to see what is causing it and nothing is cropping up.
im also very very lethargic and zero energy, i have NO concentration, my memory is appauling, my head feels like its swimming constantly and my eye sight is worsening constantly! i ache every where and all my joints hurt especially my back. ive tried to explain all these other symptoms to the consultants who have tried to find out what causes my diarohea and they just ignore it all.
i feel terible im struggling with work ive had to go part time because i just cant work so much and even that really wears me down.
please can some one help me? 7 years is along time and im dying to feel happy and normal again as im getting married in 4 months time!!!!
 
Well, first of all, welcome to the boards!:wave:

Chronic diarrhea with no known underlying cause (termed "idiopathic") is very common. From your use of the word "consultant", I am guessing you are from the UK, AUS or NZ?
In the U.S.A. idiopathic diarrhea usually ends up with a diagnosis of "Irritable Bowel Syndrome" (IBS for short)..

Did your consultant call it that? IBS drives doctors mad because they can't find a definitive cause. They are SO trained to diagnose, treat and/or cure, so it's very frustrating for both doc and patient.

I presume your doctors have done blood tests?
Have you ever had a colonoscopy?
A barium enema?
Is your diarrhea painless?
How often do you have to go?
Do you ever have "good days"?
Have you been tested for intestinal parasites?
Have you ever tried an elimination diet to ascertain whether you are sensitive to certain foods?
Gluten and milk products are common culprits.

What meds have you tried so far?

Without knowing more about your health history or what tests they've done for you, on the surface, chronic diarrhea can cause you to become dehydrated (even if you don't actually feel thirst) which alone can cause fatigue, lethargy, lightheadedness/dizziness.
Diarrhea can cause salt and potassium depletion which can also produce the same exhaustion.


As for your joint pain, have you ever been referred to a rheumatologist to find out if its arthritis of some kind?.... and as for the aching, if the pain is a chronic all-over-muscular-type pain, it may be fibromyalgia, for which there are medications to help.
The back pain could be related to your general aches and pains but impossible to diagnose on the internet. If the back pain is acute and really interfering with your life, here's where an orthopedist might come in.

Your back pain could simply be the result of not enough exercise, and when you feel so lousy, I'm guessing you're not getting much of it lately!:nono:

Sorry to bombard you with so many questions, but the more info we have, the more we can help (I hope!) or at least steer you in some direction, or arm you with specific questions to ask your doctor.

zuzu xxx
 
Hi Zuzu
yes im fron the Uk and ive had a few consultants over the years.
Ive had and endoscopy and colonoscopy, baruim thing, tested for all parasites, tested for liver bile, GI hormone something, you name it. ive had all tests for allergies, and all food reactions - ive spent years rulling out all types of food and trying all sorts of meds and treatments but i constantly take vits and mins supliments to keep in check.
I take re hydration stuff to keep me hydrated. my diarohea is painless but i get alot of pain sometimes before it
its about 9-12 times a day with sometimes being alot more than that.
as to exercise i keep fit as often as i can and i cycle to work and back - im lethargic the same if i didnt do exercise and if i do exercise.
its my scatty brain and memory loss thats bugging me nowerdays, im all over the place and always forgetting stuff and even swearing that i did stuff and really didnt etc etc.
 
hi
yeah the docs have just about tried everything but are completly ignoring all my other problems. maybe they are not realted to my bowls at all, but theyre all happenin at the moment!
my headaches sometimes can be very painful but 99% of the time its a continuous dull thumping pain behind my eyes that lasts for days at a time.
i decided two n half months back to stop all tablets, nothing was working anyway, and all the syptoms were/are still there. ild rather not be controlled by medication- ild rather find whats causing it and treat it, than masking it all with meds.
ive had a few consultants and they all are complelty 'cold' with me, they brush me off and dont listen to a word i have to say. they have given me no support or ideas. thats why i was soooo upset with them that i turned to the internet to see if it had any answers. we have to force them to see what is wrong with us and really demand that they do something all the time. My friend who i met at the hospital who also has an unknown problem with the bowl was told that they wernt going to do any more tests because of time and cost and said to "go and deal with wotever it is youve got" and told her to shut up and go home. it wasnt untill she became very very very poorly that they thought that they should go and do futher tests and shes now being tested for fructose intolerance. thats how it is here, you have to force the doctor to do something.
 
(Your intestinal problems combined with eyesight troubles reminded me of vitamin A deficiency - I mention it just because it is so easy to test for and it could reduce your list of "possible" illnesses considerably - good luck)

There are very few disorders in the developed world that cause vitamin A deficency. You can be tested for vitamin A deficiency through a blood test or an eye doctor can check you for night blindness with a visual test.

Fat malabsorption is the most common cause of vitamin A deficiency in the industrialized world. #1 on the list is Celiac, then Crohn's disease and pancreatic disease. (Lactose, fructose and gluten intolerance also causes fat malabsorption to a lesser degree)


Celiac is difficult to diagnose. 95% of people with Celiac remain undiagnosed, that's an unheard of number for a known disease. I don't know how it is in the UK but here in the US biopsies are often misread and/or taken from the wrong area, if they're done at all. And you can't diagnose Celiac by trying the gluten free diet.
 
sorry i forgot to mention about how bad my eyesight is: in the past six months since i got my last prescription my eyesight whilst wearing glasses is just as bad as not wearing them. (im due to go again). its terrible and headaches all the time behind my eyes
is this linked to other stuff below?
thanks zuzu
xxxx
 
Hi princessgemsie

To help you get vitamin A from your diet, use cold pressed olive oil at least one teaspoon daily, as it aids in digestion of the fat soluable vitamins like Vit. A.

Some health issues are not medically categorized illnesses, unfortunately, and it's good that your check-up was thorough. Thankfully you seem to not have a life threatening illness, though how you FEEL with what you do have isn't much better! I'm so sorry you have been left suffering! Of course you feel low energy and sluggish!

Nutritional deficiencies can cause illness, too, and medicine usually does not categorize or diagnose these issues. It is a sad state of affairs that medicine neglects nutrition so much, but at least most of these nutrional effects are known. We need to educate ourselves on nutrion and by that I don't mean the medical nutritionists or dieticians that merely say to eat within a food pyramid! I mean learn the side effects of nutrional deficiency, what nutrients are water or fat soluable, which ones store in the body and which do not, etc. Nutrients need to be respected as much as drugs and used carefully. Fat soluable nutrients can be over dosed. Water soluable are generally not easy to over dose.

Any kind of drug use can make one deficient in B vitamins.

There is a condition called Pellagra...I have yet to see a doctor recognize it. Diarrhea is Pellagra symptom caused by a B complex vitamin deficiency. My daughter had it at six months old....diarrhea for no known reason. The doctors were stumped. You don't have to have all of the symptoms to have Pellagra or B defiency.

I had given her "baby" B complex and it had not helped. It was a mid-wife that suggested the possible cause. The Mid-wife told me that she was likely unable to assimilate the pure vitamin, and to get some brewer's yeast (rich in naturally balanced B complex), and to sprinkle it on soft-cooked fruit or bananas and feed it to her.

Within three days her stool became more normal and in a week her bowels were completely normal. B vitamins feed the nerves. We use up or eliminate whatever B complex we don't use, daily, since it is water soluable, so most people do need to supplement B daily. B complex is primarily from raw whole grain which few people eat at all, much less daily.

This has been a life-long issue for my daughter...she is a high strung person that seems to use up her B vitamins very quickly.

Besides the B complex vitamin food source, probiotics may also be in order for you. I mean a good brand of acidophilis from a health food store, not just eating yogurt. Yogurt is usually so full of sugar and sugar feeds bad bacteria that can contribute to digestive pain and diarrhea.


* Another thought...along the lines of sugar you may want to cut back from sugar consumption as much as you can until the bowel issue resolves. Also, look at labels and don't use products with corn syrup or esp. not high fructose corn syrup...for some reason it is higher glycemic, meaning it raises the blood sugar faster. High blood sugar stresses the body and is just not conducive to health.

You can research Pellagra and B vitamin deficiency symptoms for yourself. Let me know if you do. Don't be scared about the severe symptoms listed, just see if any of it seems familiar to your case. You can't over dose on B vitamins.
 
Oh dear, you've got me stumped. Any one of your symptoms could be related to others- you have such a tangled history there.

Seems like your doctors have tried to cover just about everything.
Not sure if you are taking meds at present- Is it possible that some of your issues could be drug related? (Take a pill for one ailment and it causes side effects, so we take another pill on top of that to alleviate the discomfort of the side effects and around and around we go!!)

Would you characterize your headaches as chronic and if so, what do you take for them and how often?

Lastly I'd love to know what your doctors are actually telling you! Are they offering ANY substantial support and ideas? Or are they really ignoring you, as you mentioned in your first post? Any physician who brushes you off is in the wrong business.

zuzu xx
 
have you tried coconut.. I have parasites that cant always be seen. I take pumpkin seeds tonic water with quinine, fennel and cloves and cinnamon. all food items which may help. also clean house with coconut shampoo and see if this helps.
 
If they haven't checked you for crohn's disease, that might be something you might want to have checked... I was diagnosed 10 years ago (and reaffirmed later) with crohn's after 2 years of doctors shuffling me around... and the first two tests didn't give them enough info to diagnose it, they had to do a colonoscopy finally. Some of your symptoms seem familiar to me... besides the stomach/gut issues, my eyesight prescription got worse by "0.5" every year for a few years (and it was not that "bad" to begin with), joint pain, etc. Also, crohn's often causes vitamin malabsorbtion issues (for example, I can't absorb B12 and must use a B12 nasal spray). I dunno... worth trying if you can't figure it out and if the doctors will check you for it.
 
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