I Feel Like Im Running Out Of Options!

[wilem008]

*sigh*....Im so frustrated with my doctor, with everything really!

Ive had so many tests done, I even had a colonoscopy/endoscopy done at the end of last year....

Medically speaking, im healthy. I suppose its a good thing that im 'healthy' but the frustrating part is....I dont feel healthy!

Ive been gluten free since may 2008 and I know it helps. Im recently lactose free aswell and Ive started cutting back in my re-fined sugar intake aswell.

Yesterday, I went to see my gastro specialist doctor to get the biopsy results from the colonoscopy.

She told me all the biopsys were normal and that I was healthy. When I explained that Im still unwell (my biggest symptoms are nausea and constipation/diarrhoea), she suggested I try to relax, dont be stressed and eat a normal diet!! "I think you should re-introduce gluten and lactose and try not to worry so much"!!

Ahh, im so annoyed at her! She doesnt believe a damn word I say! She thinks im depressed and thats why i feel sick all the time!

But the only time I feel sad is AFTER ive started to feel sick again - not before!

So, I dont know what to do now! Ive been diagnosed with IBS but no doctor is willing to help me work out WHY my bowel is irriatable!

I even suggested to my doctor that I might have candida or a fructose intolerence but she totally dismissed it, saying It wouldnt be candida and a fructose intolerence is a myth!

Im going to contiune being gluten and lacotose free and im going to cut foods high in fuctose, despite what she says!

Im just at a bit of a loss....im considering acupuncture and getting a skin allergy test.

Ive seen a naturopath who wants to put me on a very strict 6 week detox diet - im considering trying that too....

In terms of my stomach issues - im done seeing doctors, no-one wants to help me....

Does anyone in Australia know if a food allergy specialist doctor?

I want to see someone who can appreciate the situation im in, not just dismiss me because medically im healthy....

*sigh*

EDIT: Is weight gain a symptom? My doctor tells me that im fine because im not losing weight, im actually gaining it...for no explainable reason, ive suddenly been gaining weight, ive put on 3.5kg in 4 months and I have no idea why...so, ive started to really watch what I eat - especially the amount of sugar i eat. I can tell ive put on weight, im the biggest ive ever been, im about 6-7kg bigger than what I would like...hmmm.

[wschmucks]

Step #1: Get a new doctor and keep getting new Dr's until someone figures it out and takes you seriously. I am still not better-- diagnosed Celiac in October 08, and I think theres something else going on too and I am going to everyone. It is sooooo hard. I dont know why or how i am supose to live sick possibly forever. The only thing I can do i keep going to different Drs and try to cope in the mean time. Good Luck.

[wilem008]

  wschmucks said:

I dont know why or how i am supose to live sick possibly forever. The only thing I can do i keep going to different Drs and try to cope in the mean time.

I know - when I think about spending the rest of my life feeling this yuck - well, that is really scary...how am I suppose to do that?! hmm.

Ive seen two GPs about this, a gastro doctor and a naturopth. I live in a small town and have exhausted all my medical options here...the next step would be to make an appointment with a specialist in a city....the trouble is, the nearest city to my town is about 1500km away (thats about 930 miles!)....it would cost alot of money, but I guess it would be worth it - especially if I got some answers!

Thanks for your advice - it helps to know im not the only one going through this!

[angieInCA]

  wilem008 said:

EDIT: Is weight gain a symptom? My doctor tells me that im fine because im not losing weight, im actually gaining it...for no explainable reason, ive suddenly been gaining weight, ive put on 3.5kg in 4 months and I have no idea why...so, ive started to really watch what I eat - especially the amount of sugar i eat. I can tell ive put on weight, im the biggest ive ever been, im about 6-7kg bigger than what I would like...hmmm.

Yes, Yes, Yes! Try 50 lbs unexplained. My GI told me that weight gain is just as great a symptom as weight loss. The first person he ever diagnosed weighed over 300 lbs and had been putting on weight for 5 years with out explanation.

[quietmorning01]

Good morning, wilem008!

I'm new to this thing - but I've been round and round with my stomach for about 40 years . . .so I'm going to suggest a few things that has finally brought me to the point of diagnosis.

If I don't like 'anything' about a doc, I find a new one. This might be a lot easier said than done in Australia. I know England has a different medical set up than the US does - and I think Australia does as well. When I was in England I made sure I had private medical insurance on top of the other availible medical in order to facilitate choice. Is this an option for you? I've had sooooo many doctors that refuse to test in additon to their own thinking - and they've about killed me too many times for me to sit and wait for them to come around.

.

A few tests that I can think of that you might want to be tested for: Intestinal parasites - usually these make you sicker and sicker fairly quickly, so a long term issue is probably void, but it can't hurt to check.

There is also a bacteria that tends to cause ulcers - Helicobacter pylori. For some this bacteria does absolutely nothing to, for others it can make them nauseous and sick, for others it destroys the lining of the stomach and upper intestine. Worth a check into. It's a simple blood test.

IBS can be caused by faulty nerve impulses to the digestion tract, the lack of certain enzymes, Celiac disease, anxiety, other nervous system issues - it can be a complicated thing to wade through. My sister has porphyria - which causes mini 'seizures' in her bowels. IBS is really a very difficult thing to pin down. One thing you can do to actually help yourself in this is fiber - it will help bulk things up a bit and calm things down.

I've read in several places here and on the net that it's inperative for someone to be ingesting gluten for the tests to show anything. I don't know how to feel about that. I haven't been in that position, but I'd be hard pressed to keep putting something in my mouth that's killing me irregardless. Waiting for the confirmed diagnosis is something I'm just not willing to do.

Weight gain/loss. My biopsy came out positive. I was a size three before last year (tiny person - 22 inch waist line) I was not underweight - I stayed around 122 - 125 lbs. Last year I gained 50 pounds due to the medical treatment I was on at the time for yet ANOTHER misdiagnosis. But I've been off the meds since October of last year - nearly six months. What I was doing was eating sugar like it was going out of style because I was ALWAYS craving hungry, so I didn't lose weight. My doc was stumped that the biopsy was positive and my blood work was normal. The only thing I'm very low in is my blood calcium. That's it. I'm not anemic at all. But I take vitamins regularly and CHEW them instead of just swallow them with a meal. I always take them after dinner and never with milk.

I've learned that once a doc can't find what's wrong (why do they always go straight for emotional issues when THEY can't figure something out?!) I find it next to impossible to work with them, so I usually go to someone else. I also have done an incredible amount of research on my own. Though that can be problematic, because there are so many things that do not have definitive testing that it 'could be' - and the treatment for those things can be pretty raw if you don't have the disease/disorder/issue. There is also the problem that the net doesn't always have accurate info.

Please don't give up. . .I would also caution you in self diagnosis. It's easy to fit the pegs in and say 'this is it!' when it isn't it, and completely miss what the true problem is, and the true problem could be life threatening.

It's taken me nearly forty years to finally get to what's really wrong - all because a doctor wasn't saticefied with a diagnosis from another diagnosis another doctor made and wanted to run a few more tests. (They thought I had an ulcer.) Please don't give up - keep working on it.

Hope this helps.

[ang1e0251]

Ive been gluten free since may 2008 and I know it helps. Im recently lactose free aswell and Ive started cutting back in my re-fined sugar intake aswell.

Yesterday, I went to see my gastro specialist doctor to get the biopsy results from the colonoscopy. She told me all the biopsys were normal and that I was healthy. When I explained that Im still unwell (my biggest symptoms are nausea and constipation/diarrhoea), she suggested I try to relax, dont be stressed and eat a normal diet!! "I think you should re-introduce gluten and lactose and try not to worry so much"!!

It's pretty hard to get a positive diagnosis when you had been gluten-free for so long. So the negative result does not mean you do not have celiac disease. Your dr should know that but many reportedly don't. Many of us have been told it is all in our heads. Don't be discouraged. You are in good company.

EDIT: Is weight gain a symptom? My doctor tells me that im fine because im not losing weight, im actually gaining it...for no explainable reason, ive suddenly been gaining weight, ive put on 3.5kg in 4 months and I have no idea why...so, ive started to really watch what I eat - especially the amount of sugar i eat. I can tell ive put on weight, im the biggest ive ever been, im about 6-7kg bigger than what I would like...hmmm.

[ang1e0251]

  wschmucks said:

Step #1: Get a new doctor and keep getting new Dr's until someone figures it out and takes you seriously. I am still not better-- diagnosed Celiac in October 08, and I think theres something else going on too and I am going to everyone. It is sooooo hard. I dont know why or how i am supose to live sick possibly forever. The only thing I can do i keep going to different Drs and try to cope in the mean time. Good Luck.

If you're still not well, consider you may be sensitive to something else. The elimination diet and journal would be good for you also if you suspect another food problem.

[gabby]

I'm a big believer in keeping a food journal for one solid week. Write down everything you eat, including brands, amount eaten, where eaten (at home, name of a restaurant, type of restaurant, at a friend's house, etc.)

Then post the entire week's food journal here with the subject line: help me find the hidden gluten/problem!

I know it is a drag to keep a journal for a whole week...but it goes by so quickly, and yields so much great information.

Hope that helps!

[Gentleheart]

  wilem008 said:

*sigh*....Im so frustrated with my doctor, with everything really!

Ive had so many tests done, I even had a colonoscopy/endoscopy done at the end of last year....

Medically speaking, im healthy. I suppose its a good thing that im 'healthy' but the frustrating part is....I dont feel healthy!

Ive been gluten free since may 2008 and I know it helps. Im recently lactose free aswell and Ive started cutting back in my re-fined sugar intake aswell.

Yesterday, I went to see my gastro specialist doctor to get the biopsy results from the colonoscopy.

She told me all the biopsys were normal and that I was healthy. When I explained that Im still unwell (my biggest symptoms are nausea and constipation/diarrhoea), she suggested I try to relax, dont be stressed and eat a normal diet!! "I think you should re-introduce gluten and lactose and try not to worry so much"!!

Ahh, im so annoyed at her! She doesnt believe a damn word I say! She thinks im depressed and thats why i feel sick all the time!

But the only time I feel sad is AFTER ive started to feel sick again - not before!

So, I dont know what to do now! Ive been diagnosed with IBS but no doctor is willing to help me work out WHY my bowel is irriatable!

I even suggested to my doctor that I might have candida or a fructose intolerence but she totally dismissed it, saying It wouldnt be candida and a fructose intolerence is a myth!

Im going to contiune being gluten and lacotose free and im going to cut foods high in fuctose, despite what she says!

Im just at a bit of a loss....im considering acupuncture and getting a skin allergy test.

Ive seen a naturopath who wants to put me on a very strict 6 week detox diet - im considering trying that too....

In terms of my stomach issues - im done seeing doctors, no-one wants to help me....

Does anyone in Australia know if a food allergy specialist doctor?

I want to see someone who can appreciate the situation im in, not just dismiss me because medically im healthy....

*sigh*

EDIT: Is weight gain a symptom? My doctor tells me that im fine because im not losing weight, im actually gaining it...for no explainable reason, ive suddenly been gaining weight, ive put on 3.5kg in 4 months and I have no idea why...so, ive started to really watch what I eat - especially the amount of sugar i eat. I can tell ive put on weight, im the biggest ive ever been, im about 6-7kg bigger than what I would like...hmmm.

I'm sure there are similar doctors in Australia. But I'm pretty impressed with Dr. Rodney Ford who runs a famous pediatric clinic in New Zealand. Too far away? I've read his books and it sounds like he treats adults too. They sell his books on this site. Just a thought.

[wilem008]

Thank you all so much for responding!

I have kept a food journal in the past...all it showed was that I was worse on days where I had a lot of dairy and worse on days when I had accidently had gluten.

I think i'll try keeping a journal again - see how I go.

Ive heard of Dr Ford before, ive had a look on his website - I might try and get one of his books. New Zealand is a bit too far for me to go...that would be very expensive! hmmm.

I think one of the reason my colonoscopy/endoscopy possibly didnt show any (it ALL came up negative/normal) was because, when I had the procedures done, I had already been gluten free for 6 months! My body could have healed by then....

I think i'll keep persisting....I just bought a great recipe book called "Cooking Without Made Easy"....

All the recipes are free from Gluten, Dairy, Yeast and Sugar (except fruit sugar)

Im keen to try some of the recipes and see how I feel. Im also going to cut high fructose foods like Apples, Pears, Grapes, Watermelon, Tomato, Carrot and Corn.

*sigh*....I can only keep trying.

The problem with IBS is that the symptoms for it (my symptoms) are SO similar to so many other things - For myself, Ive considered: IBS, Celiac, Fructose intolerance etc - even Candida. I have all the symptoms for Candida, yet no doctor will test for it....(Ive done the 'spit test' several times, I get a massive positive response!!)....

So, Im hoping this new cook book will be good!

Thanks for all your help guys, I really appreciate it!

Wilem