Opinions Needed!

[sugarlust]

heyas,

i'm new here, only just stumbled across this site about 12 hours ago. i'm 31 and from australia and have had ill health for a Long Time but tried to ignore it. 2 years ago tho i started having intestinal 'attacks' with bloating, nausea, intense cramps, pain that radiated down my legs, chills and what felt like 'fevers' and almost blacking out... and once i was actually able to have a bowel movement (violent and over shockingly quick once it actually happened!), all my problems dissapeared until the next Episode happened. sometimes it happened 3 times a day, sometimes it happened 3 times a week (but usually a daily occurance). it Seemed to happen often when i ate anything from meat to ranch dressing to bread to strawberrys! almost no food is Safe for me cuz i dont know if i will have a reaction from it and if that reaction will happen 10 minutes after eating or 10 hours!

but anyways. its been happening on and off for around 2 years, i have a week here and there where i feel Fine, have Normal bowel movements and none of the other nasty side effects of whatever it is i have got! i used to think i have stomach ulcers and doctors were no help. told me to eat rice and

bland foods and hope for the best. i started taking acid reducing tablets prescribed by the doctor and they seemed to help for a couple of months then stopped. i had a stomach ulcer test done late last year which came back negative but never had an endescopy (spelling) and have been talking to alot of ppl with stomach ulcers in the last 6 months and their symptoms seem different to mine anyways!

lately say in the past 2 months my symptoms have Escalated, almost blacking out daily, feeling Overly nauseaus, dizzy, overly sluggish and 'spacey' and have developed almost constant lower back pain (never really had that before, pain always Felt like labour pain but it only used to happen right around when i needed to go to the toilet) suddenly seem to have asthma even tho i am on preventative steriods that have helped me immensly in the past 2 years and alot more constipation than i ever had before. right now as i type i Feel like i need to go to the toilet and Know that if i could, all the pain would go away - but i cant.

i got blood tests back today from my doctor. negative for celiac and she seems to think i am having Panic attacks when i cant breath (happens sometimes after i eat bread lately, weird? ) and the blacking out is also an anxiety thing. i think it is Directly related to my stomach cuz i know when i almost black out i get chills, hot and my stomach feels like its going to explode (or my a$$ is! lol)

i know u have all probably heard this before but i need some advice on what to do next. the doctor thinks i may have irritable bowel syndrome. her advice for me is to stay calm, eat less white floured foods and come back in 3 months to see how i am going. 3 months!! i dont want to wait 3 fruccking months longer! i dont know if i should try the gluten free diet or just keep going as i have

my mother reminded me yesterday of how a Natropath once said i was intolerant of gluten and dairy (at the age of 15) and once when i was 18 i tried life without gluten for 2 weeks becuz i had alot of headeaches and nausea (only symptoms back then) and felt a whole lot better! but then i went back to it lol i was young and stupid obviously!

i'm wondering if i have always been intolerant to wheat products, or its suddenly coming to a 'peak' or what or if i Do have something else wrong with me lol

so any advice, comments, hints or ideas would be of great help to me

and thx for reading all my crap!

xox

[Nantzie]

To be honest, your story fits right in here. It sounds like gluten is a very strong possibility. I would say you should try the gluten-free diet. I had negative tests as well, and my life totally changed after I went gluten-free. I had 18 years of symptoms, the last three years of it being the worst. I also seemed to have a reaction no matter what I ate. No way to predict anything. I think it was because my digestive system was so irritated from all the years of eating gluten that it wasn't wanting anything.

There are other foods that people have severe problems with, so if you go gluten-free and find that that's not it, there is a lot of advice here about determining what other foods you may be reacting to (dairy, soy, corn, etc).

You've found the best place in the world to learn about the gluten-free diet. Just read as much as you can here and make yourself at home.

Nancy

[chocolatelover]

Sugarlust...sorry to hear that you're having such a rough time, but glad you found us! This is a great place to learn everything you could possibly need to know about these kind of issues. And no one cares if you talk about your poops!

Your symptoms, and your doctor, seem eerily familiar to me. I, too, had a dr. who automatically labled me with IBS. Turns out I have both celiac and lymphocytic colitis. I would highly recommend that before you go gluten free (or even gluten "lite") that you be tested for celiac and, if possible, have an endoscopy and a colonoscopy first. My new GI diagnosed me with celiac even though I had negative bloodwork and a negative biopsy (but I have 2 celiac genes, have the lc, and have had a positive dietary response since) because I had been not eating gluten for 4 months before I was tested. It really does make a difference. If your doctor won't agree, then get a new doctor.

It certainly sounds like you have celiac, but you really should not wait to have some more tests done, especially as it sounds like things are getting worse instead of better.

Good luck!

[Guest j_mommy]

I was diagnosed April 1 this year. I have had those same symptoms all my life!!!!! I finally now have a dR that listens to me!!!!! I think that is the trick! Don't hesitate to switch Dr's if this one is not doing what you need!!!!! Blood tests can be negative...especially if you've been following a gluten free diet! I have anxiety like sympotoms, definate bowel issues, SEVERE stomch pain ect ect. I also go through don't know if it will be 10 min or 10 hrs!!!! Find a DR that will listen and do a thorogh work up!

[CarlaB]

Lyme Disease and celiac disease have very similar symptoms. Your symptoms are very consistent with Lyme -- Open Original Shared Link.

I don't know which lab is reputable in Australia, but it's important to use a lab that tests properly ... here in the States it's IGeneX (Open Original Shared Link). You might email them and ask where you can get testing in Australia.

I would at least rule it out since you tested negative for celiac. Many Lyme patients have food and chemical intolerances. Even with Lyme, you still may feel better gluten-free. I certainly do.

[Rachel--24]

After reading your post I would have to agree with Carla....it does sound alot like Lyme.

I experienced alot of improvement going gluten-free but still continued to develop other intolerances...too many foods to list...and also chemicals.

I didnt test positive for Celiac and dont carry Celiac genes but I will remain on the diet until my other problems are resolved and then re-introduce it and see how it goes.

I would suggest eliminating all gluten from your diet (and other sources) to see how you feel. If many of those disturbing symptoms persist or more food intolerances appear despite being gluten-free...I would then look into getting tested for Lyme.

You should not get worse after going gluten-free for some time....you should gradually improve and not have "flare-ups" of symptoms without having been exposed to gluten.

Good luck and hopefully the diet alone will resolve all symptoms.

[sugarlust]

thx for all your replys!

lyme disease could be a possibilty but over here in aussie we do not have a large tick population well not in my neck of the woods. more like to get them while camping, near swampy waters etc. also over here we do not have a reliable blood test for it yet but its being 'worked on' according to medical websites.

this is my 6th day of being gluten free. food is not so hard to get used to but every now and then i think "damnit!" when i see something i want and cant have lol. and eating out will be an adventure to i imagine! i have had a tummy bug over the weekend tho (my sister and her kids had it b4 me and i was around them alot last week) wasnt fun! but didnt last too long thankfully, am being positive and hoping the gluten free diet will work for me! and if it doesnt i will surely get other tests done (been feeling so bad over past few months tho am not willing to continue eating gluten and have any more tests done for celiac) my family are being supportive (I live away from home) by buying me a few gluten free grocerys everytime they go shopping so thats nice (its expensive and i'm not working atm!)

some other things i have noticed, i have had brain fog on and off (but constant) since i had a kid (7 years ago) and i always Prided myself on having the best Memory but these days (and for years and years ppl talk about something and i'm like, I cant remember! and they are like, that happened yesterday + to me it felt like weeks ago! (always felt embarrassed lol) lol and keep getting mouth ulcers (canker sores i guess) but i didnt link them to possible celiac/gluten intolerance! interesting really...

hope everyone has a great Monday!

[Eriella]

Your symptoms sound a lot like mine. I am in the process of waiting for bloodwork to come back, but I found that I feel so much better now that I have changed my diet. Even though your life is easier with a diagnosis, I have decided that it is not worth feeling like crap for my doctors to believe me that it is "white bread" (the complaint I have had for 2 years, and no one connected it to gluten or told me the obvious: if it hurts your stomach, don't eat it). I would suggest going completely gluten-free for the three months and keep a journal with your symptoms. If you feel better, stay off from gluten.

[CarlaB]

I would email IGeneX to see if they can either test you or recommend someone who can.

The Lyme docs say that the only continent free of Lyme is Antarctica! I got it in a "no risk" area myself. The only reason my area is "no risk" is because no one here diagnoses it! I had to travel by plane to NY to get diagnosed and treated.