Review your favourite places to eat, shop, holiday and be gluten free.

I'm lost and confused about what to do and how to go about this.

by Tam.
(VIC,AUS.)




Hello. :)


So 4 years ago I was very ill,wow it was a tough time for me. After months of going to the doctor and them brushing my health off they finally sent me for tests.

After a few blood tests and a camera down into my stomach I was told I have IBS. Now to me IBS is more of a lazy term as I have noticed over my 4yrs with battling doctors regarding my health that they label alot of people IBS which just means (something is wrong with your gut and we either do not care or we are too lazy to find out). Haha.


Every day I can honestly say I feel unwell in some way or another. I have suffered from headaches for many many MANY years which sometimes lead to a migraine.

My head always hurts but I have learnt to live with it and more often than not its a dull ache or if its sharp pains it comes and goes.

I get sharp pains in my head too which I have had two head scans,thats how bad they were.

I have alot of cold/flu like symptoms,you know when you just feel like you're coming down with something.

My immune system seems to take a beating with me picking up alot of things that go around. My moods,well I find myself being moody. And I seem to have alot of sinus problems.

Also I have suffered with acid reflux/ heat burn for 4yrs too. Then there is the pain or unwell feeling in my stomach which can be from anywhere to a slight pain to a pain where I want to rip my gut out and get on with things.

I feel dizzy alot or light headed. I am always tired and its more than a normal ''had a busy day'' tired.



My overall health has been aweful for 4yrs. I have been for so many tests and even went to a hormone specialist for issues,on paper I am ''healthy''. And this makes me so mad because I feel so sick all the time.

Doctors have never said anything to me about gluten intolerance or whatnot. They refuse to listen to me when I say perhaps this is what is the cause.

My symptoms do not always come all at once together and sometimes I just feel unwell most days. I'm only 24 so I should not feel like this.

So I had a bad time 6-8 months ago where the pains in my stomach changed and worried me. So I had an ultra sound on my gall bladder and it was alright. Then they tell me that perhaps I need another camera down my throat into my stomach to see whats going on and I havent gotten around to doing this.

Just recently I went to Melbourne to a specialist dietitian and they told me to get my doctor to do a celiac blood test. That came back negative. They told me if it comes back negative then I do not need the breath test thing for celiacs and just to proceed with gluten free diet.

What do I do. I am so lost and over it all. It has been years of battling doctors and my health I just dont know what to do anymore.

Does my symptoms sound like perhaps gluten intolerance? Should I proceed with a gluten free diet and see what changes occur?

I am sorry for posting such a novel. I am just really lost and fed up to be honest. Dont know who to talk to. :(

Thankyou.

Tam. :)

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I'm lost and confused about what to do and how to go about this.

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Sep 07, 2011
 Just go for it - gluten free is best
by: Anonymous

I really feel your frustration. I went through years of hell with the medical profession until one doctor finally accepted that I was gluten intolerant rather than a coeliac and sent me to the Coeliac Society for information to help me become gluten free.

I have not looked back and while I still have a few niggling complaints like sensitivity to sugar and yeast, I am doing well on the diet.

One doctor recently said that because I am not a coeliac I can try a low gluten diet. I briefly tried one very low gluten wrap and felt unusually tired that afternoon. Then I tried eating some corn chips and this time it was clearly a gastro issue. There is just no way I will return to eating it, even low gluten, after this !! I am definitely 100% gluten intolerant and have to be strictly gluten free.
Jul 17, 2011
 Thanks for your advice and opinions everyone.
by: Tam

Hello everyone.

Thanks for all your replies to my story. All your stories and advice have helped me alot.

My current situation is a little different now as I have been to see a Naturopath and had a Vega Test done. Google Vega Test and read up on it. Perhaps it may help you with allergies. I could not take modern medicines word anymore as all they have done is make me run circles and not listened to me as a person. We all know our bodies best right. They just thought I was making it all up. Vega Testing I know alot of people think its a load of poop but all that modern doctors did say,tests that showed slight problems the Vega test picked up also so I do know for me personally its true.

The Vega Test showed I do have a lactose Intolerance which my breath test (yes I did opt for getting the breath test and it picked up mid range intolerance to lactose). But the dietitian claimed I can live with it still having dairy. So I was supposed to be on a gluten,fructose diet but due to personal issues I kept not getting around to it. Alot of stress lately causes me to eat badly and not really care. :P

So the Vega Test showed my intolerance for lactose but also picked up slight intolerance to fructose and wheat. I have taken this as proof and to me its valid. As it picked up the lactose thing which was picked up by modern medicine and also the dietitian did say months before this that I may have an intolerance to fruit too but its difficult to pick up.

I am now on a wheat,fruit,sugar and dairy free diet. Also yeast free too but thats for another problem. I have to do this for 3 weeks to see if my levels drop but I know for sure I will most likely be dairy free for life. And am gluten free.

It's day 3 today and I feel like poop with all the withdrawals,it takes approx 3 weeks to feel the benefit or lack of.. So I am hoping this is my answer to a healthy life.

I never did have my stomach checked again for celiacs disease. Maybe if I do not get answers with this then perhaps I will again go see the doctor.. But I do not show symptoms of celiacs so hmm.

Thanks all... Tam. :)
Jun 21, 2011
 Good Luck
by: Anonymous

Hi Tam,

Eating gluten free can be a challenge. I have found that initially, the more your limit your diet, the easier it is to identify which items upset you. In my case i have problems with gluten, lactose (dairy) and fructose. Afterwards, you can start to extend the range of products you eat. Also, i would recommend that unless the item states that it is gluten free, don't risk it.

There are a few brands of gluten free products out there. A lot taste like cardboard, however there are few brands that i recommend.

A website I buy my gluten free goods from is www.foodtroubles.com.au. They sell Dr Schar products, which is Europe's no one range of gluten free goods. There postage can be a little expensive, however if you contact them they can sometime offer you a better deal.

Approximately 50% of people who have gluten problems have lactose problems. If you find that food with cream in it doesn't agree with you, then, lactose may also be an issue for you.

Good Luck
May 12, 2011
 I know its a nightmere!
by: PJ

I feel your pain!! I've been through a similair journey, I actually was tested for Celiac Disease, the first test came back negative as I wasn't eating much gluten. I was eating a bit!!

I had a gene test, it cost 100 buck and if positive only means you have a 40% chance of having the disease. But if it comes back as negative then you definately can't get it! So could be worth doing that.

Mine came back as positive and then I had to eat three slices of bread a day (gluten Rye Bread) for three months and get retested. Which showed up a high level of IGA things, not sure of the technical term.

I've been GF for about 6 months and I am feeling better, but still not 100% but enought to go about my normaly day to day business and work etc. So things are getting better slowly.

People don't understand when you say you have to eat GF they just thing, you just have to aviod the food, they don't realise even if you are not eating Gluten you still feel icky.

Good luck, wish you all the best. Your not alone.
Apr 30, 2011
 definately
by: Anonymous

my opinion is that you should defnately try a GF diet!
your symptoms are just like mine (Im 22, but my mum says Ive always shown symptoms, we just didnt know what it was).
My mum has officially been diagnosed as ceoliac. I had the blood test, which came back negative, so my doctor wont really accept that I believe Im intolerant as well.
I can tell you though from experience, dont listen to them, try the diet and see for yourself the differences. Its amazing. Although very tricky..I do often still finding myself giving into temptation, especially in social situations...but I pay for it afterwards = extremely tired, rashes, EXTREMELY itchy skin (so much so that I leave huge red scratches on myself from scratching), really bad 'hayfever' symptoms, and then the obvious stomach problems as well as weight gain and bloating..oh and extreme headaches!
wow after writing it down I dont know why Im not more strict with my diet..its been a long time since Ive felt 100% also.
I wish u all the best with it all..and any learnt/discovered tricks along the way would be greatly appreciated :)
Apr 28, 2011
 Keep at it
by: Ian

You sound a lot like me. I have so many of your symptoms, it's scary...

Key thing is - coeliac disease can't be determined until a small bowel biopsy is actually done.

But you mention that your blood test indications say that you don't have it... So this could be a problem in that a doctor probably won't recommend a biopsy on the back of that.

But! I think you need to push for it anyway!

My situation was this.

(1) Blood test returned a *low range* indication for coeliac.
(2) Biopsy went ahead anyay (this was key!)
(3) Surgeon after I woke up said "Your small bowel looks very healthy - unlikely you will have a problem"
(4) 3 weeks later - dropped into surgeons office for biopsy results. Small bowel villi imflamed and flat as a tack. I'm very much a coeliac.
(5) Surgeon admits that this happens from time to time, and that even though the bowel looks good visually, you aren't going to know for sure unless you take a sample and put it under a microscope!

I'm now on day 2 of my gluten free diet. Still uncomfortable - I think it's going to take a long time to recover, but I know for certain now what it is. The indications weren't clear. The biopsy was necessary to really be sure.

Push for it. Get that biopsy done!

Best of luck.

Ian.
Mar 21, 2011
 Biopsy of Small Intestine
by: Nadine

I am just wondering if you have had a biopsy of your small intestine as this is the only certain way of diagnosing Coeliac Disease, the blood tests are not always right. Perhaps a Coeliac Gene Test may be helpful too.
Mar 21, 2011
 Definately try it!
by: Anonymous

I am 22 years old and everything you have described is my life exactly.
My mum says from the age of about two I always had big dark circles under my eyes. My allergies or 'hayfever' used to be so bad that every morning I would spend up to half an hour sneezing,and would get huge sore,red welts on my legs. My eyes used to get so itchy that I once rubbed them so hard I actualy scratched the surface of my eye,and I used to fall asleep in class,in both primary and high school (no matter how much sleep I'd had) .

I have also always suffered from severe headaches which lead to migraines,and this got to it's peak in year twelve when I also got glandular fever. I would suddenly start crying because I couldn't take It anymore. I when to an allergist who made me have a needle every week to build up a tolerance to my allergies of dust,but that didn't help much either.

Then a year after finishing school my mum was diagnosed as cioliac,and the specialist told her that it often runs in the family,and after doing some research she started me of the GF diet as well. The difference of after a few weeks was amazing to say the least!! Headaches are very few,allergies hardly exist at all,I may still be tired sometimes,but as you said,not to the point of no return.
My doctor won't accept that I have these symptoms because of gluten,because as you said my blood test came back negative (but I've read many times that this happens quite regularly),and I dont see the point in doing the specialist tests at the hospital,because I know when I don't eat gluten,these symptoms lesson,or disappear all together.

To this day,I am not very good at following a completely gluten free diet,it's so hard,especially with eating at the in laws house etc,because it's so hard for people who don't suffer to understand...but after reading your story,I do believe that if you tried it out for a few weeks,you would notice a dramatic change within your body
Mar 21, 2011
 Feeling Ill From Gluten?
by: GFA

Hi,

You sound a lot like me when I was 21. Ever since I got glandular fever at university my health seemed to be very poor, I was at the doctor every other month with skin infections, colds, sinus problems, ezcema, stomach ulcers and so on.

Physically I do not have celiac disease although my gluten antibodies and skin prick test showed a sensitivity.

They real test was going on a low stress diet for 6 weeks (at age 23) and feeling AMAZING.

The basic idea of a low stress diet as you ditch anything processed and start thinking like a caveman. You eliminate all of the foods that can stress out your body and eat thinks like lamb, vegies, salmon, fish, salads. Then after 3 weeks start to add in stress foods one at a time every 2-3 days like sugar, potatoes, rice, eggs, wheat, dairy.

You will soon know if something is causing you discomfort or tiresness.

I look at my allergies as my bodies way of telling me something is not right. They say you are what you eat and this is true.

Personal I have discovered I am gluten intolerance, Sensitive to dairy (gives me cold n flu symptoms, sinus problems and I feel like I catch the flu everytime I eat it), and if I eat more sugar then I normally would I am prone to candadiasis.

So how do I live with it you ask?

Avoid packaing where possible. Consider food is fuel and that lollies, biscuits, soft drinks and takeaways are not everyday foods. Try to have half my plate filled with vegies, quarter with meat, and quarter with starch when I make my dinner.

Its also great for your waist line.

If I can give you two tips.:
Always toast gluten free bread from frozen (otherwise it tastes like sand)
Use iceburg lettuce as a wrap instead of corn/flour wraps, this way its less calorie, has a fresh crunch and a fun way to make your lunch.

* This is based on my own experience and is in no way meant to replace the advice of a health professional - just thought it might help to hear about my diagnosis and diet.

Awesom cookbook that would work with the low stress diet

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