New Here

[Joss]

Hello I am new here and currently I am eating gluten containing foods after being gluten free for over 3 months. This is necessary to undergo more blood tests. I don't want to have an endoscopy because I am an asthmatic. After just 2 days, my tummy is so distended I cannot do up my pants, I am wheezing slightly, my nose is running, you certainly don't want to stand downwind from me and I had a headache today as well.

In other words I am wondering if it's worth it.

All my life I have struggled with gastric problems. However my problem is bloating, constipation, migraine headaches and excema. At 66 years of age I burp louder than most males and I have no control over them. A couple of years ago I tested positive in an IGa blood test, but my doctor told me to ignore it as it wasn't relevant.

I have always had a problem with nutrient asorption and my iron levels are always low. My doctor thinks that my veganism is too blame for this and the fact that I have severe osteoporosis. Now I have been searching for a new doctor that is interested in this and not just my lung problems.

I read somewhere somewhere on this site that it takes weeks or even months for enough gluten to show up in the blood. I actually eat more iron containing foods than most meat eaters. I also take an iron supplement for good measure.

Right now I feel so tired I'm not sure I can keep it up for even a week.

Joss

[Fiddle-Faddle]

First of all, your doctor is wrong about the test being irrelevant. Sounds like you already have confirmation of a problem with gluten just from the bloodwork, not to mention the diet.

Unless there is something else he is specifically looking for in an endoscopy, I see no reason to intentionally poison yourself and damage your body to satisfy his curiosity and pad his bank account.

Osteoporosis is a natural effect of celiac--if you are unable to absorb nutrients, your bones don't get enough calcium. Unfortunately, most vegan diets rely heavily on wheat, rye, barley, and oats--all the grains you can't have!

There are several old threads here on vegan diets and celiac here. If you do a search, you might find some good diet suggestions from people who've "been there."

In your shoes, I would go gluten-free today and find another doctor, preferably one who is a celiac specialist. Who knows how much damage resulted from your idiot doctor's telling you to ignore the test that proved you have celiac????? I'm not sue-happy like some, but your case has "malpractice" written all over it.

Best of luck, and please keep us posted!

[scotty]

First of all, your doctor is wrong...

i agree. you can only prolong your symptoms and extend your road to recovery (not to mention your raunchy gas ). i'm only saying this because i been sick my whole life and 5 years ago i finally started paying attention to it. i was so messed the doctor wanted to do innumerous tests which all led to nothing. i got an endoscopy by a GI specialist that told nothing (at least thats what they told me) and i had never went gluten free nor had i ever heard of such a term let alone have it even mentioned as a possibility by them!!! i'd say he's very concerned about it though; i'm sure your doctor is quite in dire straits (jerks)

[Joss]

Thank you Scotty and Fiddle-faddle for your replies. My family think I am mad and just looking for illnesses on the net. Because I keep a lot of this stuff to myself they don't realise the problem is serious. My grandkids like the loud burping, which they see as cool. It seems that even farting is "in" these days too.

I am going back to a gluten free diet and forgetting about the testing. The problem is that my regular doctor suddenly closed down and the first I knew about it was my medical records arrived with a letter telling me she was no longer practising. Now I have to find a replacement doctor and they all want to redo the tests. I live in Australia and because I am a senior, all tests are free.

I have just remembered why the Functional Health doctor dismissed the IgA tests. This was because my IgG test was negative. She said that both tests needed to be positive, but did not elaborate on this statement.

Anyway it's nice to be among friends.

Joss

[Shotzy1313]

Im surpised I am not seeing more people mentioning a biopsy. I was told by my doctor, who is very good, that only way to know for sure that you have celiac is a biopsy. Treatment is the diet.

[Joss]

Im surpised I am not seeing more people mentioning a biopsy. I was told by my doctor, who is very good, that only way to know for sure that you have celiac is a biopsy. Treatment is the diet.

Here in Australia the main celiac support association will only accept you if you have had a positive biopsy. As I said before I really do not want to go down that path unless it's really necessary. I have already had a good experience with a gluten free diet.

Jocelyn

[Guest Doll]

Here in Australia the main celiac support association will only accept you if you have had a positive biopsy. As I said before I really do not want to go down that path unless it's really necessary. I have already had a good experience with a gluten free diet.

Jocelyn

Normally I advocate for a biopsy in adults for multiple reasons, but it is always a personal choice. In your case, if you feel better on the diet, and don't need an official dx, then by all means stay on the diet and leave it at that.

While there ARE benefits to an offical dx (i.e. tax benefits for gluten-free food, gluten-free meals and medication during hospital stays, etc.), these may or may not be worth it for you.

For me, since I am so sensitive and react so severely to gluten, it is very important that my dx is on my chart (I have it on my Medic Alert as well, so no one can miss it...lol!) in the event that I am admitted to hospital. I also find that here in Canada, claiming my gluten-free food on my taxes has really helped. However, these are not a concern for some.

The bottom line is this, if you feel better gluten-free and do not want to chance any further testing, then stay on the diet. The only thing I would suggest is to follow up with a doctor just to make sure nothing else is going on. This is really important, especially if your symptoms return, get worse, or you develop new symptoms.

Hope you keep feeling better!

P.S. If "Burping" is in, I am so far in I am out. Lol! My fiance and I always laugh about how little petite me can outburp anyone! And yes, we laugh like 5 year olds. Apparently I have a "spastic colon" due to Celiac according to my GI. I can't believe I just admitted to that.... It's the one thing that never cleared up going gluten-free. Eh...makes for good laughs....

[Fiddle-Faddle]

Im surpised I am not seeing more people mentioning a biopsy. I was told by my doctor, who is very good, that only way to know for sure that you have celiac is a biopsy. Treatment is the diet.

The biopsy is unfortunately a very inaccurate way to diagnose celiac. Sure, IF they find damaged villi, it's a no-brainer positive diagnosis--but you have 22 feet of intestine, they take 6 one-half inch samples, and villi damage is often patchy and not visible to the naked eye. That gives you something like a 1 in 22,000 chance of their biopsying an affected patch if you do have villi damage but your damage is patchy.

The only reasons doctors are still clinging to this as the "gold standard" of diagnosis are either pure ignorance or greed--they make thousands of dollars for each endoscopy performed, no matter what the results.

[darlindeb25]

While there ARE benefits to an offical dx (i.e. tax benefits for gluten-free food, gluten-free meals and medication during hospital stays, etc.), these may or may not be worth it for you

.

To begin with--here in the US, this isn't true--tax benefits are very hard to come by just because you are celiac. I was in the hospital, the doctor knew I was celiac, the nurses knew, it was on my dietary chart and still, they would bring me medication and have no knowledge as to whether it was gluten free or not, they told me to bring my own medication with me, just to be safe and the pharmacy would verify it was what it says, then the pharmicist tried to change it on me and give me something else, I fought that and got mine back---the point being, THEY ALL KNEW!!!

As for eating some gluten for testing..........I was at a talk with Dr. Peter Green just last week, if you do not already know, Dr. Green is one of the top 5 celiac specialists in America and he says, you must eat what would equal 4 slices of bread a day for 3 months to get enough gluten to be retested and he really doesnt think the blood testing is all that accurate unless you are testing for the genes.

He was telling us about endoscopies and how so many are misread. He said they had a patient who brought several copies of his endo's with him from another doctor and this doctor had told him each time that he was doing great, everything looked good and Dr. Green said each and every endoscopy showed flattened villi! Sad huh, this guy's doc had no idea what he was looking at and this poor guy had celiac disease all along, for years! Makes you wonder how often that has happened to so many here! We are at the mercy of those who really do not know what they are doing, it's really very sad.

[ravenwoodglass]

You IMHO have already been diagnosed in the most accurate way possible. You did a gluten free diet and got relief, you then added gluten back in and have had a reaction. That is a valid way of diagnosing but of course the doctors don't make any money off of that. It is called a gluten challenge by allergists and it was the way I was finally diagnosed after years of negative bloodwork. I have a great deal of permanent damage because I did not show up in the blood work and was close to death by the time I made it to the allergist. Don't let them do the same to you. You now know your body does not want this toxic substance, IMHO you should listen to it.

[Joss]

Thank you all for your replies. I am still suffering various symptoms from the gluten challenge. Like many of you I have multiple allergies, and other ailments that point to a gluten problem. Since my first asthma attack came at 14 months, the time I was weaned and has continued all my life, I think there is a fair chance that gluten containing foods are not doing me any favours.

When I was slightly older, my mother was told I was attention seeking and 'throwing' asthma attacks for attention. Nothing was said about my mothers chain smoking. However, I was taken to an allergy specialist and put on a dairy fee diet. I was/am also allergic to fish and rabbitts as well as chocolate. Chocolate has always triggered migraines for me.

Funnily enough I have only been gluten free for less than three months. I had stayed off bread before, but this time I am reading labels looking for hidden gluten. I was amazed because my blocked ears cleared up after being stuffed for over 12 months, even while avoiding wheat. The first symptom I noticed when I ate some bread was that my ears were blocked again. Now let my doctor tell me that food has nothing to do with blocked ears.

I am not sure about the tax benefits here either. Years ago I was told that the hospital would/could not pander to my choice of vegetarian food. Now of course, they have to provide vegetarians with their diet as many adopt this way of eating as a religious practise. It seem that there are benefits in multiculturalism after all.

Joss

[JNBunnie1]

I agree with revenwoodglass, Joss, the most accurate way of testing someone is to see if they feel better gluten-free. You got sick when you had it again, that has been enough for me, I'm not officially diagnosed.

[Joss]

I agree with revenwoodglass, Joss, the most accurate way of testing someone is to see if they feel better gluten-free. You got sick when you had it again, that has been enough for me, I'm not officially diagnosed.

I detect a touch of elitism between those who have had an 'official' biopsy taken, against those who have some other form of diagnosis. Here cannot join the local Aussie celiac support group because I am not having a biopsy.

joss

[deetee]

Go with your gut feelings. as far as i'm concerned you made the diagnosis. Did i tell you i am a doctor and listen to my story. i was diagnosed at age 3 in 1970, when they new very little about it and it was impossible to find gluten free foods. they told my mother to keep me on a gluten free diet for one year and then they slowly reintroduced it back into my diet. and that was it, however throughout my life i have been severely anemic. each time they would explore other diagnoses but no one revisited the celiac. i felt fine. my main symptom was the anemia. my bowel movements were irregular much like a persons with irritable bowel, but it had been my whole life. about 5-7 years ago celiac really hit the medicine scene with lots of info, however still alot of doctors are ignorant. i chose to ignore things, even told myself maybe the diagnosis was wrong it was after all only 1970 they didn't have any specific tests for it. i am turning 40 in 2 months i decided to get healthy and i revisited the issue. i had my upper endoscopy and biopsies and they were positive. from there things just went downhill. my bone density was terrible, after all i was malnourished my entire life. i am not sure why i felt so normal when so much was going on. i also just recently found i have hyperparathyroidism, we are still working on whether it is secondary or primary. well i am now on a gluten free diet and wish i had been my whole life. i hope i am around to see my children grow up, and you bet i am gene testing them deetee

[Joss]

Go with your gut feelings. as far as i'm concerned you made the diagnosis. Did i tell you i am a doctor and listen to my story. i was diagnosed at age 3 in 1970, when they new very little about it and it was impossible to find gluten free foods. they told my mother to keep me on a gluten free diet for one year and then they slowly reintroduced it back into my diet. and that was it, however throughout my life i have been severely anemic. each time they would explore other diagnoses but no one revisited the celiac. i felt fine. my main symptom was the anemia. my bowel movements were irregular much like a persons with irritable bowel, but it had been my whole life. about 5-7 years ago celiac really hit the medicine scene with lots of info, however still alot of doctors are ignorant. i chose to ignore things, even told myself maybe the diagnosis was wrong it was after all only 1970 they didn't have any specific tests for it. i am turning 40 in 2 months i decided to get healthy and i revisited the issue. i had my upper endoscopy and biopsies and they were positive. from there things just went downhill. my bone density was terrible, after all i was malnourished my entire life. i am not sure why i felt so normal when so much was going on. i also just recently found i have hyperparathyroidism, we are still working on whether it is secondary or primary. well i am now on a gluten free diet and wish i had been my whole life. i hope i am around to see my children grow up, and you bet i am gene testing them deetee

Detee I have severe osteoporosis and very low iron levels too. I have had asthma from 14 months and this is the main reason I don't want an endoscope done as I am nervous about the GA. I started getting migraines around 18, Graves Disease around 35 and just recently I was diagnosed with RSD (CRPS) I have balance problems associated with vertigo. All this leads me to believe that I have a gluten tolerence problen and I have had it for sometime as my indigestion has been long standing. However as I am older, everyone just thinks osteoporosis naturally comes with old age.

[ravenwoodglass]

Detee I have severe osteoporosis and very low iron levels too. I have had asthma from 14 months and this is the main reason I don't want an endoscope done as I am nervous about the GA. I started getting migraines around 18, Graves Disease around 35 and just recently I was diagnosed with RSD (CRPS) I have balance problems associated with vertigo. All this leads me to believe that I have a gluten tolerence problen and I have had it for sometime as my indigestion has been long standing. However as I am older, everyone just thinks osteoporosis naturally comes with old age.

Joss I think you are going to be amazed at how much the diet helps you. I used to have migraines on a daily basis, sometimes with pain sometimes with just the auras (my aura oddly enough is olfactory and I will smell bread baking even now). The only time I get migraines now is when glutened. I also have gluten ataxia (previously labeled with the idiopatic ataxia label even though my MRI clearly showed the white spots associated in other countries with celiac, here in the US they just shrug their shoulders). The ataxia had greatly resolved gluten free, enough for me to walk freely and now that I have cut out soy after 5 years gluten-free almost all ataxia is totally gone. I can't tell you how good it feels to be able to just get up on a chair and change a light bulb, a simple thing but before I had to call someone else to do it because I would lose balance just changing my focus. If you want to hurry away that RSD make sure you are taking a SUBLINGUAL B12, even if the doctors say you are in normal levels. This will help the nerve issues contributing to the balance and the RSD resolve. Also just in case it hasn't been mentioned before, make absolutly certain any med they have you on is gluten free. The labeling laws do not include meds and they can pull whatever starch they want as a filler. The generics are the most risky as their formulas can change 'inactive' ingredients at will but the name brands have to use the same formula until their patent runs out.

[Joss]

If you want to hurry away that RSD make sure you are taking a SUBLINGUAL B12, even if the doctors say you are in normal levels. This will help the nerve issues contributing to the balance and the RSD resolve.

RavenWG I live in Australia and sublingual B12 isn't sold here, or at least I can't find any. I seem to have some B12 symptons with tingling, numb patches and cramps. Blood tests seem normal though. I also get a bit of brain fog. As you get older you tend to worry about that. I have a theory that a lot of elderley people actually have B12 deficiency.

Funny thing is I sneeze everytime I pass a baker's shop. In fact I sneeze a lot these days. I focus on my health and I try to do the best I can in all areas of my life. My daughter just rolls her eyes whenever I mention going gluten free. She has RSD and does not believe that a diet can help in any way.

[Joss]

Joss I think you are going to be amazed at how much the diet helps you. I used to have migraines on a daily basis, sometimes with pain sometimes with just the auras (my aura oddly enough is olfactory and I will smell bread baking even now). The only time I get migraines now is when glutened. I also have gluten ataxia (previously labeled with the idiopatic ataxia label even though my MRI clearly showed the white spots associated in other countries with celiac, here in the US they just shrug their shoulders). The ataxia had greatly resolved gluten free, enough for me to walk freely and now that I have cut out soy after 5 years gluten-free almost all ataxia is totally gone. I can't tell you how good it feels to be able to just get up on a chair and change a light bulb, a simple thing but before I had to call someone else to do it because I would lose balance just changing my focus. If you want to hurry away that RSD make sure you are taking a SUBLINGUAL B12, even if the doctors say you are in normal levels. This will help the nerve issues contributing to the balance and the RSD resolve. Also just in case it hasn't been mentioned before, make absolutly certain any med they have you on is gluten free. The labeling laws do not include meds and they can pull whatever starch they want as a filler. The generics are the most risky as their formulas can change 'inactive' ingredients at will but the name brands have to use the same formula until their patent runs out.

Great news! I found some sub-lingual B12 tablets today. these are made by Herbs of Gold and state on the bottle that they are gluten, vegan and dairy free, whoopee!

[ravenwoodglass]

RavenWG I live in Australia and sublingual B12 isn't sold here, or at least I can't find any. I seem to have some B12 symptons with tingling, numb patches and cramps. Blood tests seem normal though. I also get a bit of brain fog. As you get older you tend to worry about that. I have a theory that a lot of elderley people actually have B12 deficiency.

Funny thing is I sneeze everytime I pass a baker's shop. In fact I sneeze a lot these days. I focus on my health and I try to do the best I can in all areas of my life. My daughter just rolls her eyes whenever I mention going gluten free. She has RSD and does not believe that a diet can help in any way.

When you say RSD are you referring to Reflex Sympathic dystrophy (sp)? I had this set in after knee surgery and it is very painful. If you can get her to take some of the sublingual B12 please do, I don't know if it will help but it won't hurt. I had a wonderful PT that helped with mine. They did excercises, heat and ice and electrical stimulation to help in my recovery. I was not gluten free yet when I went through the process and had severe celiac related neurological issues which included loss of reflexes, feeling and movement in my legs that had been progressing since I was 4 years old. I was thought to have MS for quite a bit. Within 2 years gluten-free I had reflexes back but after only six months I could walk freely again without canes. It is not surprising that that you DD is sceptical about the diet, if you can get her to spend an afternoon visiting us here so she can see the multitude of systems impacted and the amazing recovery so many of us have had in seemingly unrelated problems perhaps that might open her eyes.

[Joss]

RSD is now called Complex Regional Pain Syndrome and she has had it for over 5 years now. She was slightly injured in a MVA and her injuries resulted in RSD. I also delepode RSD after breaking my wrist, but after a lot of hard work in the hydrotheraphy pool, it went away leaving me with just a few symptoms.

She does not want to know about anything like this. Sadly her daughter has recently developed epilepsy and I would love to suggest that she at least has a serum test to rule out celiac disease. However I don't want my head bitten off so I shall keep quiet about it.

Oh and about the sub-lingual B12. I have now taken 2 tablets and each time I flush straight after taking them and my throat feels tight. I shall email the supplier and stop taking them until I hear back from them.

Joss

[ravenwoodglass]

Oh and about the sub-lingual B12. I have now taken 2 tablets and each time I flush straight after taking them and my throat feels tight. I shall email the supplier and stop taking them until I hear back from them.

Joss

Joss that sounds like an allergic reation, do email the makers and find out what the binders are that they use. I noticed the ingredients you listed do not state soy free, many of us have problems with soy so that may be the culprit. Don't give up on the B12 though, find out what the ingredients are and whether it is just B12 or whether it has an herbal ingredient or two thrown in. There may be a different brand available. Also may places will take a return even on an open bottle if you have an allergic reaction to the product so perhaps at least you will not have wasted your money.

[JustJust]

JOSS,

I WAS DIAGNOSED WITH RSD! NOT MANY EVEN KNOW WHAT THAT WAS, SO I WAS EXCITED TO SEE THAT YOU HAVE IT TOO. TOO BE HONEST WITH YOU NOW THAT I FOUND OUT I HAVE CELIAC (3 MOS.) AGO, I AM NOT SURE THAT I REALLY HAVE RSD? MY PAIN LEVELS HAVE GREATLY IMPROVED IN THE PAST THREE MONTHS. I WAS AT THE POINT THAT I WAS WHEELCHAIR BOUND FOR 4 MONTHS. THE PAIN WAS HORRIBLE AND NO ONE THOUGHT TO CHECK MY BLOOD WORK AGAIN OR LOOK INTO THE FACT THAT I HAVE BEEN ANEMIC FOR YEARS. THE ONLY REASON THEY FOUND OUT ABOUT MY SEVERE OSTEOPOROSIS AT THE AGE OF 27 IS BECAUSE THEY WERE SAYING A BONE SCAN WAS NEEDED FOR THE RSD. WELL THE RSD WAS IN MY LEGS AND NOW THE SCAN CAME BACK SAYING OSTEOPOROSIS IN MY HIP AND SPINE, WHICH LED TO BLOOD TESTING OF MY VIT D. ENDS UP MY VIT. D WAS SO LOW BECAUSE OF THE CELIAC.

HOW LONG HAVE YOU BEEN GLUTEN FREE. MOST OF MY RSD SYMTPOMS HAVE GONE AWAY EXCEPT FOR THE COLDNESS IN MY FEET. THEY STILL GET ICE COLD AND PURPLE SOMETIMES. BUT THE PAIN, OH MY HAS THE PAIN IMPROVED. I AM NOT 100% BACK TO NORMAL BUT AM PRAYING WITH MORE TIME ON THE gluten-free DIET I WILL START FEELING BETTER.

HOW WERE YOU DIAGNOSED WITH RSD? WHEN? i AM VERY INTERESTED TO HEAR ABOUT IT, IF YOU WOULD LIKE TO SHARE! THANKS, JUSTINE

[Joss]

JOSS,

I WAS DIAGNOSED WITH RSD! NOT MANY EVEN KNOW WHAT THAT WAS, SO I WAS EXCITED TO SEE THAT YOU HAVE IT TOO. TOO BE HONEST WITH YOU NOW THAT I FOUND OUT I HAVE CELIAC (3 MOS.) AGO, I AM NOT SURE THAT I REALLY HAVE RSD? MY PAIN LEVELS HAVE GREATLY IMPROVED IN THE PAST THREE MONTHS. I WAS AT THE POINT THAT I WAS WHEELCHAIR BOUND FOR 4 MONTHS. THE PAIN WAS HORRIBLE AND NO ONE THOUGHT TO CHECK MY BLOOD WORK AGAIN OR LOOK INTO THE FACT THAT I HAVE BEEN ANEMIC FOR YEARS. THE ONLY REASON THEY FOUND OUT ABOUT MY SEVERE OSTEOPOROSIS AT THE AGE OF 27 IS BECAUSE THEY WERE SAYING A BONE SCAN WAS NEEDED FOR THE RSD. WELL THE RSD WAS IN MY LEGS AND NOW THE SCAN CAME BACK SAYING OSTEOPOROSIS IN MY HIP AND SPINE, WHICH LED TO BLOOD TESTING OF MY VIT D. ENDS UP MY VIT. D WAS SO LOW BECAUSE OF THE CELIAC.

HOW LONG HAVE YOU BEEN GLUTEN FREE. MOST OF MY RSD SYMTPOMS HAVE GONE AWAY EXCEPT FOR THE COLDNESS IN MY FEET. THEY STILL GET ICE COLD AND PURPLE SOMETIMES. BUT THE PAIN, OH MY HAS THE PAIN IMPROVED. I AM NOT 100% BACK TO NORMAL BUT AM PRAYING WITH MORE TIME ON THE gluten-free DIET I WILL START FEELING BETTER.

HOW WERE YOU DIAGNOSED WITH RSD? WHEN? i AM VERY INTERESTED TO HEAR ABOUT IT, IF YOU WOULD LIKE TO SHARE! THANKS, JUSTINE

Justine I broke my wrist in 2005 after slipping on some gravel. My legs sliiped out from under me and I landed palm dowm on my bottom. I fractured my wrist but as I was in an area that did not have a hospital the local health care centre put it in a cast and I waited 4 days before I saw my doctor. She sent me to the local trauma unit and they put it in a cast. The cast was very tight and after a week or two I started getting strong pain. Now at age 63 this was my first ever broken bone. I had heard of people complaining about their casts and though it was normal. It was only after they took the cast off that I realised the pain was getting worse, not better. Because my daughter has severe RSD and is confined to a wheelchair, they waived the 18 months waiting list and got in into the hospital's pain clinic immediately. My rsds pain issues have resolved after 2 years hard work in a pool, but I still have the neurological changes in colour, temperature and also sheath thickening in the palm of my hand. I have just recently gone on a gluten-free diet and I am also on a CF diet for asthma. I ahve had digestive problems for years. My other complaints are Graves Disease (resolved) osteoporosis, asthma, chronic low iron issues, migraines, cramping in toes and legs, large purple bruising on arms and depression.

Sounds like gluten issues to me. I had a positive IgA serum test that my doctor dismissed as not important in 2001. Luckily for me I have not eaten any overt wheat products for years, because I instinctively knew they were not good for me.

Cheers, Joss

[Joss]

Ok I went to see my new doctor today, but somehow the appointment was made with the test mad idiot doctor instead. Now my regular doctor for some reason abruptly closed down her practise without notice earlier this year. The first I knew about it was when I received my medical records in the mail. Now of course I am left shopping for a doctor that knows nothing about my history.

Anyway I went because I want to join the local Celiac Society and they require my doctors signature. So off I went only to find I was stuck with this guy. First after telling him of the misunderstanding, I explained why I was there. He again wanted to send me for blood tests. I veoted this by telling him I had been restricting gluten for sometime. He still insisted that there would be enough antibodies to test.

I again declined. Then he wanted to know when my first tests were carried out. I was able to tell him the name and address of the doctor my mother consulted in 1953. No good of course, so then I told him I was being treated in Tasmania, but I could not remember the name of the specialist, or even my local GP as that was about fifteen years ago. Anyway that practise too has now closed. I could remember the name of my naturopath but it seems they are not counted as being true professionals. So now unless I can produce enough evidence to prove my gluten intolerence I cannot join the local support group. Makes you wonder why thaey are called a support group and why they are being elitist?

Of course I thought that the doctors could check my blood tests and recognise that I have chronic iron defiencies that remain the same over several years and that they are treating me for osteoporosis and that might be enough. But no, now I have to remember who performed that vital test.

Joss

[loco-ladi]

OK, first off I got tired of fighting with my doctors and just went on the diet, no blood tests, no biopsies, and I feel great thats enough for me, for some its not....

My question for joss is..... Is the pain and discomfort really worth it to join this "Aussie celiac support group"?

Question #2 is.... if you aren't on gluten long enough before they retest and it turns out negative what then? eat more poison and hope the doctor will retest you again?

Its your life and you can do what you want, but look at the long term here, just how important to you is this support group?