Just Diagnosed. Confused And Curious!

[wook]

I just received results from tests that say I have Coeliac disease. And I'm left feeling mighty confused. I've been trying to research and seek answers to my questions, but I think its just making me MORE confused. And knowing the great power of internet forums, here I am. I do apologise if I ask questions that should have obvious answers, but I really just can't make sense of everything I'm reading, and need some experienced opinions!

History:

I'm 24, male, healthy, a bit above average fitness. Besides the occasional stomach bug, I've had great digestive health for all my 24 years.

Recently (about 5 weeks ago), I got very sick after a family bbq (beef sausages). I was the only one to get sick, and after about 18 hours of diarrhea and some intense vomiting during the night, all was fine.

About a week later, I ate red meat again (steak) and then got sick again.

About another week later, I tried some sausages and again, I got sick!

Over the course of the last 5 weeks I've had an "upset stomach", but no gastro symptoms at all unless I've eaten red meat.

Being quite confused i went to the doctor. I was thinking along the lines of food poisoning. He did all sorts of tests, but the only one that came back positive was for coeliac disease. Which surprised me because in the last 5 weeks I've eaten a lot of gluten containing food, and haven't been at all sick from it. Its only when I've eaten red meat that I've had big issues.

So, if you are able, can you please interpret these results for me, and also answer a few questions...

RESULTS:

Gliadin IgG 24 units (<20)

Endomysial Antibodies POSITIVE

Total IgA 3.44g/L (0.69-3.09)

Transglutaminase IgA Ab 22 U/ml (<7)

Questions:

1. Is it possible that I have some other issue? I can eat as much bread and as many cookies as I want without problem. It's only red meat that makes me sick.

2. Gluten is even in things like soy sauce that my family sometimes uses for marinades. I can't imagine there is THAT much gluten in it, but it IS there. Can even the occasional, tiny amount of gluten undo any progress made from a gluten free diet? ie, how strict do I REALLY have to be with gluten free? How much damage can a small amount do to me?

3. If I don't react to gluten, how am I supposed to measure the results of eating gluten free? (this I am most confused about. Gluten does not give me digestive issues and as far as I can tell I'm not lethargic and anemic etc)

[ravenwoodglass]

Questions:

1. Is it possible that I have some other issue? I can eat as much bread and as many cookies as I want without problem. It's only red meat that makes me sick.

2. Gluten is even in things like soy sauce that my family sometimes uses for marinades. I can't imagine there is THAT much gluten in it, but it IS there. Can even the occasional, tiny amount of gluten undo any progress made from a gluten free diet? ie, how strict do I REALLY have to be with gluten free? How much damage can a small amount do to me?

3. If I don't react to gluten, how am I supposed to measure the results of eating gluten free? (this I am most confused about. Gluten does not give me digestive issues and as far as I can tell I'm not lethargic and anemic etc)

1. When celiac blood tests are positive they are positive. They are pretty specific to celiac disease.

2.Celiac is autoimmune. Your body is making antibodies that attack your own tissues as a reaction to gluten. You need to cut out all gluten, even the small amount in soy sauces and the barley malt commonly found in cereals will keep the antibodies active.

3.Chances are once you have been gluten free for a short time you will start feeling a reaction if you accidentally get gluten in your system. Some of us don't but that doesn't mean you need to be less careful. In folks that don't have symptoms, silent celiac, the blood tests can be useful in checking that no gluten is sneaking in. With no gluten your blood tests will go down to normal levels.

You do need to do a few things, first make your family aware of the diagnosis because all first degree relatives should be tested whether they have symptoms or not. You will need your own toaster, new colander for straining gluten-free pastas, you will also need seperate condiments, nut butters, jellies etc. Even a crumb can keep the antibodies active.

You may notice a bit of moodiness when you are first gluten free as some of us will go through withdrawl. This will pass. For fastest healing do go with as much whole unprocessed food as you can. Reactions from gluten can be delayed so the sickness you feel one day may not be from something you just ate but from something you ate 2 or 3 days ago. Ask any more questions you need to.

[wook]

1. When celiac blood tests are positive they are positive. They are pretty specific to celiac disease.

2.Celiac is autoimmune. Your body is making antibodies that attack your own tissues as a reaction to gluten. You need to cut out all gluten, even the small amount in soy sauces and the barley malt commonly found in cereals will keep the antibodies active.

3.Chances are once you have been gluten free for a short time you will start feeling a reaction if you accidentally get gluten in your system. Some of us don't but that doesn't mean you need to be less careful. In folks that don't have symptoms, silent celiac, the blood tests can be useful in checking that no gluten is sneaking in. With no gluten your blood tests will go down to normal levels.

You do need to do a few things, first make your family aware of the diagnosis because all first degree relatives should be tested whether they have symptoms or not. You will need your own toaster, new colander for straining gluten-free pastas, you will also need seperate condiments, nut butters, jellies etc. Even a crumb can keep the antibodies active.

You may notice a bit of moodiness when you are first gluten free as some of us will go through withdrawl. This will pass. For fastest healing do go with as much whole unprocessed food as you can. Reactions from gluten can be delayed so the sickness you feel one day may not be from something you just ate but from something you ate 2 or 3 days ago. Ask any more questions you need to.

How will I know when my body starts to improve if I don't show symptoms?

How long will it take for any existing damage to repair itself?

Once everything is fixed (ie, no gluten then no anti-bodies attacking, damage repaired), can even one bread crumb undo all the hard work? Or will my body be able to process SOME gluten?

What is likely to happen if I don't go gluten free? I know it can cause long term damage of sorts?

Is there any chance the test results could be a false positive? (ie, I'd been sick, could something other than coeliac disease have caused the results?)

[JonnyD]

I'm a 37 yr old guy and have been Gluten Free for 2 months. I got a couple books on Celiac (gluten-free Diet by Elisabeth Hasslebeck and Dangerous Grains) from the library and found that reading about what celiac really means helped me a lot. There's a lot of advice on this blog but it's up to you to accept the diagnosis first. The book by Hasslebeck is a pretty light read. She describes how some people's celiac gets 'activated' or triggered later in life by some event. Others are born with it. Lots of people have it and don't know and just accept that's how life is for them.

As for me, I'm fit and have been a competitive runner for years. And my 'digestive health' was fine for years too... or so I thought. There are a lot of 'silent' celiacs who don't have over the top symptoms.

Yes, the tests are accurate. If you have it (positive results), then you really have it. When you understand what it does to your body, even 'just a little' isn't good.

I think of myself as lucky for knowing that I'm celiac and able to do what's best for my body by not eating gluten.

[aking3028]

I was very confused and overwhelmed at first also. The thing that I found helped the most was a book called "Gluten free for Dummies". It is very informative and talks in normal people terms not in a lot of medical terms. This forum is wonderful for any questions you have. People are very helpful on here

[GlutenFreeManna]

I just received results from tests that say I have Coeliac disease. And I'm left feeling mighty confused. I've been trying to research and seek answers to my questions, but I think its just making me MORE confused. And knowing the great power of internet forums, here I am. I do apologise if I ask questions that should have obvious answers, but I really just can't make sense of everything I'm reading, and need some experienced opinions!

History:

I'm 24, male, healthy, a bit above average fitness. Besides the occasional stomach bug, I've had great digestive health for all my 24 years.

Recently (about 5 weeks ago), I got very sick after a family bbq (beef sausages). I was the only one to get sick, and after about 18 hours of diarrhea and some intense vomiting during the night, all was fine.

About a week later, I ate red meat again (steak) and then got sick again.

About another week later, I tried some sausages and again, I got sick!

Over the course of the last 5 weeks I've had an "upset stomach", but no gastro symptoms at all unless I've eaten red meat.

Being quite confused i went to the doctor. I was thinking along the lines of food poisoning. He did all sorts of tests, but the only one that came back positive was for coeliac disease. Which surprised me because in the last 5 weeks I've eaten a lot of gluten containing food, and haven't been at all sick from it. Its only when I've eaten red meat that I've had big issues.

So, if you are able, can you please interpret these results for me, and also answer a few questions...

RESULTS:

Gliadin IgG 24 units (<20)

Endomysial Antibodies POSITIVE

Total IgA 3.44g/L (0.69-3.09)

Transglutaminase IgA Ab 22 U/ml (<7)

Questions:

1. Is it possible that I have some other issue? I can eat as much bread and as many cookies as I want without problem. It's only red meat that makes me sick.

2. Gluten is even in things like soy sauce that my family sometimes uses for marinades. I can't imagine there is THAT much gluten in it, but it IS there. Can even the occasional, tiny amount of gluten undo any progress made from a gluten free diet? ie, how strict do I REALLY have to be with gluten free? How much damage can a small amount do to me?

3. If I don't react to gluten, how am I supposed to measure the results of eating gluten free? (this I am most confused about. Gluten does not give me digestive issues and as far as I can tell I'm not lethargic and anemic etc)

So you're trying to say that you ate only red meat for all those times when you got sick? No seasonings, marinades, buns, or side dishes with the meat? Were you on the paleo diet or something? Even if you didn't eat gluten at the same time as the meat if you ate some gluten several hours (or even a day before) and then got sick when eating the meat it may APPEAR to you that you have a problem with red meat. What I'm trying to say is that a gluten reaction can be delayed by as much as 3 days. Not everyoine is immediately sick when they eat gluten.

To answer your questions:

1. You COULD have a problem with red meat AND be Celiac as well, but when the tests are positive they are positive. You have celiac, welcome to the board. Some of us DO have other intolerances starting out and your may be red meat. You may find that after several months of eating gltuen free red meat no longer bothers you.

2. You need to be strictly 100% gluten-free. Recent studies ahave shown that celiacs that "cheat" and have a little gluten now and then have a rate of cancer that is greater than celiacs that don't adhear to a gluten-free diet at all. Either way, your risk of developing intestinal cancer is greater if you continue to eat gluten. Once you have been strictly gluten-free for a year or more your risk of cancer goes back to that of the normal population. If it helps you think of gluten as rat poision. Do you want to eat just a little rat poisin with every meal or would you prefer that your food be 100% safe? A little bit will do damage and keep your antibodies active. In addition to the cancer risk there is a greater risk of developing other associated autoimmune diseases.

3. See my answer above about delayed reactions... Also there are "silent celiacs" that don't have any symptoms at all. They still need to maintain a 100% strict gluten-free diet.

[sb2178]

How will I know when my body starts to improve if I don't show symptoms?

Well, you should have follow-up bloodwork. You may also notice that random weird things are no longer a problem. Like, headaches, or your allergies seem calmer, or you used to get muscle spasms, or canker sores...

How long will it take for any existing damage to repair itself?

Really basic cell repair starts in about three days. Total repair of adult intestines can take up to two years. How's that for a vague answer?

Once everything is fixed (ie, no gluten then no anti-bodies attacking, damage repaired), can even one bread crumb undo all the hard work? Or will my body be able to process SOME gluten?

Nope. None. Absolutely none. As little as 20 ppm can start the autoimmune process.

What is likely to happen if I don't go gluten free? I know it can cause long term damage of sorts?

Exactly. You'll be at high risk for osteoporosis, higher risk of other autoimmune diseases (thyroid problems are very common), arthritis at a young age, and all the diseases from malnutrition like anemia and vitamin deficiencies. It would be gradual, and could take quite a long time, but voluntarily subjecting yourself to random bleeding, bruising, nosebleeds, anemia, iron deficiency, infertility, muscle spasms, nerve pain, etc. In the more lighthearted vein, how early do you want to go gray?

Is there any chance the test results could be a false positive? (ie, I'd been sick, could something other than coeliac disease have caused the results?)

Nope. EMA is only positive in celiac disease. On another note, the problem with meat is likely a problem with fat digestion. The damage in your intestines prevents your body from producing all the enzymes it needs to digest food, including fat. Large amounts of fat are often difficult for newly diagnosed celiacs to digest. Even a year later, if I am exposed, a major symptom is malabsorption of fat.

[Kim69]

Hi Wook. I would not be relying on the results of a blood test only. Going gluten-free is seriously difficult and if you are truly Coeliac you do need to adhere to the diet strictly and avoid as little as less than a crumb!

I got my test results out to compare to yours but it's difficult because different labs use different acceptable ranges (I guess depending on there process). These were my blood test results:

AGA IgA 10 (normal range 0-20)

AGA IgG 84 H (normal range 0-42)

Endomysial Ab positive

T-glutaminase >100 (positive is greater than 8)

comments from lab - lots of words here but the crux is that the results are "suggestive of Coeliac disease".

I had a biopsy (a gastroscopy is where a tube with camera goes down your throat while you are asleep). It's totally painless and takes a morning. The biopsy came back as positive for celiac disease.

It's hard for you to accept a diagnosis since you don't have direct symptoms. My worst times were after I ate brown rice! It may be that red meat is difficult for you to digest and causes pain. It may be a result of damage to your villi.

If I were you I would:

1. get a biopsy done. Ask your pdoc for the test. In Australia a gastroenterologist does this test at a hospital or clinic.

2. If positive, join your local Coeliac society if there is one. Learn as much as possible about Coeliac disease. See a dietitian. Get tested for b12, zinc, vit d, iron, folate deficiencies (this is the list my gastroenterologist gave me

and my pdoc).

If positive, it's advisable your blood relations get tested. It's a hereditary auto immune disease. For example my mum has diabetes which is also an auto immune disease.

Yes, if it's positive you will need to be very strict. Your villi wil become damaged. If damaged they dont absorb nutrients from your fod very well. The nutrients go down the toilet. The risks are osteoporosis (at 40 yo I have osteopenia which is pre-osteoporosis, possibly due

to undiagnosed celiac disease), cancer of small intestine, fatigue,

other symptoms due to malnourishment.

Good luck and I hope that it was a false positive.

[Darn210]

Welcome wook!!

Positive is positive. My daughter's GI thinks that it is just a matter of time before the diagnosis will be made based on a positive blood test only and that the Medical community is slow to change from the old standard of requiring an endoscopy (which was required with an older less accurate blood test).

That being said, if the doctor is planning on performing an endoscopy, you need to stay on gluten until after the procedure. Repeat: you need to stay on gluten until all testing is done.

The red meat may have been a problem because it is so much harder to digest than the rest of the food you've been consuming. My daughter couldn't handle blue food dye just prior to being diagnosed. Now it's OK, although I still don't let her have too much because blue vomit doesn't come out of beige carpets and I've been scarred for life

Many people find that once they go gluten free and their intestines have a chance to heal, they become more sensitive to gluten . . . as in your body now recognizes this as the agent that causes the damage to your gut and it's going to let you know about it.

[wook]

Thanks heaps guys.

For the moment, due to (mainly money) constraints, I'm unable to be strict about this. I've certainly cut it way back though wherever possible. (I had a pretty terrible gluten intensive weekend away while camping).

Now I'm back in the normal world again I can start focusing on learning and progressing. I'm certainly not looking forward to being more sensitive to gluten, but I guess its all part of the experience!

I'd be keen to see some more test results. I've seen a few others on this forum and mine certainly look "Just" positive (except for the T-glutaminase- which i think only shows intestinal damage?)

My last question (for the moment) is:

Could this just be an intolerance to gluten instead of coeliac disease?

[cahill]

My last question (for the moment) is:

Could this just be an intolerance to gluten instead of coeliac disease?

I agree with Darn210 and Raven ,a positive is a positive.

To address your question,

whether an intolerance to gluten or celiac disease the treatment is the same: a 100% gluten free diet.

Welcome to the forums

[wook]

I agree with Darn210 and Raven ,a positive is a positive.

To address your question,

whether an intolerance to gluten or celiac disease the treatment is the same: a 100% gluten free diet.

Welcome to the forums

Well my thinking is that an intolerance means I can actually tolerate a little bit of gluten, where coeliac disease means I can't.

Finding it extremely hard to eat 100% gluten free to be honest. I don't have the money. And even with focusing on eating gluten free I accidentally ate at least 2 things today that had gluten in them.

Cutting way back is easy and entirely doable. Eliminating it entirely seems like an expensive and utterly difficult task.

[mushroom]

Well, I suppose you can fudge in your thinking all you like because something seems too difficult But an intolerance is an intolerance and a fudge is a fudge. If you are intolerant to something it does not mean you can tolerate a little. Everyone gets hung up on the celiac diagnosis rather than the intolerance. Celiac disease is one form of intolerance to gluten. There are others, including what is officially labeled as non-celiac gluten intolerance. Regardless of which label you have, if you eat gluten you are damaging your body. That being said, it is entirely your body and you may chose to do to it what you wish. We are merely trying to advise you that it is a very bad idea to eat things which your body is sending a clear message that it does not like. To ignore it is inviting your body to retaliate in ways you may not like down the road. And yes, a little bit keeps the damage going.

Eating gluten free does not have to be expensive. It can most certainly be more inconvenient, no one is denying that. The expense comes in buying the gluten free convenience foods, the pre-processed foods, which are more expensive because they are produced in lower volume from grains that are produced in higher volume, and from having to be processed in a different facility or on lines that require careful cleaning before they can process gluten free. Our ancestors did not have this option. They processed all their own foods and we can still do this today from the same basic ingredients available to them. It does take more work and more planning, but it does not need to be more expensive. Now, as a male you may not have done much food preparation up till now, and the prospect may be daunting. But everyone can learn to cook, and it sounds like your time is now. Do you have to change your lifestyle? Yes, you do. Is it worth it? That is up to you.

[sa1937]

Eating gluten free does not have to be expensive. It can most certainly be more inconvenient, no one is denying that. The expense comes in buying the gluten free convenience foods, the pre-processed foods, which are more expensive because they are produced in lower volume from grains that are produced in lower volume, and from having to be processed in a different facility or on lines that require careful cleaning before they can process gluten free. Our ancestors did not have this option. They processed all their own foods and we can still do this today from the same basic ingredients available to them. It does take more work and more planning, but it does not need to be more expensive. Now, as a male you may not have done much food preparation up till now, and the prospect may be daunting. But everyone can learn to cook, and it sounds like your time is now. Do you have to change your lifestyle? Yes, you do. Is it worth it? That is up to you.

On my last appt. in early April, my GI doc said that so many of his celiac patients complained about the cost and how difficult it was to be gluten-free. So when he asked me if I found that to be true, my answer was No and No.

I think the key is that you really have to cook to find the diet fairly easy and with so many families eating out so much and using so many unhealthy convenience foods, then yes, it would be very difficult and expensive, too. That's not to say that it's not a PIA at times. I eat a lot of things now that I've always eaten. The Standard American Diet (which I call the Sad American Diet) isn't healthy now like it used to be when families cooked from scratch and didn't turn to convenience foods so much.

[alex11602]

Well my thinking is that an intolerance means I can actually tolerate a little bit of gluten, where coeliac disease means I can't.

Finding it extremely hard to eat 100% gluten free to be honest. I don't have the money. And even with focusing on eating gluten free I accidentally ate at least 2 things today that had gluten in them.

Cutting way back is easy and entirely doable. Eliminating it entirely seems like an expensive and utterly difficult task.

As far as the cost I can completely relate, my husband doesn't make alot and I am not working and we have 2 adults and 2 children to feed gluten free (along with dairy/soy/egg/yeast free and no antibiotics or hormones in meat). Perhaps if you gave us things that you eat now we can help you with if its safe or what a safe alternative would be. For my family personally we very rarely buy anything that is not mainstream food and although this may not work for everyone it does for us.

As far as mainstream foods go fruits, vegetables, most meat (we can not buy store bought ground meat because the grocery stores around us add soy to it), rice, potatoes, McCormick spices, 5 of the varieties of Chex cereal, Fruity and Cocoa Pebbles, grits, most popcorn (we use an air popper and just add our own butter). These are all marked as or naturally gluten free and there is a wide variety of quick meals and snacks that can be created from these things and they are not very expensive. For all four of us we spend around $250 a month in food so that is only $62.50 a person for the whole month. Sales are your friend and if possible I would imagine that buying some things in bulk would save money although I am not positive on that one. Good luck to you.

[cahill]

Well my thinking is that an intolerance means I can actually tolerate a little bit of gluten, where coeliac disease means I can't.

Finding it extremely hard to eat 100% gluten free to be honest. I don't have the money. And even with focusing on eating gluten free I accidentally ate at least 2 things today that had gluten in them.

Cutting way back is easy and entirely doable. Eliminating it entirely seems like an expensive and utterly difficult task.

I am intolerant of Soy . The last time I ingested Soy (a very small amount ) I ended up in the Emergency Room .It took weeks to fully recover .

[ravenwoodglass]

Well my thinking is that an intolerance means I can actually tolerate a little bit of gluten, where coeliac disease means I can't.

Finding it extremely hard to eat 100% gluten free to be honest. I don't have the money. And even with focusing on eating gluten free I accidentally ate at least 2 things today that had gluten in them.

Cutting way back is easy and entirely doable. Eliminating it entirely seems like an expensive and utterly difficult task.

Not to be overly dramatic but your life and quality of life depend on your being completely gluten free. It makes no difference if you use the label intolerant or celiac the need to be strict with the diet is the same. Many, including some doctors are under the impression that intolerance is less serious than celiac. It is not. Some doctors would call me intolerant because I don't show up in bloodwork. You can see by my signature what being 'just intolerant' can do to a person. Fortunately I was finally firmly diagnosed celiac but I was very close to death. It took literally years for me to recover fully. Even a tiny amount of gluten will keep the antibodies active and attacking your organs.

As far as it being expensive I spend much less on food now than I did prediagnosis. Meat, fish, chicken, eggs, rice, potatoes, sweet potatoes, veggies and fruit, nuts and wild rice are all naturally gluten free. It is the specialty stuff like cakes, cookies etc that are really expensive. Bread is a little more costly but is my main specialty item. Gluten free pasta can be a bit more than wheat pasta but I usually get rice pasta from the oriental section of my local grocery and that is not as pricey. The diet is doable and it doesn't have to be expensive.

[Bamberz1977]

I don't find being gluten-free to be extremely expensive, my biggest expense is buying gluten-free bread. It can be a complete pain in the butt at times. I had a complete meltdown in the middle of the grocery store because I was exhausted but knew I couldn't just pick up a pizza. I am finding though that being gluten-free is challenging me to be more creative in my cooking, and I am saving money because I am actually planning meals instead of just going through the store and grabbing what looks good.

[Takala]

Ah, you see, this is an example of why I was going on a bit passionately, over in the publications section, about the spokesperson for a certain group, who was speaking as a dietician with some expertise, saying that gluten intolerant people could eat as much as they could physically handle, when combined with the statements of one of the best researchers in the world, who is trying to line out the difference between the celiacs and the gluten intolerants (because right now, they're trying to sort this gene thing out). When it gets written up by a standard journalist, and edited by somebody else, neither whom is familiar with food allergies, nor auto immune issues, nor food intolerances, the result can be mass confusion.

The researcher is trying to figure out what to do with the people who do get sick from gluten, but don't show results on the blood tests and biopsies or don't have what is considered the right genes, at the present moment in time.

Wook,

Some barbeque briquettes can be made with gluten as a binder. So your meat got wheat- smoked. And almost certainly the grill, even if it's a gas grill, is contaminated with old marinades and sauce residue, which likely contain gluten. Or somebody grilled the buns on the same surface.

It's entirely possible to react to something else that is not wheat, based on my own experiences. This disease can affect how your liver functions, and therefore how you react to fatty foods. Fat combined with gluten can be harsh. I am married to a person who loves bbq. He was the first to notice I consistently got sick after every weekend. And I kept trying to figure out what it was, since it seemed to be related to either things like pork sausage, or fried chicken, or grilled ribs or hamburgers. I even was veering towards going vegetarian for awhile, mistakenly believing it was meat. What a disaster.

Re the test results- more likely to get a fake negative, than a fake positive. I'm not officially anything other than gluten intolerant, because I don't react much on blood tests, and at the time I could not convince any doctors that the symptoms I had were food related. I have since found a PCP that believes me, because he saw the results of my self putting my own self on a strict diet for years, in spite of being told by bad neuro that I was not having a food auto immune reaction - and he's seen x rays of bone loss, and my brain scan results. Once a person is off of gluten for a long time, they should test negative anyway, so it's a moot issue, unless I get curious enough to go for a genetic test. (considering my ethnic background, it's more like, how can this not be the problem , I mean, come on, I've got the pale skin and everything ? ) Yet if I consistently ate "just a little bit" of gluten, I would be back on the road to losing my ability to walk again, plus the feeling in my hands and feet from neuropathy, and I have no intention of going there peacefully.

The learning curve of learning how to avoid hidden gluten is not something that anyone masters in a few days. But it is entirely doable.

[wook]

Thanks guys.

I don't do the cooking in my house. For the time being I still live with my Parents, and Mum is the cook.

Gluten seems to be in everything. And Mum and Dad shouldn't have to go gluten free, and I don't expect them to. That leaves me with sorting out ALL of my own food and cooking processes. On a jobless student's budget. I can hardly afford petrol to get to TAFE (college)... adding in 3 gluten free meals a day to that is undoable.

Now I know my Mum can cook gluten free meals and use gluten free ingredients in her existing recipes, but when things like our BBQ, toaster, brevil, oven trays, pots and pans are contaminated, what's the point!? Especially when i show no symptoms and won't even know if I get 'glutened'! Frustrating!

Anyway, lets just say mum and I work together (which we are), and try to work out alternatives,the things we need to sort out are probably:

Stir Frys

BBQs

Currys

Pastas and pasta based dishes

Soy sauce is in a lot of marinades my mum makes.

We also eat a fair bit of spaghetti and pasta based dishes.

Soy sauce is also in stir frys.

There's a seemingly endless amount of ingredients that mum uses in her recipes which contain gluten in some form or MIGHT contain gluten.

And of course, eating out. We get pizza probably once a month from our local pizza shop. I LOVE that pizza. They offer gluten free pizzas, but then they only have one pizza oven... so how's that work?

We also sometimes go out for Chinese or Indian food.

I have no idea how that's going to or is supposed to work.

This is all quite depressing, if I'm honest. I drank my last ever beer on Monday. (Well I guess at least the hardest part is over! lol)

[mushroom]

Being a dependent student does make life tougher, but if your mom is willing to work with you it is doable.

First off, you are going to have to start taking lunches and snacks with you - there's no cheap way around that. You can eat a gluten free breakfast at home pretty easily with eggs and bacon, gluten free cereal (Chex has a couple of cereals which are gluten free) and fruit, whatever floats your boat. Udi's makes a good bread for toast and sandwiches. There are several kinds of corn and potato chips that are gluten free for snacks, Larabars are a good standby when you are starving. Then you can work with your mom on making your dinners gluten free. Meat, fruits and vegetables are naturally gluten free unless you add gluten to them in the cooking process. Your mom can use a gluten free flour mix for cooking and making sauces, there is gluten free pasta (Tinkyada is good), there is a\gluten free soy sauce (La Choy or Tamari) for your stir fries and marinades, and yes, gluten free pizza although I haven't eaten any out others will advise you on reliable chains. PF Changs and Pei Wei are two Chinese chains that do gluten freel and Indian food is generally pretty gluten free.

It is difficult when you don't have symptoms so that 1. You don't know when you have been glutened, and 2. You do not feel any better because you have been religiously following the diet. But your body will thank you in later years for making the effort because you will not develop the latent disease so many of us have from being misdiagnosed. You are looking upon yourself as being unlucky to be diagnosed and have to follow this diet, but look at it from our perspective. Many of us did not know about celiac disease and our doctors misdiagnosed us for 20-30-40 years, so that we ended up developing the other autoimmune diseases that celiac can cause which we could have avoided if our doctors had been more on the ball.

I am sure others will give you lots of other ideas for how to manage your particular gluten free situation, but I think the first thing you have to do is develop a can-do attitude, rather than a can't-do

[GlutenFreeManna]

Thanks guys.

I don't do the cooking in my house. For the time being I still live with my Parents, and Mum is the cook.

Gluten seems to be in everything. And Mum and Dad shouldn't have to go gluten free, and I don't expect them to. That leaves me with sorting out ALL of my own food and cooking processes. On a jobless student's budget. I can hardly afford petrol to get to TAFE (college)... adding in 3 gluten free meals a day to that is undoable.

Now I know my Mum can cook gluten free meals and use gluten free ingredients in her existing recipes, but when things like our BBQ, toaster, brevil, oven trays, pots and pans are contaminated, what's the point!? Especially when i show no symptoms and won't even know if I get 'glutened'! Frustrating!

Anyway, lets just say mum and I work together (which we are), and try to work out alternatives,the things we need to sort out are probably:

Stir Frys

BBQs

Currys

Pastas and pasta based dishes

Soy sauce is in a lot of marinades my mum makes.

We also eat a fair bit of spaghetti and pasta based dishes.

Soy sauce is also in stir frys.

There's a seemingly endless amount of ingredients that mum uses in her recipes which contain gluten in some form or MIGHT contain gluten.

And of course, eating out. We get pizza probably once a month from our local pizza shop. I LOVE that pizza. They offer gluten free pizzas, but then they only have one pizza oven... so how's that work?

We also sometimes go out for Chinese or Indian food.

I have no idea how that's going to or is supposed to work.

This is all quite depressing, if I'm honest. I drank my last ever beer on Monday. (Well I guess at least the hardest part is over! lol)

Soy sauce is easy to replace if you Mum uses it in a lot of things. There are gluten-free soy sauces or Wheat-free Tamari sauce. I use a non-soy soy sauce called Coconut Aminos--it tastes just like soy sauce.

Ask the gluten-free pizza place what they do to make the gluten-free pizza safe. Most places will cook their gluten-free pizza on foil or a special pan used only for the gluten-free.

As far as the pasta--yes gluten-free pasta can be expensive. If you have any Asian grocery stores in your area look and see if they have any rice pasta--it will not be marked gluten free but it should have just rice and water listed at the ingredients. It is much cheaper than the specialty gluten-free pastas. Beyond that however you can simply change to eating more rice, corn, and potatoes instead of pasta. Those are all inexpensive staples that are naturally gluten-free.

Lastly, you DO have symptoms! Your first post said you had diarhea and vomiting. I believe your reactions are either delayed or they are reactions to the marinades your Mum used on the meat. It may help you to keep a journal or everything you eat and when you start to get symptoms. This may help you to look back to what you ate and figure out if it might have had some hidden gluten.

[T.H.]

Could this just be an intolerance to gluten instead of coeliac disease?

Short answer: nope. It can't be. The Endomysial Antibodies test? It is not as sensitive as some of the other tests, so it can give false negatives. However, it is 'virtually 100%' specific for ONLY Celiac Disease. So since you were positive on that test, you've got Celiac Disease, not non-celiac gluten intolerance.

( Open Original Shared Link )

As an example of what might go wrong if you don't go 100% gluten free, I'll give my father's example. We're suspecting that he developed this disease when he was in his twenties. He was diagnosed in his 40's. He was a big athlete, ate well, did martial arts, skiied, biked 15 miles to work every day, no gut problems at all, no noticeable health issues that he knew of.

In his forties, he started developing pain in his hips. They thought it was an old football injury. Replaced it. Then the other hip went. Replaced it. Then his spine started to develop arthritis and the discs started to herniate one after another until he went from biking 15 miles daily to barely able to walk without a cane, in the span of about 5 years.

All his joints were going on him, and probably would have become worse, except he developed a gut infection because of his celiac disease, and then an ulcer, and they finally found out he had the disease by accident when they were looking for cancer as the possible cause of the rapidly developing ulcer.

He can now walk without a cane most days, but he can no longer do anything more athletic than walking except a little bit of swimming.

All this damage was slowly accumulating over the years. There was no real way to tell that this was about to happen until it was too late.

My whole family is like that - we were all athletic, all didn't have gut issues either at all, or only until near the diagnosis. The problems from this are, basically, that your body is slowly starving to death. So any part of your body that needs nutrients to continue to function and grow properly (all of 'em, in other words) will slowly start to have issues.

Quite frankly, it just sucks.

But I'd second the whole foods approach - fruits and veggies, whole grains, and a little meat or beans - that's all you need to start, really.

[anabananakins]

Hi Wook

So, from your mention of TAFE I can see you're a fellow Australian :-)

You can get gluten free soy sauce in the same section as regular soy sauce. It works/tastes just the same. I don't live with my parents but my mum keeps that for when I visit.

Your parents will want you to be healthy, to live a long and happy life. Gluten free is what you need to do that. They don't have to be gluten free themselves; my mum and sister still eat bread and regular pasta and I serve myself first if there are any ingredients to be added to the meal that I can't have. I have my own colander. My mum was really dubious about me being gluten free but she's been awesome about it and with your definite diagnosis, I'm sure your mum will be too. BTW, I'm not "officially" diagnosed but I am still extremely sensitive to contamination. You have a diagnosis.

You could help your mum and dad with a big spring clean (well, autumn-clean) of the kitchen and go through the pantry etc to work out what you can and can't eat. Pots and pans can be scrubbed, you can use silverfoil to protect your food on the BBQ or the toaster ovil. For a regular toasters, they are pretty cheap at Target or Kmart. So are a chopping board and colander.

It's heaps easy to be gluten free in Australia. You don't need to buy any special foods and the labelling is great. The forums here probably make it sound harder than it is, that's because it is a lot tougher in the US (I spent a month there last year, shopping was overwhelming and menus were gluten-riddled. It's NOTHING like so bad as that here).

The san remo gluten free pasta is in the same section as regular pasta, usually (it is in Woolies, but Coles have it in the gluten free section). It tastes great and is very like 'normal' pasta. It doesn't cost much more.

Aldi has a range of gluten free products that are excellent value. I had their buckwheat pasta the other day, it was great.

most pasta sauces and pesto are fine.

Stir fries, with gluten free soy sauce, are fine

For curries, the Ayams brand is labelled gluten free.

Let me know what other ingredients your mum is having trouble with and I'll see what I can suggest. The white wings flour (in the gluten free section) is great, even my sister thought the yorkshire pudding and pikelets we made with it taste normal.

With pizza, Crust is good. I've never gotten sick from them. There's also an excellent gluten free pizza base you can get from the wraps section in the supermarket. I can't think of the name off hand but it's great. Non gluten free friends love it.

I hate to say this but you have to let go of Chinese food, pretty much. Lots of Indian places are fine though. McDonalds fries and hash browns are fine.

The celiac society lists restaurants by area. Just google and it'll come up. But it's only a fraction of the restaurants that you can eat safely at.

You can do this! Truly :-)

[rosetapper23]

Although I agree that the best way to go is to eat only natural foods, here is a list of "regular" processed foods that can be found at the corner market that are gluten free:

Open Original Shared Link

It's over a 100 pages of every possible thing you'd care to eat....and, no, they're not more expensive. Hope the list helps you!