A Newbie With A Few Questions...

[MissWingBat]

Hi there,

I am a newly diagnosed Celiac after suffering for years. Doctors told me that I was just tired and exhausted after having my 3 kids and it was nothing. I have been researching celiac in Australia but there are very limited websites available and stumbled across this great site!

I have a few questions to do with coping and managing this disease.

1. How do you know if you are a bad celiac? I've seen a few members with this written under their posts. My antibody test was 14, way over the designated 8.

2. When am I going to start feeling better? I had an endoscopy on 7th Sept, and just got my results from the hosp last friday, ordering an immediate strict gluten free diet. The problem is, my doc wont see me until next Thursday! I have 'started' being gluten free, but not sure whether to go FULL ON and cut everything out.

3. Initial reaction to telling people - does everyone else get this "Oh, but a little gluten won't kill you, you'll be fine". What sort of response should I give to make people understand the severity of this?

I have a heap of other questions and stuff but I'd better wait and see if I get a reply...

It's just been great reading up on these forums and getting the 'real life' experience from forum members.

[missy'smom]

Welcome. I thought the whole being a new mom thing wore me out too. Pregnancy or childbirth triggered the disease in me and it took the next 8 years to figure out what's wrong. In my experience, I felt better right away but it was like peeling back the layers and I recovered in stages over a period of a year and have a little ways to go yet.

I don't get that kind of response but if I did, I'd tell them "My mother has suffered from this for 20 years and will die from the complications of it going untrreated" That would silence them quickly!

[hathor]

Hmmm. I thought that doctors were more enlightened in Australia about all this. Too bad you had to suffer for years and be told it was nothing.

I don't know that it makes any difference if you are a "bad celiac," a regular one (or whatever the opposite adjective is), or a "mere" gluten intolerant. The problem is serious enough for all to do the only effective treatment, complete avoidance of gluten.

No one can answer how quickly you will get better. I noticed changes right away, but I had some definite ups and downs for a few months. People can take months or even a year or two to feel completely better. Since you have your test results, I see no reason to hold off on the diet. The doctor isn't going to tell you anything different, or prescribe some pill that will allow you to consume gluten.

I never got the "a little gluten won't kill you" line. Maybe because people who know me know I will research things to death, will make up my mind what has to be done, and won't take kindly to folks criticizing me when they don't know anything about the subject at hand.

If I were to get the line, I would say something about how I really wish that were true and even would have thought so myself before I researched the subject. However, much to my disappointment, I would say, the experts are unanimous that even a little gluten will stop my body from healing and will make me very sick. No food is worth that. Further, for most things with gluten, there are gluten-free substitutes available (although it will take some personal experimentation to find your favorites). Eating a gluteny version would be foolhardy.

I don't know to what extent people really want to be educated about someone else's health problems But you could say something about how untreated, active celiac, not only makes you physically ill in the short term, but also is linked with cancer, osteoporosis, autoimmune disease, etc., etc. Then direct them to celiac.com and other such sites if they want to know more.

Good luck. Explore all the resources on this site and ask what questions you have. Hopefully you will get feeling better soon. Your diagnosis is actually good news because you know now what was making you sick and there is a simple cure, without side effects.

[Luisa2552]

Welcome to the site. It was just 2 months ago I was in your position. Newly diagnosed and wondering what to do. Doc wasn't much help. This site has an amazing amount of information. Spend time reading posts, pick up good books. Living Gluten Free for Dummies was a great book.

Antibody titers can't determine how 'bad' your celiac disease is. There are people whose numbers were in the hundreds with no symptoms, and on the flip side people with negative titers that were extremely ill.

You do want to make your way to 'full on' gluten-free diet, but don't sweat it at the beginning. I made mistakes and got glutened and slowly learned. Best way to start is eat whole foods- meats, fruits and veggies, rice. Research products- there are lots of lists floating around these boards. Large grocery store chains have lists of gluten-free products.

Everybody heals at a different rate, generally 2-3 months is where most people feel really good. I noticed results within a week, but I'm just now having less frequent abdominal pain.

I have been lucky and haven't been in the position of having to deal with people misunderstanding this disease. If someone told me a little gluten wouldn't hurt I would probably say to them it's obvious you know nothing about celiac disease because small amounts of gluten CAN make me very ill. Or say something like 'gluten causes my body to destroy my small intestines so no, I won't be fine with a little gluten.'

Good luck. This will all become second nature in no time.

[UR Groovy]

3. Initial reaction to telling people - does everyone else get this "Oh, but a little gluten won't kill you, you'll be fine". What sort of response should I give to make people understand the severity of this?

Hi & welcome,

I have dealt with this. It's my sister, who always thinks she knows everything about everything. After months of struggling to make her understand that I wasn't willing to go to restaurants & take the chance, I gave up and decided that she's just not going to get it. Therefore, it's not something I can control. The things I can control are the decisions about my health that I make. It's simply not her decision. It's my reality. Though I'm not Celiac diagnosed, I tested with a crouton sized piece of whole grain bread a couple months ago after being gluten-free since last year. It wasn't pretty, & I'm not willing to go through that again to satisfy my sister's need to be right. I just roll my eyes at her and make my own decision - no need to argue with her. You'll figure out what works for you in time. I tortured myself with all this stuff in the beginning. I don't worry so much now. I just take it all one day at a time.

I think what you'll find is that everyone is different - healing time is different.

Good luck to you.

Take care

k

[texasgal]

Hi there,

I am a newly diagnosed Celiac after suffering for years. Doctors told me that I was just tired and exhausted after having my 3 kids and it was nothing. I have been researching celiac in Australia but there are very limited websites available and stumbled across this great site!

I have a few questions to do with coping and managing this disease.

1. How do you know if you are a bad celiac? I've seen a few members with this written under their posts. My antibody test was 14, way over the designated 8.

2. When am I going to start feeling better? I had an endoscopy on 7th Sept, and just got my results from the hosp last friday, ordering an immediate strict gluten free diet. The problem is, my doc wont see me until next Thursday! I have 'started' being gluten free, but not sure whether to go FULL ON and cut everything out.

3. Initial reaction to telling people - does everyone else get this "Oh, but a little gluten won't kill you, you'll be fine". What sort of response should I give to make people understand the severity of this?

I have a heap of other questions a stuff but I'd better wait and see if I get a reply...

It's just been great reading up on these forums and getting the 'real life' experience from forum members.

[texasgal]

Hi there,

I am a newly diagnosed Celiac after suffering for years. Doctors told me that I was just tired and exhausted after having my 3 kids and it was nothing. I have been researching celiac in Australia but there are very limited websites available and stumbled across this great site!

I have a few questions to do with coping and managing this disease.

1. How do you know if you are a bad celiac? I've seen a few members with this written under their posts. My antibody test was 14, way over the designated 8.

2. When am I going to start feeling better? I had an endoscopy on 7th Sept, and just got my results from the hosp last friday, ordering an immediate strict gluten free diet. The problem is, my doc wont see me until next Thursday! I have 'started' being gluten free, but not sure whether to go FULL ON and cut everything out.

3. Initial reaction to telling people - does everyone else get this "Oh, but a little gluten won't kill you, you'll be fine". What sort of response should I give to make people understand the severity of this?

I have a heap of other questions a stuff but I'd better wait and see if I get a reply...

It's just been great reading up on these forums and getting the 'real life' experience from forum members.

Once I got on the diet I started feeling better in about 4-5 days. I've been on it for over a year and overall I feel better but I keep getting cross contaminated so be careful. At first I went to restaurants that everyone wanted to go to so I wouldn't be a bother - thinking I can always order a corn taco or salad. Family dinners were also hard because not everyone knew what was safe and would claim "you can eat that" so I would and sick I would get. Now I know that I'm the one who suffers. Others may think it's ok - a little gluten won't kill you but they're not the one who gets sick for days. I look out for me now. And I won't apologize for having this condition. It's not of my choosing ... I would rather not have it but I do and I am tired of being sick. It took 5 years, a hospitalization, diagnosis of gerds, acid reflux, IBS, etc before a "new young doctor" said lets try gluten-free. I thank God for her. Hang in there. Get on the diet and be strict with yourself until you are certain you know the diet. Take it from me, who just got over a 4 day episode of gluten contamination from a restaurant, your family and friends really want you to feel better and thrive, they just don't realize that gluten-free is not all that simple.

[MissWingBat]

Hi there everyone and thanks for your replies and comments. I am going to see the doc tomorrow, who will inturn refer me to the dietitian at the hospital. Thankfully the medical costs here are free in Australia. We'd be up poo-creek without a glutenious paddle if we had to pay for all these specialists.

I'm not sure what the laws are in America, but we had a law passed in 2003 in Australia that all food products that contain wheat must have appropriate labelling, even the derivatives and processing equipments, so that really helps alot when shopping. Basically, if it doesn't have a gluten warning on it, you can have it. I even checked our homebrand panadol and it says it doesnt have gluten.

My mother (after much pestering) finally was diagnosed today with celiac disease as well. Seeing her mother (my nanna) died of bowel cancer, and when I found out she said that 'she knew' all her life she had it (!!!) I cracked and told her to get to a medical opinion on the matter. She has a different type of celiac disease though, apparently mine I do not absorb anything, she stores it. Hence why she is overweight. So at the moment, we are at different stages - she's relief and 'she'll be right, this is great' and I have hit 'oh poop' stage and feeling like crap.

The other huge 'blearh' thing is now I have to get my three kids tested, 2 of which are showing classic symptoms. Just going through a bad patch, and trying to get my head around all the research. Thanks for the great advice and will be reading, reading reading!!

[tarnalberry]

1. How do you know if you are a bad celiac? I've seen a few members with this written under their posts. My antibody test was 14, way over the designated 8.

The scores don't really matter, as far as we know at the moment. It may say something about how responsive your system is, but not necessarily anything about either symptom severity or damage severity (with may be unrelated to each other). Celiac disease is binary - like pregnancy - you either have it or you don't.

2. When am I going to start feeling better? I had an endoscopy on 7th Sept, and just got my results from the hosp last friday, ordering an immediate strict gluten free diet. The problem is, my doc wont see me until next Thursday! I have 'started' being gluten free, but not sure whether to go FULL ON and cut everything out.

Until you're totally gluten free - don't expect to feel better. You might - some people feel better gluten light - but don't get your hopes up. After going gluten free... it all depends. You may notice real improvement in a week, only to plateau and make slow, but steady, gains for the next year. You might feel totally great after two months. You might have ups and downs as your body rebuilds one thing after another. It's *highly* individualized, and there's no good way I know of to predict how long it'll take to start feeling better. I would say, however, that if you notice absolutely *no* difference in two months, you don't have the full picture - either with the diet or with your health - and it'd be time to start looking for additional answers.

3. Initial reaction to telling people - does everyone else get this "Oh, but a little gluten won't kill you, you'll be fine". What sort of response should I give to make people understand the severity of this?

I didn't get that at first. I did get it as a question, along the lines of "Is it dose tolerant? Can you have some, or start with small amounts and build up a tolerance?" I did once get, from a coworker who doesn't really understand, a "I don't understand how so little can hurt you." Here's the thing - it doesn't matter one whit if she understands. It doesn't matter at all what other people think, what other people suggest, and what other people want you to do. You make the decisions on what you put in your mouth, hence you can try to explain for them to understand, but if they don't, you can ignore their comments and do what's right for your body.

I'm not sure what the laws are in America, but we had a law passed in 2003 in Australia that all food products that contain wheat must have appropriate labelling, even the derivatives and processing equipments, so that really helps alot when shopping. Basically, if it doesn't have a gluten warning on it, you can have it.

Does the law say that foods with *wheat* must be labeled, or foods with *gluten*? If you're looking for gluten free foods, and relying on a label that says it's wheat free, you're quite likely still getting gluten from barley, rye, oats, and ingredients derived from those grains. Barley, for instance, is a big one due to a lot of malt coming from barley.

She has a different type of celiac disease though, apparently mine I do not absorb anything, she stores it. Hence why she is overweight.

It might help you guys to be in it together to realize that you don't have different types of celiac disease - the same thing is happening in your intestines - but rather your bodies are resonding in somewhat different ways. Some people have metabolisms that horde calories when they are in a 'starvation' mode, so the portions of the intestinal walls in your mom that can absorb nutrients are pulling in what they can, and her body is converting all of it to stored energy. Your body is using that energy, rather than lowering your metabolism and storing everything it can pull out of what you consume. Same thing going wrong in the intestines, different ways for the body to respond to the net situation.

Good luck! You'll get there! And good job on getting your mom tested!

[MissWingBat]

Wow, thanks for the wonderful and informative reply. I went to see the doctor this morning who surprise, surprise, told me to start an immediate gluten free diet. Booked me in for dietition and bone density test.

The laws here are very specific about anything containing gluten. So yes, any barley, rye, starches, maltodextrin etc has to be highlighted that it contains gluten. If it doesn't contain gluten, they dont have to write it - but if they want to claim that it is 100% gluten free they have to provide that information on the nutritional panel on the back.

Just wondering if anyone else when starting their gluten free diets went 'down'? I can't seem to do anything lately. I don't even feel like talking to my mother about it, and this should be something that we should be sharing.

My partner is a bit 'gluten-overloaded' so can't really talk to him either. Just feel a bit of a mess actually and want the whole debacle to go away..... !!!!

[missnbagels]

I am also a newbie. I was diagnosed two years ago. I find this pretty tough. Especially with college coming up. Are there any restauraunts and stores that have a variety of goods foods? Basically any tips i can get would be appreciated.

[loco-ladi]

Very few restraunts are willing to offer gluten free menu's, basically they are worried about cross contamination, its the employee issue with that mostly I think, as some know most think "its not like a little bread crumb will kill you" when in fact it may not kill you but you'll sure wish you were dead! Not a real big difference if you ask me.......

best advice I can give, be well educated as to food prep and processing....... when you must eat out due to travel etc take the safe route, order safe food! also explain in graphic vivid detail that you have a food allergy to wheat/gluten to the waitress, she is your best defence and your gaurdian angel in the restraunt world, she see's if the chef accidently put that roll on your plate and can say..... cook a new meal she/he has allergies etc.....

My favorite is when at a "strange" restraunt to order the salad..... then edit it to have only what I concider safe foods...... a few that I go to on a regular basis have fine turned their kitchens to meet my needs and on my last visit they noted that many other customers were showing up (seems I have a big mouth) and requesting gluten free meals. I also am very sure to tip the waitress/waiter well when she/he performs well dealing with my gluten-free life. if they have the "yeah whatever" opinion they get less than basic, if they show a willingness to work with me I treat them to a nice tip.

[missnbagels]

Thank you very much. this is definately a lot to process