Yet Another Newly Diagnosed Celiac

[Wandering Hermit]

Hi All:

I

[Canadian Karen]

Hi Wandering Hermit:

Firstly, welcome to the board! There are a bunch of really great people here who are always willing to help and give support. Also, there is a wealth of information and experience here..... Since you are at the beginning of your gluten free lifestyle, there are going to be lots and lots of questions you will want to ask. Well, ask away! No question is too stupid here, honest..... We've all been down this road....

Your doctor was correct in telling you that your problems in SE Asia shocked your system. Quite often, celiac disease is "triggered" by some major bug, bacteria, infection, stressful event in your life (death in family, etc.).

You will probably find at the beginning that it feels just so overwhelming! But rest assured, as time goes on, this diet will get easier and easier and when you start to notice the change in your body and how much healthier you feel, you will be so glad you are on it.

There are so many mainstream supermarkets now that are increasingly carrying gluten free items. They are aware of the sharp increase of diagnosis of celiac now.

By the way, my daughter is a HUGE Rush fan. She is 11 years old and is into Rush, AC/DC, Led Zeppelin, Leonard Skynard, etc. She even has a Rush calendar up in her room! She got a guitar for Christmas and is now taking guitar lessons!

Again, welcome to the board!

Karen

[ianm]

Welcome. You will find that your new lifestyle is not going to be as difficult as it first appears. Once you've done it for a while it becomes a habit and you really don't have to think too much about it. You will be glad you were forced to live in a healthier manner I know I sure am.

I am 37 and remember in high school it was Rush, Rush and only Rush!

[Canadian Karen]

Are both you guys Canadian?

Karen

[KaitiUSA]

Welcome to the board You will find so much useful information and supportive people on here.

https://www.celiac.com/st_main.html?p_catid=12

This is a link to lists of forbidden and safe things for celiacs. It will help as a guideline especially while you get to learn the ropes...if you have any questions just ask

[Guest Leidenschaft]

Hi, welcome to the board! Please visit the Gab Room and tell us about your nickname!

I know well the mixed feelings over the diagnosis. I at least had the benefit of my Mom's experience, she was diagnosed 15 years before me. I lived in denial a long time!

You're right about the blessing of JUST having celiac disease, there aren't any surgeries or expensive meds, although many members of this board have many other afflictions related to celiac disease that have required more drastic measures. My good friend has Chrones and Diabetes, and I do feel blessed when I see how rough things are for her!

It sounds like you have a pretty positive outlook, and that's great, but it's also okay to have the occasional pity party as long as you maintain your gluten-free lifestyle! I will try to find my post about my Celiac Survival Kit which I find extremely helpful for travelling and eating out. Try not to stress too much about the big picture, just take it one day at a time.

This board is an invaluable resource and support centre! You're off to a great start!

[Wandering Hermit]

Well thanks for the warm welcome.

I'll tell you something interesting about what my Dr. said... I asked him "If I injest gluten, accidentally or not, will it be dangerous to my well being, or simply cause my annoying symptoms (gas, cramps, D)?" He said it would not have any ill-effects on me long term (!?)

After scouring the web on celiac disease the last couple days, it would seem he is quite wrong - if I don't go gluten-free I'm at a higher risk for cancer, right?

I also got another rude awakening today. I've never been a big milk drinker, but I eat some cheese and yogurt regularly with (I think) no problems. Well I tried the Canrantion instant breakfast this AM as it is gluten-free, and 1/2 hour later it was D time. I guess this is not uncommon. If I understand right, with the lactose it is a question of crossing a threshold - it you get too much at once, it's gonna shoot right through your system, but a little bit can be okay. I'm going to try some kind of lactase additive I guess.

Aside - I'm not Candaian, I live in Minnesota (Twin Cities) - just a huge Rush fan for the last 24 years or so.

[KaitiUSA]

Sometimes celiacs can be lactose intolerant because of damage to the villi. I was lactose intolerant my whole life...after going gluten free I can tolerate it with no problem now because my villi is healed.

If you do not follow the diet you are 40-100 times more likely then the normal population of developing cancer. You would also be more likely to get osetoporosis, neurological disorders, liver...pancreas..or kidney problems, asthma, allergies, etc. It will put you at risk for serious and life threatening illnesses..

I always say Eat to live not live to eat. Gluten is poison to us.

Gluten will damage your intestines...if it wouldn't give us long term effects or hurt us and we were feeling fine then what would be the point of the diet? What your doctor said makes absolutely no sense to me. Ask him if a little bit of rat poison every now and then would affect him long term.

Good luck with everything

[nikki-uk]

Hi wandering hermit.

You are right to say to continue to eat gluten would put you at a greater risk of cancer.My husband's the coeliac,and we always refer to 'gluten' as rat poison for him!

I'm not suprised your doc had it wrong.It would seem docs have alot to learn about coeliac.(In a few months time you will probably know more about coeliac than your specialist!).

Your reaction to milk is also normal.Try and limit your intake for the first few months.If your 'villi'(bowel lining) is damaged and shortened(villous atrophy) lactose intolerance can occur.This is because the ends of the 'villi' absorb milk sugars.Hopefully after a few months your villi will have regrown whilst on the gluten-free diet.

You'll find the whole process a learning curve-but eating gluten-free does get easier with time.(My hubbies been gluten-free now for 8 months).

Also, don't know if your doc told you(probably not) but the coeliac gene can be passed down, so if you've any relations with symptoms,maybe they should get tested.

Hope you're getting to grips with it all!Good luck.

P.S.My brother was a huge Rush fan-and inflicted their music on the wholefamily!

[Wandering Hermit]

Thanks for all the great responses folks. I feel right at home. The last few days have been nothing but frustration - I have spent an ungodly amount of time at the store reading labels and I already don't trust most of them. I know it will get easier, though.

Anyway here is a question that has been bugging me...

Suppose you go on vaction for two weeks out of the year. From what I have read, if you are eating out there is a pretty good chance, even if you are careful, that you are going to get glutened by mistake. So suppose that happens. If it does, is it any more harmful to go ahead and indulge, have some pizza, some bread, etc? I guess I have this idea in mind, please tell me if I am wrong, that once your body sees the gluten, it generates the antigens and you are screwed until you rid them naturally. So I am wondering if in that case the QUANTITY of gluten is a factor or not. If trace amounts are dangerous, are large amounts more dangerous? After all, it is not the gluten per se that is doing the damage, it's your antigens (right?)

If you get glutened once a year, is that considered dangerous? I know I'd rather not get glutened ever again simply because the effects are so distasteful, but I'm trying to be realistic and I expect it's going to happen a few times.

I realize that these might be tough questions to answer definitively.

Thanks!

[rmmadden]

Wandering Hermit,

Welcome aboard!

My story is similar to yours in that my celiac disease kicked into gear after a bout of food poisoning. Before that I never really had any problems at all. Well, it took the Dr's 4-months to figure out what was ailing me and after a positive endoscopy and positive blood test here I am.

I know celiac disease can be overwhelming at times but be patient. Try your best to stick to the gluten-free diet and read, read, read the labels of everything. Hopefully in-time you'll be feeling better.

Cleveland Bob

[KaitiUSA]

Well everyone has accidents sometimes and once a year consider yourself lucky. If you have frequent accidents then you need to be concerned but sometimes accidents are inevitable.

As for the indulging if you get glutened....I used this analogy in another post as well....If you have a car and you get into an accident does that mean you should be careless and wreck it some more to see how much damage you can cause?

You may get a reaction from being glutened and you might not...but your intestines will be damaged by gluten no matter how much the amount.

There are restaurants such as Outback with a gluten free menu. There are things at McDonalds that are gluten free as well. So there are choices when going out.

Basically your anitbodies attack the gluten but they also attack where the gluten is starting to be absorbed in(your villi) so that causes the damage. I think quantity matters...in my opinion the more gluten you have in your system the more your villi will be damaged because of more of it in there trying to be absorbed but failing miserably.

Hope this helps

[KaitiUSA]

Here are also some brands that Richard(lovegrov) posted a few months ago in another post. These brands will clearly list wheat,rye,barley,oats. If that is not listed on these labels below then the product is safe. This is very helpful especially at first when you don't know what to look for.

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

[mommida]

Welcome new person,

You have got a lot of great advice here.

Eating is out, is like playing Russian Roulette. I do my best to make sure the gun isn't loaded, but it is a game of chance.

How much is too much? One micron, (one crumb) could bring on the symptoms, but it will bring on the damage.

I've definately noticed the calcium/magnesium connection. That's why I drink the vitamin/mineral enhanced smart water. (Husband swears it makes me... don't know any of you people well enough to finish that sentence.) Makes me feel a lot better, and has gotten rid of headaches too.

Get ready for a year of learning experiences. You'll be on information overload for a while, don't forget to sit back and enjoy your family.

Laura

[Wandering Hermit]

Kaiti:

Thanks for the info.

I'm also concerned because (a) my Dr. doesn't seem to know much about this and doesn't see it as a big problem and ( I went for about 2.5 years of mild symptoms before being diagnosed. I feel like no matter how careful I am now, I am Mr. Walking Cancer Candidate.

Does anyone know if breathing in flour inadvertantly is dangerous?

[Guest Leidenschaft]

Hey Michael, here is the link to my post about my Open Original Shared Link! It's great for travelling, or just going out to eat in your home town.

Enjoy!

[watkinson]

Hi Wandering Hermit, Welcome

The question about how much gluten is too much? I agree with Katie, accidents happen but try not to make them worse. Also...I feel that it's not really the "amount" of accidental gluten to worry about, it's the effects of it and how long those effects take to wear off. You will notice that the longer you are gluten free the more sensitive you are to it. You may also notice other food allergies or intollerances come up. The effects of the accidental gluten may not include any stomach or bowel problems at all. You may experience terrible joint or muscle pain, fatigue, mental problems like depression, memory loss, brain fog, inability to concentrate, sleeplessness, ect.

Like Katie said there are plenty of resteraunts that have gluten free menus or will accomidate you. We travel alot and I have never gone hungry. Some waiters and waitresses have thought the whole thing is so cool, that they go out of their way to help me. I have had restaraunt managers, owners, and chefs, come out and talk to me personally and make a special meal for me. If you don't run into that just ask if thier hamburger meat is 100% meat and get a bunless burger with vegies and a salad, Or you can get a steak or fish with no marinade or spices. That way you don't even have to tell the waiter your issue. Also look on the menu for low carb dishes, some of those work out to be gluten free.

Wendy

[KaitiUSA]

Yes breathing in flour is then ingested so that will cause damage.

Open Original Shared Link

Here is a link to doctors recommended by celiacs in different states. You may want to consider finding a doctor well versed in celiac. Alot of doctors do not know what they should know about celiac. Some doctors have bad advice that can hurt us instead of help us.

When you follow the diet your chances of cancer go back to that of the normal population. There are going to be accidents...that happens...but if you stick to the diet you will not be a walking cancer candidate.

Let me know if you need any help

[Wandering Hermit]

Interesting about the joint/bone pain. I've been having that A LOT. I told myself it was from working out too hard. I'm certainly looking forward to it abating as my body gets healthier! I'm also hoping it helps with the lethargy I've been feeling for months.

I've read that weight loss is a common problem for celiacs who are eating gluten, but I never had that issue. In fact I'm hoping that now I will be able to shed this last bit of abdominal fat that is so tough to get rid of, because I am now becoming Mr. Fruit and Veggies.

Are there any references in cleanliness in the kitchen if it is not gluten-free? I'm don't want to punish my wife and kids by getting rid of the flour and bread in our house, but I obviously will need to be careful. I'm afraid to even TOUCH the tupperware bin we keep the flour in.

[KaitiUSA]

Well you should keep pots and pans clean, the cookie sheets you should not make anything on because of the flour caked on it, you need to get a new toaster...there are some good gluten free breads available. You should keep your toaster separate and if you touch food you are preparing for them wash your hands before getting into your food. Also you may want to make sure your soap is gluten free in case of it getting in your food via your hands. You should make sure if your wife eats gluten to mouthwash or brush her teeth with gluten free products before kissing you...another way of contamination...also if she has lipstick with wheat starch in it like alot do. It may seem overwhelming but once you get used to it then it really is not.

Foods by George has some english muffins that come in plain and cinnamon...I toast them and eat them just about everyday. There are other great brands like Kinnikinnick who also make donuts.

There are alot of things connected with celiac and you mentioned you did not get weight loss. There are over 200 symptoms with celiac and they vary from person to person. Some people even gain weight.

If you need more info just ask

[tarnalberry]

Welcome to the board.

It is overwhelming at first, but it does get better over time. I highly encourage people - particularly when first starting - to stop eating prepackaged, preprocessed foods. (Pretty much anything with a label! Almost, anyway.) Yeah, it'll mean more cooking when you're working from scratch, but you'll know EXACTLY what goes in your food, and it has the bonus of tasting EXACTLY the way you want it to.

As for traveling and eating out... I do a fair amount of business travel, and usually book a room with a kitchen so I can go to a grocery store, buy fresh items, and cook my meals. I also bring a lot of non-perishables with me. But as others have pointed out, with a fair amount of diligence, you can work with a lot of restaurants to get the food you need.

[celiac3270]

Hi and welcome!

Just want to stress that there are definitely long-term effects!!! Whether you get gastrointestinal symptoms from ingesting gluten, long-term ingestion can lead to the development of many other complications, to name a few: cancer, osteoporosis, type 1 diabetes. Long-term ingestion of gluten will greatly increase your likelihood to develop cancer and could lower your lifespan by 20 years.

If you ingest some gluten, you still cannot indulge. A little gluten will do a little damage, but indulgence will result in complete villous atrophy. There is a chance you'll get contaminated, but then, there's a chance every time you eat out. You very well may not. Just make sure you explain your dietary restriction very well to the chefs in restaurants and be aware of who has a gluten-free menu (Outback Steakhouse, Arbys, McDonalds, to name a few).

Inhalation of flour won't necessarily cause damage. Now, theoretically it won't, but if you inhale it and it gets in your mouth or nose and it gets all the way down to your digestive tract, then it will.

For cross-contamination, replace teflon (pots/pans) and if they're stainless steel you can use the same pots and just wash them carefully. Many prefer just to get separate pots/pans for gluten-free cooking. Also, then you can cook a gluten-free noodle and regular noodle at the same time, etc. Definitely get a new wooden spoon--wood is the worst--and get a gluten-free collander, as it's impossible to clean that well enough.

You can touch gluten and not react, but be careful, of course, that you wash your hands before touching anything gluten-free. Umm...make sure your family knows that they cannot double dip in the peanut butter, since some crumbs from bread might get transported from the knife into the jar. Then when you come along, you get contaminated. We can tolerate about 100 ppm and that's it. 100 ppm is just a crumb or two and the average gluten-free diet does contain a few parts per million since it's impossible for everything to be 100% perfect.

Separate toaster is a must--

For travel in the US, you can usually find the chain restaurants that have gluten-free menus. If you're traveling outside the US, try to post here in the travel section so maybe someone can help you. In European countries, however, they have a greater understanding of gluten-free. In Australia they regularly label items on the menu as gluten-free. The UK, Ireland, Italy, etc. are other good gluten-free countries. Basically, Western/Northern Europe and Italy.

Not all celiacs are thin. More, actually are overweight than underweight.

If you have anymore questions, shoot!

[aljf]

Hi,

Your doctor seems to have given you a lot of wrong advice, which I have found to be the case with a lot of doctors.

#1) Positive bloodwork is *indicative* of celiac disease, but not 100% proof. The only way to really know for sure is to have an endoscopy. The gluten-free lifestyle is a MAJOR change and stress, and, so I would really make sure you get the endoscopy to make sure that that is what the problem is!

#2) If you DO have celiac disease, you should make sure that all of your immediate family members get tested, whether they have symptoms or not. Only something like 50% of celiacs have symptoms--> but the long-term potential harmful effects are still there.

Good luck!

[KaitiUSA]

#1) Positive bloodwork is *indicative* of celiac disease, but not 100% proof. The only way to really know for sure is to have an endoscopy. The gluten-free lifestyle is a MAJOR change and stress, and, so I would really make sure you get the endoscopy to make sure that that is what the problem is!

It depends on the blood tests you have done some are specific for celiac. I was diagnosed through only blood tests done. The doctor didn't even want to do an endoscopy on me because he knew it was celiac through the blood tests. If there isn't damage or they look in a spot where it is not damaged it will come back negative anyway.

[Wandering Hermit]

What do you think about having a second set of blood tests done through a different doctor/lab? Preferably a doctor that does not have his head up his a$$ with regards to celiac disease, like mine.