Can I Ignore My Celiac?

[mayray]

I am stilling dealing with the idea that I need to have a gluten-free diet.

My problem with changing my diet is twofold:

First, I am a huge beer and bread fan. Going gluten-free, while not impossible, will rock my world. My only real symptom of celiac is my symmetrical rash that has been quite persistant for 20 years.

So...if I ignore this diseas, what are my increased risks for bowel cancer and/or osteoporosis?

Also, what is celiac has been a kind of calorie-lowering diet for me? I am afraid that if my lower intestine functions properly I will pack on the pounds.

[gfp]

  mayray said:

I am stilling dealing with the idea that I need to have a gluten-free diet.

My problem with changing my diet is twofold:

First, I am a huge beer and bread fan. Going gluten-free, while not impossible, will rock my world. My only real symptom of celiac is my symmetrical rash that has been quite persistant for 20 years.

So...if I ignore this diseas, what are my increased risks for bowel cancer and/or osteoporosis?

Also, what is celiac has been a kind of calorie-lowering diet for me? I am afraid that if my lower intestine functions properly I will pack on the pounds.

The risks of bowel cancer or any cancer are largely dependent on genetics anyway....

As with something like tobacco .. some people smoke 60 a day for 90 years without ever developing lung cancer... others smoke 10 a day for 5 years and do... and others don't smoke and get it anyway....

If this were the only risk.... its one many might choose to ignore.... just as many people choose to still smoke...

It is however just one of several hundred fatal or chronic complications of celiac....

These include but are certainly not limited to other cancers but also include hypothyroidism or hashimoto's or one of hundreds of really unpleasant way's to die.... and more links seem to be found every year....

The problem is many auto immune diseases are just plain nasty.... and tend to run in groups because one triggers another.

Additionally it can also trigger things like diabetes ...

Neurological illnesses are equally nasty and also linked to celiac... so bowel cancer and osteo porosis although certainly not nice and certainly a risk are just one of the complications...

Perhaps the most important thing is that at the moment you are almost non-symptomatic and the chance is that if you continue eating gluten you will start to develop more symptoms and perhaps other complications and at this point there is no going back...

Its difficult to say the exact risk but its between pretty high and a certaintly somewhere...

[blueeyedmanda]

gfp summed it up, Cancer. That is the one thing that keeps me on my diet. Anyone can get cancer anymore, it is very common, but here is one thing I can do to prevent a form of it. I am taking care of myself.

There are also a lot of others things which uncontrolled celiac can be linked to, other auto-immune diseases, personality changes due to not feeling well, as well as other things.

I know it is hard when you love food you can't have but, what I do is look to the future and I know if I don't keep on this there is not much my future will hold.

Just my two cents.

[happygirl]

https://www.celiac.com/st_main.html?p_catid=7

here are some links to related disorders/diseases with Celiac.

also, an excerpt from Dr. Green's website:

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

Dr Green talks about increased risks:

Open Original Shared Link

And by the way---we really do understand. Our worlds were rocked too. We loved bread and beer too. Now, we just do things differently.

[Jestgar]

  mayray said:

Also, what is celiac has been a kind of calorie-lowering diet for me? I am afraid that if my lower intestine functions properly I will pack on the pounds.

Apparently the rash isn't your only symptom. If your digestive tract isn't functioning properly and you aren't absorbing nutrients your going to start feeling the effects of malnutrition which can include permanent nerve and heart damage.

[kbtoyssni]

You can ignore it if you're fine with slowing killing yourself. There is gluten-free beer available. Try Redbridge by Budweiser or New Grist by the Lakeshore Brewery in Milwaukee. And try making some of the breads in The Gluten Free Gourmet cookbook. They're all pretty good.

I also found that I had many celiac symptoms that I didn't even realize until I went gluten-free. My quality of life has improved so dramatically that there is no way all the beer and pizza in the world could make me go back to eating gluten. And I'll admit, I miss beer, too. That and pizza are the two things I miss. So I experiment with different pizza recipes and have become more adventurous when ordering drinks. Yes, it's going to be very hard at first, and it will rock your world. This is a major life change. And you probably need a few weeks to mourn for what you're losing. I did the exact same thing with peanuts. I spent a few weeks contemplating continuing to eat them because they didn't make me that sick. But in the end I thought about all the people who have to deal with me - friends, family, coworkers - when I'm sick, and I couldn't do it to them. But things get easier, and now I'm so thankful that I feel so much healthier.

[chocolatelover]

This is a very timely topic for me as I just saw a new GI this week. He diagnosed me with celiac without +bloodwork and without +biopsy. I have lymphocytic colitis and double celiac genes as well. I asked him if I could just treat the colitis with medication and not go gluten free. He said that my chance of developing lymphatic cancer is very good if I don't get off the gluten NOW. My GI symptoms haven't gone away yet because both my upper and lower intestines are very messed up (I've only been off gluten for 6 weeks), but symptoms I never even thought to be related have completely disappeared. It finally all makes sense.

Let me tell you, I am (was) a bread, pizza, pastry (any kind--no matter) junkie. I now eat gluten free bread, crackers, corn muffins, waffles, pancakes, cookies, desserts. There are a million things out there to make it easier for us. We're lucky we have the resources we do now--10 years ago the food was crap. Now most of it actually tastes good! Also, once you've been off for a while you really start to not miss it.

The learning curve, as many will tell you, is very steep. But, once you figure it out, it's really not hard at all. There are lots of people on this board who are very happy to help and share information. The recipe section is great for getting ideas.

My family doctor just asked my advice on patients who come in who he thinks should go gluten free for a bit. His suggestion was 2 weeks. I told him that a month is what it will take. It's about 2 weeks for you to learn and get over feeling overwhelmed, but by the end of a month you pretty much have it down.

If you need ideas or suggestions, feel free to email me--I have lots to share and would love to help!

CL

[CarlaB]

Redbridge Beer, Kinnikinnick Bread (in the frozen section) ... the beer is good, the bread you'll get used to. I've literally replaced everything I eat with a gluten-free alternative ... and when people are over they don't even notice (like at Thanksgiving). It can be done, and after a while it will be second nature.

IF your intestine is causing you to maintain your weight because of malabsorption, once it heals, you will not feel as hungry. You probably feel hungry all the time now because of malnutrition. I eat about a third of what I used to eat ... which is still plenty of food ... and I'm not as hungry as I used to be all the time.

You probably have more symptoms than you think. Many people get so used to the way they feel that when they start the gluten-free diet, they are surprised at how many symptoms they never even noticed clear up.

[SunnyDyRain]

I admit, Pizza, Bread, and Pasta will always temp me. However, the huge hurdle is lack of freedom to eat where I want, and where my friends are eating.

I have found the mindset is the most important.

Gluten = posion!

I look at a chocolate chip cookie, and all I think about how crappy I feel when I eat, and how I don't want to be like my mother, 54 and have 3 autoimmune diseases, probally all caused by celiac.

It's important to take care of yourself, espically if you ever want to have kids.

[Susanna]

Hey, Mayray--gfp is right--you will be increasing your risk of small bowel cancer, diabetes, osteopenia, and a host of other bad-actor health problems that can have life-limiting consequences. Here are some ideas:

Try Bard's Tale's Dragon's Gold beer. It's a sorghum based beer (very commonly, sorghum is used for beer making in some other countries). I found it at Whole Foods Market (which is a chain) in Phoenix, AZ. Or, see if your local health food store or grocery store will order it for you. My husband is none-celiac, and a beer snob, and he likes Bards's Tale better than any of his microbrewery beers. It's pricey, but really good.

Anheiser-Busch's Redbride is pretty good--it's much cheaper (comparable to a 6 pack of Fat Tire) and more widely available. I found it at Sprouts (a chain) in Phoenix. Any grocery store should be able to order this for you, and anyway it's supposed to be stocked in regular grocery stores soon.

Bread: All of the gluten-free mixes I've tried are very good. My son and I are celiac, and the rest of the family snarfs down the whole loaf of gluten-free bread if I serve it with dinner. I'd never made bread before, but the mixes make it so easy--eapecially when you make it in the bread machine. You can pick up a bread machine for cheap at any second hand store.

So, you have some do-able options on the bread and beer. But here's something else: you are grieving. We all grieve our favorite old gluten foods when we go gluten-free. Grieving is normal (but not COMFORTABLE). Also, it takes time to adjust to the gluten-free lifestyle. It took me 6 mos to figure out what I could eat, and until then, meal planning, grocery shopping, cooking and eating out or at friends' houses was tough. Now, I'm a year out from diagnosis, and it's SOOooooOOOOoooOOOoo much easier now--really, it does get better--easier--more do-able. Give it a try.

Good luck,

Susanna

[Nancym]

Celiac disease is also being linked to brain damage, all other autoimmune diseases and even things like dementia.

You might be fine for many years but have an absolutely miserable old age.

[aikiducky]

I just wanted to quickly point out that buying a second hand bread machine probably isn't the best idea... Weren't we just talking about second hand gluten?

Pauliina

[pnltbox27]

as a huge beer and bread lover i totaly understand what you are going through as are so many other people on this site, but hang in there its not as hard as it seems. i still have cravings and i still get pretty pissed off that i cant just go to a local tavern and grab a regular beer with friends, man i miss MGD LIGHT , but you gotta do whats best for you. ive lived with celiac for over 25 years or more without knowing i had it. but i do feel better since going gluten free , i still have bad days but im also still learning as i go. im only on the second month of gluten free.sometimes i wish i never went to the doc to find out what was wrong with me.so hang in there were all going through this togather

[beoptimistic]

  chocolatelover said:

Also, once you've been off for a while you really start to not miss it.

The learning curve, as many will tell you, is very steep. But, once you figure it out, it's really not hard at all. There are lots of people on this board who are very happy to help and share information. The recipe section is great for getting ideas.

My family doctor just asked my advice on patients who come in who he thinks should go gluten free for a bit. His suggestion was 2 weeks. I told him that a month is what it will take. It's about 2 weeks for you to learn and get over feeling overwhelmed, but by the end of a month you pretty much have it down.

If you need ideas or suggestions, feel free to email me--I have lots to share and would love to help!

CL

I am having the same dilemma you are about being gluten free and don't be fooled by the quote above--you will miss those foods, and you probably won't get the hang of it in a month. I know my username is beoptimistic, but I chose that more to remind myself to be optimistic--I'm more of a realist.

I was gluten free for 2 months or so and had to hold back tears when my boyfriend and I went out to his favorite bar and I watched him eat Peirogies and order drink after dirnk from the 15 page beer list. The chips and salsa and glass of wine I ordered just weren't gonna cut it. In fact, I visited my family doctor recently and she gave me some advice that I basically interpreted as: "lead a balanced healthy life, don't smoke, don't abuse alcohol, exercise, and eat healthful foods, while avoiding consuming in excess those foods you know you're intolerant to, and you probably won't have to worry about the long term health problems and developing full blown celiac disease." She said I might try to slowly reintroduce some things that I consider important to my diet, like yogurt (i'm dairy intolerant). Well--I totally forgot that advice!!! I had pizza, a hot dog with a bun, etc etc.

I regreted it! I felt awful! I had crazy mood swings and got very depressed. I felt better during the two months that i was gluten free (even though i was having a very hard time adjusting to the new life style) and i didn't realize it until I cheated.

Keep in mind, I'm only 22. I don't even have intestinal damage yet. I have a long line of family members who have problems from it, and I've been diagnosed as gluten intolerant. If I think it's worth it to avoid the health problems--you certainly should since they're not that far from knocking on your door. You already have damage.

Soo--this is a long round about way to saying--yes it's absolutely worth it!!! And I'm not gonna lie, it's damn hard! There are enough encouraging words here to tell you the alternative food options that are available to you, so I won't list them. I will say this though. I cut out all gluten cold turkey. Maybe you should cut it all out over a longer period in order to make it easier. Really, it's a matter of making yourself a priority. Without your health what do you have? I know it's corny but consider this:

"When health is absent, wisdom cannot reveal itself, art cannot manifest, strength cannot fight, wealth becomes useless, and intelligence cannot be applied." Herophilus.

[Fiddle-Faddle]

  beoptimistic said:

I am having the same dilemma you are about being gluten free and don't be fooled by the quote above--you will miss those foods, and you probably won't get the hang of it in a month.

I disagree, O Optimistic One!!!!

I have not yet found a food that I crave that I haven't been able to make gluten-free that tastes just as good as the gluteny original (and in some cases, better!).

Now, admittedly, I am not a pierogy popper, so I can't help you there, unless you want to make a sort of pierogy lasagna. Come to think of it, that might work really well--just use Tinkyada rice lasagna noodles, and layer it with pierogy ingredients (mashed potatoes, onions, cheese, butter, etc.) and bake!

But cookies, cakes, breads, pancakes, biscuits--I've been able to make them all from scratch (can't take credit for the recipes, though, got most of 'em out of cookbooks), and my gluten-eating children scarf them down and say that they're the best ever. And they're not old enough to be polite about it!

What are you craving? I'll find you a recipe!!!!

[beoptimistic]

Hmm, I guess I left out the part about being soy/cassein/yeast/egg and gluten intolerant.

oops.

But, I will say, i have been baking up a storm. It's not really about the food per se. it's about being in a restaurant and going to bars with friends, or going to a birthday celebration in a friends dorm room, and generally leading the life of a college student, and not being able to fully partake in what the people are enjoying around me. My friends know about my gluten intolerance but they forget. On my 22nd birthday, they brought me a cake, all decorated in green icing and everything (cuz it was also St Patrick's Day) I had to sadly remind them i couldn't have any of it. It's stuff like that.

In my own kitchen--I do ok enough. Out in the world it's a totally different story.

[lonewolf]

Boptimistic -

There's a recipe on here somewhere for gluten-free pelmini. Just do a search. I make them fairly often and they are really similar to pierogies. There's very few things you really have to do without once you get the hang of it.

[lcbannon]

The going out is proving tougher for me too. There are however a number of national chain rest. that have gluten free menus that help make it easier. My 23 yr old daughter is going gluten free and it is VERY hard for her. Plan to take her to Outback sunday- they even have a dessert she will love- The Thunder Down Under---

Speaking as a 45 yr old with a number of autoimmune disorders and generally crappy health, had I been able to change eating habits 20 years ago and not been in this shape now. I gladly would have.

Good luck and don't give up.

[Fiddle-Faddle]

  beoptimistic said:

Hmm, I guess I left out the part about being soy/cassein/yeast/egg and gluten intolerant.

oops.

In my own kitchen--I do ok enough. Out in the world it's a totally different story.

You get to choose the world--and friends--that you live in, to a great extent. If your friends are so brainless or care so little that they forget that you have a major food intolerance, either get new friends, or communicate better with the ones you've got.

By all means, go out with your friends--and drink something other than beer. The purpose is to enjoy spending time with your friends, right? Not to see who can ingest which chemical. Go to dorm room parties, and bring whatever gluten-free goodies you feel like eating, so that you can "fully participate." If you were allergice to peanuts, you wouldn't be whining about not being able to eat their peanut butter sandwiches, you would just bring whatever you CAN eat, right?

As far as your other intolerances, you might check out Roben Ryberg's The Gluten-Free Kitchen, which is an entire cookbook based on using only cornstarch and potato starch, and all of her bread recipes are either eggless or egg-optional.

You may find that, after several months of being gluten-free (really gluten-free, no falling off the wagon!), your other intolerances might very well resolve, as they may have been caused by the leaky gut caused by your gluten intolerance.

[SunnyDyRain]

  Fiddle-Faddle said:

Now, admittedly, I am not a pierogy popper, so I can't help you there, unless you want to make a sort of pierogy lasagna. Come to think of it, that might work really well--just use Tinkyada rice lasagna noodles, and layer it with pierogy ingredients (mashed potatoes, onions, cheese, butter, etc.) and bake!

But part of the perogie goodness is the potato dough!

mm.. now I want perogies!

[sfm]

  aikiducky said:

I just wanted to quickly point out that buying a second hand bread machine probably isn't the best idea... Weren't we just talking about second hand gluten?

Pauliina

I was going to say the same thing! I would definitely be wary of using a second hand bread machine..

[sfm]

  lcbannon said:

The going out is proving tougher for me too. There are however a number of national chain rest. that have gluten free menus that help make it easier. My 23 yr old daughter is going gluten free and it is VERY hard for her. Plan to take her to Outback sunday- they even have a dessert she will love- The Thunder Down Under---

Speaking as a 45 yr old with a number of autoimmune disorders and generally crappy health, had I been able to change eating habits 20 years ago and not been in this shape now. I gladly would have.

Good luck and don't give up.

The Thunder Down Under is amazing - and Outback has become my favorite restaurant. Their servers are obviously given a great deal of information about dealing with food intolerances, and they are willing to go out of their way to have something prepared the way you would like it. I also had another desert from there, caramel apple oblivion (without the apples or croutons), and they put fresh strawberries on it in place of the apples. They're very accommodating.

[BFreeman]

  sfm said:

I was going to say the same thing! I would definitely be wary of using a second hand bread machine..

I agree. If you can't get the gluten out of a scratched teflon pan, there is no way you could remove it from the insides of a bread machine. I have one in my basement that I won't use again. I'm even afraid to use my Kitchen Aid mixer that I used before, and I really need one; I've burned up two hand mixers making bread.

BF

[mayray]

I am overwhelmed by the support and response I have gotten. Thank you all so much.

My situation is heightened by the fact that I live in the middle of nowhere and don't have a ton of cash to spend on anything gluten-free. I do have a small local health food store and I will head down there today to see what I can find. In terms of making non-gluten bread, what kind of flours do y'all recommend?

After my beer supply runs out, I am going gluten-free for at least 30 days to test it out. I don't want any more kids (I'm 41 and have one child) but I do want a healthy-as-possible middle-age and end of life. Thank you all for the input and support...

[Fiddle-Faddle]

I don't know what state you are in, but I would suggest that it is well worth a few hours' drive to get to a city that has an Asian food store. There you can buy white rice flour, sweet rice flour (also called glutinous rice flour, don't be fooled by the name, it has NO gluten), corn starch, tapioca starch, and potato starch for 69 cents a pound. The health food store will charge you 10 times that amount, and even ordering over the internet adds up, as you have to pay delivery charges (though it might be worth it to buy brown rice flour if you can't find it in your supermarket).

So make an afternoon of it, and stock up!

And, maybe you could donate your beer to a worthy cause and get Redbridge instead? You never know when one more beer--or slice of cake--or sandwich--or pasta meal--might be the one that sends your immune system over the edge, and then you will have major autoimmune issues, which might not ever resolve, or may take months of gluten-free to resolve.

Is it really worth the risk, especially if you already know it's a problem for your body?

It's like someone allergic to peanuts wanting to have a last fling with a jar of Jif....Move on with your life already!