My Father Was Just Diagnosed With Celiac...

[raininblack]

My father is 38 and was just diagnosed with celiac disease. He developed polyps and ulcers and the doctor says he'll get better if he abstains from gluten. He never had the really obvious signs of the disease, but in retrospect there are definitely a few things that can be attributed to it, like fatigue and random rashes and mouth ulcers. Apparently all of his villi(?)are destroyed, but he's overweight... My aunt, on the other hand, was diagnosed in her mid-twenties, and it was so bad she was hospitalized and was down to 90 pounds before they realized what it was (wasn't as well-know then).

I'm 20 and was diagnosed with IBS-C about a year ago, but I'm not content with that diagnosis, since it doesn't really help much. Lately I've had issues with heartburn, knee and joint pain and fatigue. My doctor did some bloodwork, but aside from my thyroid and iron levels I'm not sure what else he tested for but all of the numbers were normal. I hope it's not celiac disease because it'll definitely be hard to adjust to the diet, but at the same time, I want a valid diagnosis for my problems, if that makes any sense.

That being said, I've been reading on blogs/forums and apparently a lot of people get tests with inaccurate results and this makes me wonder if getting all of the testing done is worth the trouble, maybe I should just try cutting out gluten for a little while and see if it makes a difference. Any thoughts? I'd definitely appreciate any advice (SO glad I live in the age of the internet).

[ravenwoodglass]

Since you have family members with celiac there is a good chance you have it too considering the symptoms you are having. Do get your doctor to run the blood work and if you choose to do the endo have it done before you go gluten free. After all your testing is finished then you can give the diet a good strict try no matter what the test results and see if it helps. The diet does take some getting used to but the alternative is having a signature like mine and others who went years before diagnosis.

[pricklypear1971]

I think you need to get your hands on your blood work and see if a full celiac panel was run.

For thyroid, they need to test tsh plus free t3/4 levels, plus thyroid antibodies. Also, most doctor's use the lab "normal" range as normal when most thyroid specialists who treat thyroid issues favor it 2 and below. Get your lab results.

You are young with a history of Celiac in your family. You are at extremely high risk, comparatively speaking, especially if you carry the genes. I'd request gene test, it isn't definitive but will give you a better idea if you carry the most common Celiac genes.

Is try for an official dx if I was you. You're in a good position to have doctors take you seriously given family history.

[sa1937]

You've already gotten some good advice from the previous posters. While the diet certainly has a learning curve, not all of us have found it to be that difficult. But by all means get tested before you go gluten-free.

You might also want to check out these Open Original Shared Link from the University of Chicago Celiac Disease Center. Lots of useful info. If a first-degree relative has celiac, you have a 1 in 22 chance of having it, too.

[raininblack]

Thanks everyone, I made an appointment to go get tested soon!

There's one other thing I'm not sure about though and it would be awesome if someone could clarify it for me.

From what I've read, even a minute amount can do damage, and I've been reading threads about people buying gluten-free shampoo just in case some got into their mouths while showering. Does this mean a bread crumb is JUST as damaging as an entire loaf? Giving up all of my favorite foods is overwhelming but the thought of having to buy gluten-free dog food just in case my dog kisses me (another thing I read) is incredibly depressing.

[pricklypear1971]

The severity of the damage (for most) wouldn't be as severe (hopefully not the pain, either) but a crumb is enough to make the body start an autoimmune attack.

I've never intentionally glutened myself or seen what glutened me, so it's hard for me to give a personal example. One time exposure triggered an AI attack that i could tell lasted a few months. Other times it's been a few weeks.

[tarnalberry]

Yes, contamination can cause as much damage. Well, near as much as makes no difference. If you're house is flooded with two inches of water for a week or two feet of water for a week... either way, your floors are ruined.

The good news - gluten free (celiac "gluten free", not pet food "gluten free", so, really grain free) food is FAR better for your dog anyway!

[frieze]

Thanks everyone, I made an appointment to go get tested soon!

There's one other thing I'm not sure about though and it would be awesome if someone could clarify it for me.

From what I've read, even a minute amount can do damage, and I've been reading threads about people buying gluten-free shampoo just in case some got into their mouths while showering. Does this mean a bread crumb is JUST as damaging as an entire loaf? Giving up all of my favorite foods is overwhelming but the thought of having to buy gluten-free dog food just in case my dog kisses me (another thing I read) is incredibly depressing.

It is likely that your dog would be better off gluten free any way.

[Cara in Boston]

It sounds overwhelming at first, but after a while, you get used to it. I have yet to find a favorite food that I can't recreate in a gluten free form. Yes, it takes more time and planning, but your continued good health is worth it.

IBS would be unacceptable to me too . . . keep looking for the cause, not just a label for your symptoms.

All first degree relatives of people with celiac disease should be tested - regardless of symptoms. Since you obviously have symptoms (and I bet there are more that you are just not aware of or haven't noticed) you should be tested right away. If the tests are negative, a final test is the diet . . .give it a try for a couple of months and see if you don't feel much, much better.

If you figure out you don't have it, you still need to be tested regularly (my doctor said every 2 years for my kids) . . . it can develop at any time.

Cara

[GFinDC]

HI Rainb

gluten-free dog food is better for your dog, if you can find it. The thing is dogs lick their fur and then you pet them and get gluten on your hands. Plus they lick your skin etc. Yes, small amounts like this could make you sick if they get into your mouth somehow. Some people are more sensitive than others, and some have dermatitis herpetiformis which is the skin rash associated with celiac. For those people avoiding gluten in shampoos is more important. But it isn't a bad idea to get rid of it for anyone. If you wash your hands before eating, flossing etc then it should help. People sometimes get more sensitive over time also.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Celiac Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...180#entry726053

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

[raininblack]

My dogs would definitely be healthier on a primal-ish diet (well, we'd be too) but I still live with my family so I don't have a choice in whether or not we have gluten-free dog food. If it's more expensive I doubt they'll buy it. I'm barely going to be able to afford produce and meat...I'm not going to be able to afford to make anything close to what I love, too many special expensive ingredients to find/buy. It's just gonna have to be chicken (not deli meat though ) and lettuce and bananas and rice and repeat.

Apparently I'm not going to be able to go out to dinner with friends or if I go I'll just have to sip water unless I know for sure something is safe (heck, the server might touch some bread and then touch the glass or the straw and it's all over). I'll have to bring celery sticks or something if I want to go to an event because I won't know if I'll be able to eat there. I guess when I turn 21 I'll have to bring my own beer to the bar. -.-

Now I've been reading that after people remove gluten from their diets they can develop intolerances to other foods, not to mention some foods can cross-react. And once they go gluten free they start having severe attacks if they slip up/accidentally ingest some, and I know it's not an allergy but isn't that a little bit like a tolerance? And all it takes is a tiny amount to make someone feel terrible for days/weeks/months? And some people follow the diet perfectly and still have problems? Psssht. I know it's an all or nothing diet but I'm just gonna go somewhere in between and take my chances. Sorry for ranting. I appreciate all of your posts. Thank you.

[pricklypear1971]

You can't go "somewhere in between" as a Celiac, and hope for recovery.

I know the idea of this is freaking you out, and you'd rather just not deal with it. I get it. But if this your issue you're going to have to. Untreated Celiac disease can lead to severe health issues like organ damage, cancer, infertility - not to mention loss of quality of life including hindering your career and relationships.

You can eat out at places that can prepare safe food. A food handler touching someone else's plate isn't necessarily going to get you. I eat out safely all the time.

Yes, you will change your lifestyle somewhat. You will learn self control and planning. You can do it. We all do it, every day.

You don't have to buy expensive gluten-free processed foods. Aside from gluten-free grain mixes for baking (and I don't do many grains), and pasta I buy my food at the regular grocery store.

You aren't in this alone. Your Dad is going through this too. I'd assume you could expect support at home since your Dad will be going gluten-free?

[ravenwoodglass]

You can't eat just chicken, rice, lettuce and bananas and be healthy. All vegs are gluten free as are fruit in their natural state. Frozen veggies are cheap if you are afraid of waste with fresh ones. Thai Kitchen rice noodles are safe, cheap and make a great inexpensive quick meal with some veggies and perhaps some beans thrown in. They are also good with pasta sauce. There are quite a few mainstream items that are gluten free so you don't always have to go with specialty gluten free items. Tell us what your favorite foods are and we can give you some suggestions for replacements.

I know the idea of having to deal with this is hard. Many of us also go through withdrawl which can make us depressed or irritable. It will pass. We are here to help in any way we can.

[raininblack]

I currently take digestive enzymes and I get probiotics through yogurt and cheese, but if I got rid of dairy that would stop. I tried taking a pill form of probiotics and it was awful, never again. I read that your gut bacteria adapts to what you eat and most of the bad ones eventually die off if you quit feeding them, so I figured if I eat well most of the time I'd be okay. Before all of this I was planning on going to the doctor for an SIBO test anyway, I guess I should ask about any other comorbid conditions too. I take a multivitamin and I plan to start taking Omega 3's.

My dad's only been on the diet for a few days and I'm not sure if he will continue it, to be honest. My mom's trying to find things he might like but he hasn't liked anything so far. My mom and my two little brothers plan on continuing the way they eat...

I guess I'm just having a hard time accepting "never" for an answer. I don't expect a full recovery now, especially since it seems like some people go all-out and still can't recover. I just don't understand why a little here and there would be SO bad if my diet was great most of the time. I don't really plan on trying any more gluten free packaged foods (ew) and besides I'm sure they cause inflammation and other issues too... Maybe I just need more time to come to terms with it.

[pricklypear1971]

I know it's hard to accept. Really.

Celiac is an autoimmune reaction. While it may FEEL like a digestive issue for some (and it is in the way it obviously expressesitself) - like eating bad fish or a food that doesn't agree with you, it isn't.

Eating a little bit of gluten, once in a while, is Iike eating cyanide once in a while. Gluten is literally poison to a Celiac. Eat enough poison once in a while and well, ya know...

The autoimmune reaction is dangerous because of various things, but the biggest culprit, generally, is inflammation. And the attack on organs. A little bit keeps that low inflammation smoldering, eating away at body systems and organs.

You can eat the cleanest diet on the planet and it will still trigger an AI reaction in a Celiac if it is a gluten containing diet.

You can't use the extreme examples - super sensitives and refractory Celiac as an excuse not to adhere to a gluten-free diet, if it's your issue. You're talking about a small percentage of Celiacs. There's no reason to believe you'd be one of them until you tried the diet.

The first year of gluten-free is tough. Especially if you see others not adhering to the diet. Ultimately, your health and your life is your responsibility. You would be fortunate to be dx'ed so young and to have a chance to heal your body with a chance of not developing long-term complications that others deal with when dx'ed later.

[tarnalberry]

I guess I'm just having a hard time accepting "never" for an answer. I don't expect a full recovery now, especially since it seems like some people go all-out and still can't recover. I just don't understand why a little here and there would be SO bad if my diet was great most of the time. I don't really plan on trying any more gluten free packaged foods (ew) and besides I'm sure they cause inflammation and other issues too... Maybe I just need more time to come to terms with it.

Ask someone with an anaphylactic allergy if a little here and there isn't so bad.

Some things to consider:

1) the MAJORITY of celiacs who eat strictly gluten free DO recover. Not only is it the majority of members on this site (and this site is NOT a representative sample of celiacs, by any stretch of the imagination), but it is the majority of the diagnosed population. There is very, very little reason to believe that you will not recover while gluten free.

2) The immune reaction to gluten is somewhat self-sustaining in the intestines. That means that when you eat gluten one day, your body is continuing the immune response for - on average - the next fourteen days. Then it needs to recover. Getting gluten even every other week is going to put you in a state of near-constant auto-immune reaction. Getting gluten once a month gives your body very little time to recuperate, let alone stay healthy.

3) Gluten free packaged foods are hit or miss. Some suck, some taste virtually identical to "the real thing". Much of this depends on *what* you are trying to replace. You don't need them, of course, but you may find, over the years, that you find ones that you don't mind. (For instance, my daughter and I love Trader Joe's edamame flavored rice crackers. They're gluten free. I know a number of other people, with no concerns regarding gluten, who happen to love them too.)

The diagnosis is a bit of an emotional roller coaster. Most people go through all of the standard stages of grieving over this massive change. It's normal, and it's important to give yourself the space and the grace to go through it. But it's also important to stick to the diet so you can be as whole and healthy as you have the potential to be.

[ravenwoodglass]

My dad's only been on the diet for a few days and I'm not sure if he will continue it, to be honest. My mom's trying to find things he might like but he hasn't liked anything so far. My mom and my two little brothers plan on continuing the way they eat...

Steak and potatos are gluten free, baked chicken is gluten free, eggs and bacon are gluten free, stews and soups are gluten free when homemade, if you take some of the potatoes from the stew and cut them real small they will cook down and thicken it. Fish is gluten free, shrimp is gluten free. Some Progresso soups are gluten free. Name brand Chex has many gluten free varities, Dinty Moore beef stew is gluten free, tuna is gluten free. Lays potato chips are gluten free. Tostitos are gluten free. Junior Mints, Raisenettes, Snickers, Jelly Bellies are gluten free. There is much more that is safe that can be found on your regular grocery shelves and we can guide you to the items if you tell us what you like. Kraft and Unilever products label clearly and if you live in an area with a Wegmans they label all gluten-free products clearly to make it easier.

One mistake people new to the diet make is to try to many of the specialty products too soon. It is best if we can to wait to try some of the breads and other baked goods. After a bit try some like Udi's, Rudi's or Grainless Baker products. There are also good baking mixes, Tom Sawyer flour mix is good for stuff like scalloped potatoes and Pamela's mix is good for muffins and stuff like Apple Crisp.

If you're going to have a mixed home please be sure to learn what you need to do to keep you safe from cross contamination. It is also advised that all family members be tested even if they don't have symptoms. Since your dad was diagnosed your brothers need to be tested also. It wouldn't be a bad idea to have Mom tested also it isn't as unusual as you would think to have both parents be celiac when a child is.

It does get better and the risks of not following the diet are severe even for those of us who were diagnosed and didn't have symptoms.

[come dance with me]

When my daughter was diagnosed, I was tested, my parents were tested and both brothers were tested. My mum tested positive, I did not, my brothers did not, but my nephew showed signs so my older brother removed gluten from their house too.

[nora-n]

As for finding things to eat, think low-carb cookbook!

Low-carb is mostly gluten free anyway.

The whole family can eat those things.

you do not have to buy all those special gluten free (starchy) items.

But first you need to get tested properly.

[Celiac Mindwarp]

And get tested before going gluten free!!!

I know others have said it, but I am in the position of having given up most gluten years ago when celiac never crossed my mind, and now am struggling to be taken seriously without a 'real' diagnosis. I am negotiating to get my kids tested, and trying to pursuade my Mum.

Good luck, I am new to this and I know how hard it can be to get used to.

We can do it!

[GFinDC]

Maybe you and your Dad can help each other stick to the gluten-free diet and find good things to eat. Doesn't it sound like fun to tell your Dad what he can eat? If you want some ideas for for meals take a look at the breakfast, lunch, and dinner threads in my earlier post. There's a dessert thread in there too. If you like snacks for some strange reason, you can do a search on snack ideas and get lots of them. Or a Halloween candy search will turn up lists of gluten-free candy. The recipe section is full of gluten-free recipes for anything you can think of. Maybe your mom would like to check it out.

Just like we learn to eat other foods as we grow up we can learn to eat different foods later. There really is a lot of choice in foods to eat, it just takes a little looking around with an open mind. Many of the foods you have eaten your whole life are naturally gluten-free. Baked goods are the things most likely to be a problem. You can try Mission brand corn tortillas as a cheap sub for bread. They work well for wraps. There are also rice tortillas available and Rudi's has a new rice rap on the market.

GIG (Gluten Intolerance Group) has a program called GFRAP that certifies restraunts to serve gluten-free food. You can look up their site and find listings of certified places to eat.

Open Original Shared Link

[raininblack]

The good news is, my dad says that he's planning on sticking to the diet. The bad news is, he started smoking again after quitting 3 years ago. Before he got the test results he said if it was cancer he was going to start smoking again but I guess this was bad enough to make him want to do it anyway. My mom's furious and normally I'd be upset too but after reading extensively about this disease I really don't blame him, I kind of want to join (mostly joking). His appetite will decrease and most food will taste like crap so he won't want any of it anyway. His esophagus had so many ulcers that the doctor was worried he'd hemorrhage if they took a biopsy so I know this isn't the smartest idea but I *think* this is just a phase and hopefully he doesn't do too much damage before he gets out of it. If I have it too I guess being miserable together will be a bonding experience if anything. I'll definitely direct him to the gluten-free candy though, I'm sure he'll like that.

O.O There will only be 5 different restaurants I can eat at withing 25 miles of where I live, 3 within 10 miles. That's worse than I thought. :/ This makes me wonder how I'm going to be able to date anyone or do anything else normally or be able to live without worrying and being paranoid about everything constantly, I'd be better off just staying in my room. I'm still not sure if I plan on following the diet or not, I'm just going to wait and see how I feel once I get an actual diagnosis...

Staff of life my ***.

[nora-n]

About dating, you might actually find someone who also wants to eat gluten free!

But many ordinary restaurants can accommodate gluten free if you ask them. Even some pizza places.

The smoking thing is not so good....

Some with celiac also have ee, eosinophilic esophagus, inflamed esophagus. They might need to eliminate some other food stuff they are allergic to. I had to change toothpaste to a natural salt toothpaste.

[shadowicewolf]

On the dog food thing, my toy poodle is allergic to whatever they put in there (it makes her have seizures) so she eats mostly chicken and rice with veggies (she adores peas and carrots, and green beans and whatever veggie you give her). Or whatever meat we have cooked up that isn't spiced (like ground beef). shes as healthy as a horse and going strong at 14 years old. Her vet approves of it as well and says she has a six pack lol.

[raininblack]

Did anyone here have a problem digesting gluten-free substitutes at the beginning? I was wondering if they're bothering my dad because he hasn't healed yet and maybe later on he'll be able to handle them. And does anyone have any gluten-free beers they can recommend?

I don't think I'm gonna convince my parents to give our dogs real food, but I'm sure it's the healthiest. My black lab has allergy issues so my mom just sticks to one brand of dog food. Occasionally we have to give him fish oil if he starts scratching. He's also sensitive to the laundry detergent we use... Our mutt seems perfectly fine with everything though.

My doctor appointment is today at 4:30..we'll see what happens. Thanks everyone.