Why Can't She Have It In Moderation?

[JustForJen]

My wife was recently diagnosed with Celiac's disease and as the always concerned husband I have been researching all weekend trying to learn everything I can. As far as I can tell she has to quit gluten for good. I have not read or seen anything that says she can have cake on her birthday or stuffing at thanksgiving. Moderation does not apply. I would like to be able to tell her that "yeah you can have cake but it'll make you sick for the rest of the night but tomorrow you will fell fine" at least have the option to indulged every so often and suffer the consequences. Is that accurate? Will she just have her symptoms for a short period of time or is their some other long term consequences that result from the occasionally consumption of Gluten. I cannot find any information referencing one way or the other. Additionally it will be at least two weeks before we can get her into her new Gastroenterologist as we are moving, so I cannot have this conversation with a professional for at least some time.

Thanks

[kenlove]

From being on the board here for a number of years, I can say that most of us are very different and have vastly different levels of sensitivity. I would never think of cheating once and accidents that occasionally happen usually lay me up for 3 or 4 days in intense pain and misery. So I don't take chances. I can't walk into bakeries and my wife cant have flour in the house. If she wants to make a cake in her own pans, she has to mix things outside although usually she will cook them at our daughters house. It will be a change of lifestyle that you have to work on together. I was sick once when the colander was not washed well after she made her own noodles in her own pot. Sick for 3 days because of a piece of dried spaghetti when I used it -- I had not gotten around to getting my own -- In short its not easy and it takes awhile to learn - much comes from experience -- It also takes awhile to learn the degree of sensitivity she will be to gluten containing items and cross contamination.

Wish you both luck

ken

My wife was recently diagnosed with Celiac's disease and as the always concerned husband I have been researching all weekend trying to learn everything I can. As far as I can tell she has to quit gluten for good. I have not read or seen anything that says she can have cake on her birthday or stuffing at thanksgiving. Moderation does not apply. I would like to be able to tell her that "yeah you can have cake but it'll make you sick for the rest of the night but tomorrow you will fell fine" at least have the option to indulged every so often and suffer the consequences. Is that accurate? Will she just have her symptoms for a short period of time or is their some other long term consequences that result from the occasionally consumption of Gluten. I cannot find any information referencing one way or the other. Additionally it will be at least two weeks before we can get her into her new Gastroenterologist as we are moving, so I cannot have this conversation with a professional for at least some time.

Thanks

[seashele2]

A lifetime of being completely gluten-free is the only treatment for celiac and other gluten-caused diseases. In our family, I am celiac, my uncle is celiac, my sister-in-law is celiac and my daughter is celiac. She got the genes from both sides of the family. My sister-in-law used to do the part-time gluten-free thing and couldn't figure out why she was having so many health problems. Her new gastro finally got through to her that celiac is a full-time disease and the treatment also needs to be full-time. My uncle cheats on his diet frequently and is also having problems. My gastro explained it like this: A type 1 diabetic (autoimmune disease) can not take insulin part-time and stay healthy. A celiac (autoimmune disease) can not eat a part-time gluten-free diet and stay healthy either.

Celiacs consuming gluten might only feel sick for 3 or 4 days, but the damage it causes will take weeks or months to heal. I have been gluten-free for 6 1/2 years and I have cake every birthday and stuffing every Thanksgiving, but they are gluten-free. Now, more than ever, there are awesome gluten-free mixes for cake and recipes for gluten-free stuffings. Tremendously more than there were even 3 or 4 years ago.

[cahill]

Moderation does not apply, strict adherence to a gluten free diet is the prescribed course of treatment for a diagnosed celiac. There are possible long term consequences if one does not say gluten free. Malabsorption of vitamins and minerals can cause major vitamin and mineral deficiencies ,leaky gut,cancer, gluten ataxia to mention just a few.

This is a link to a very good web site that will help you and your wife with gluten free baking

Open Original Shared Link

the site has some great recipes for sweets

[Juliebove]

She can have gluten free cake and gluten free stuffing. If she has the wheat based stuff, she could not only be sick for many days (I don't think most people feel better the next day) but would be damaging her body further. Also some people do not notice the ill effects but just as much damage occurs.

Yes, mistakes will be made and she will at some point accidentally ingest gluten. She might misread a label and think something is safe. I know I have done that with my daughter. Or she could eat something that has been cross contaminated. Or she might eat food from some well meaning person that really isn't safe. It will happen at some point and she will have to deal with it.

But to deliberately eat gluten just because it is a holiday? That's sort of like killing yourself but slowly and painfully.

[Takala]

Some people such as myself, instead of getting "sick" per se with gut problems, get neurological symptoms mimicing MS. My eyes will have more trouble tracking together and my sense of balance goes off. Years before this, I had a continuous series of buzzing/numbness in my muscles in my upper arms/shoulders and numbness in my hands and feet, plus muscle spasms. My one foot dragged and the other one was weaker. My arthritis would also flare up dramatically. My lower back always hurt and was very stiff, as was my neck. My c- spine is permanently damaged from this, related auto immune arthritis, and the previous malnutrition. It is a miracle I can pass for normal and do things, but I have been doing physical therapy and some yoga balance exercises for about 20 years, more or less.

I don't know about you, but this neuro stuff is not an appealing sort of holiday sensation to anticipate over somebody else's convenience food. It's not like gluten free cake and bread cannot be made. I guess another analogy would be it's like telling an alcoholic to go ahead and have a few beers on the weekends anyway, because everybody knows it's only the hard liquor that counts.

[mushroom]

Hey, lighten up a little bit there, JustForJen. This is not a sentence that has been imposed, it is just a different way of eating. There are very few things that can't be made gluten free. Well, maybe mille feuille,.... But there's precious little that you really have to give up except the stuff that is made the gluten way. Think of this as an eating and cooking adventure, there are thousands of recipes on the internet for practically anything you can think of made gluten free. Time to expand your taste buds and become more adventurous. But hold off a little while on all the gluten free processed foods and wait until your taste buds have forgotten what gluten tastes like, because that is what you were raised on. Then take your newly cleansed taste buds into the gluten free world. Just as with gluten foods, there will be some things you don't like, but you will be amazed how good things can taste. My proudest moment was when a local who prided herself on her baking skills said "OMG, who made this delicious macaroon cake?" And when I admitted I did she got this look "Is it gluten free?" Someone else said to me after staying at our house for 3 nights, "I'm not afraid of gluten free food any more." That one cracked me up.

So don't cry. Grieve, yes, for a way of life that is gone, but better times lie ahead. Your pollyanna message for the day.

[K8ling]

My uncle just died at 45 from colon cancer.... from undiagnosed Celiac.

It is not good. She needs to stop it all the time.

[lynnelise]

Trust me, eating a piece of "real" cake on my birthday would not be an indulgence I'd want to make. Spending the day in the bathroom and the next week fatigued with joint pain, tingling in my arms and legs, canker sores, and a rash does not make for a good birthday.

The good news is you can fabulous cakes gluten free. I made the best cake for my daughters birthday. Chocolate roulade w/ cream cheese icing, covered in chocolate ganache! No one had a clue it was gluten free! Everyone said it was the best cake ever and it looks quite fancy!

[tea-and-crumpets]

Sure, she can have cake and stuffing -- she just has to have gluten free cake and stuffing. Pretty much anything she wants can be replicated. I can make cakes now that even my gluten eating family think taste just as good and the stuffing I made last Thanksgiving tasted just like my mom's homemade.

It's just food, you know? I'm not willing to risk my long-term health for twenty minutes of pleasure.

[Fire Fairy]

I too have neurological issues with gluten. It isn't worth it to me to take any chances when I think something might be cross contaminated so I would never consider eating something filled with gluten. Observers may not necessarily see the damage done to us but it still happens and as was pointed out by another poster it can kill.

Katz Gluten free online bakery makes awesome cupcakes. This means it can be done. You can make/find a wonderful gluten free cake for your wife. No doubt stuffing can be made yummy also.

[Camp Laffalot]

You can BOTH have a lot of fun on this new culinary adventure! My husband is not celiac, but he has become a Pamela's Cookies addict right along with me. He also LOVES the granola from The Bakery on Main. There are sooooo many wonderful gluten free foods out there! This is a fabulous opportunity to experience NEW and very tasty food! Enjoy!

[Waverlywoods]

it is very wise to go completely gluten free. The damage the immune system does the human body, in response to gluten is cumulative. Accidental exposer is likely, so your efforts should be focused on that. Futhermore once the body has been worn down to certain point from this and other stressors, people often develop other intolerances such as dairy, soy, nuts, who knows what? This situation can get very dicey and it can sneak up on you. So by all means... Everyone goes through a stage I think where they can't imagaine how just a little bit of gluten would really hurt every once in a while. This attitude is a normal response, but ultimately it is very dangerous

[ravenwoodglass]

Your a great husband to be looking out for your wife. Celiac is autoimmune and injesting gluten causes the antibodies to flare up. Her reactions to 'just one piece of cake' or just a bite of something or even a 'deep' kiss from you after you have consumed or drunk something with gluten will cause those antibodies to start coursing through her body. For quite a few of us just a little bit of gluten after being gluten free causes an even more severe reaction than what we were experiencing when we were diagnosed. It can take quite a while for that reaction to die down, for me the time frame is over 3 weeks of misery. It isn't just a stomach reaction it can effect the entire body and any organ. It just isn't worth it. There are so many good gluten free alternatives available for everything from pizza to cake and cookies as well as bread. Read as much as you can here and ask any questions you need to. If she is firmly diagnosed you don't need to wait to see the new GI to get answers, if he or she is not well experienced with celiac you are likely to just hear that she should avoid gluten. There is a lot to be learned so read and ask. You'll get the hang of it in no time.

[angel9165]

On my 6th month of being gluten-free and I am one who really, really likes to eat. I have cake all the time, just without the gluten. I have found that when I take my gluten-free treats, they go quicker. People tell me the chocolate is more chocolaty and I don't mind sharing my "special food". Gluten free stuffing isn't a big issue either. For that matter, I even got my gravy at thanksgiving (compliments of corn starch) so I don't feel like I'm totally missing out. I won't lie...I crave deep dish pizza w/ a cold bud select but I would not tempt fate. Your wife will find that the longer she goes w/o gluten, the more intolerant she will become. I did ALL my cheating the 3 weeks from diagnoses to the appointment w/ the GI doc where he told me I couldn't. Since then, I've been gluten ed a few times but not intentionally. You are a good husband to want to take care of your wife and make sure her taste buds are happy but this is one thing that all you can do is support her through the transition. I wish her the best as she gets through the initial shock of being without and may she quickly learn the joys of good food w/o gluten. =)

[ravenwoodglass]

I won't lie...I crave deep dish pizza w/ a cold bud select but I would not tempt fate.

Have you tried Gluten Free Pantry's French Bread Mix? It makes a great deep dish pizza crust or two thin ones. Even the gluten eaters I know think it's great.

[SGWhiskers]

Stick around on the forum and you will learn a lot of information about research, advice, coping, and cooking. You are a great husband for doing research for your wife.

When I'm describing cross contamination or cheating on the Gluten Free diet, I like to make a distinction between reactivity and sensitivity.

All celiacs are highly sensitive to gluten, meaning they will have microscopic damage from even small (think crumb size or less) amounts of gluten. There is a study floating around out there that states that 90% of celiacs will have intestinal damage from 20 parts per million of gluten contamination in their food. The other 10% will have damage from smaller amounts of gluten. As celiacs, our sensitivity levels are similar. Essentially zero tolerance to avoid intenstinal damage.

Then there is how a person subjectively reacts to the gluten. How does it make them feel? Some people get a little gassy from a random crumb. Others, feel pain for days or weeks from foods processed on the same lines as gluten foods. There are some celiacs who stop reacting to gluten altogether after a period of time (however they still have intestinal damage from eating gluten). Everyone's reaction is different. People who are regular cheaters on the diet will often not notice how they are reacting because it just feels normal for them. For this reason, I often advise people to be extremely strict in the beginning of the diet, so they find out how good they can feel totally gluten free and then when they add back slightly riskier foods like gluten-free oatmeal, grains, foods from shared lines, restaraunts, and friend/family cooked meals, they will be better able to tell if they are reacting.

Now, why would you and your wife care about occassional intestinal damage? One study suggested that undiagnosed celiacs have a 2x chance of dying from all causes, but that celiacs who are intermittent consumers of gluten have a 6x chance of dying from all causes. The same blood tests used to diagnose your wife can be used to monitor her compliance with the diet. 6 month then annual checks are sometimes recommended. The numbers should drop over time and eventually fall into the normal range if she is able to get all the gluten out of her diet. Cross contamination happens to all of us, especially in the beginning. It's a lifestyle change once you are diagnosed, but with time and education, most of us are very happy with our gluten free foods and healthier bodies.

[JustForJen]

Thank you for all the responses. Im starting to become very skeptical of Celiac's Disease and whether or not she has been misdiagnosed. Her Symptoms are basically IBS and from reading about many people symptoms she is either in the early stages or she is very lucky not to have many of the other symptoms. I think its time to get a second opinion and perhaps go for a biopsy instead of just trusting the blood test.

[Jenn624]

Thank you for all the responses. Im starting to become very skeptical of Celiac's Disease and whether or not she has been misdiagnosed. Her Symptoms are basically IBS and from reading about many people symptoms she is either in the early stages or she is very lucky not to have many of the other symptoms. I think its time to get a second opinion and perhaps go for a biopsy instead of just trusting the blood test.

My symptoms are basically IBS as well, and I feel 100% better on gluten-free. It can't ever hurt to try the gluten-free. It's not that hard of a lifestyle change. When I have gluten, I live in the bathroom for 3 days. It's been fabulous not to have to worry about that. As with anything new, you need to learn about it, be diligent, and try it. It seems like you are trying to find loopholes to get out of making a change, when the change might be the best thing that has ever happened to your wife. I know it has been for me!

Jenn

[txplowgirl]

IBS is a diagnoses when the dr's can't figure out where the problems are coming from. Lots of people have been dx'd with IBS when come to find out its a gluten intolerance. Not only that but the blood tests are notorius for giving false negatives. Also, the biopsies can be negative too if the dr dosen't biopsy the right places.

[etta694]

For quite a few of us just a little bit of gluten after being gluten free causes an even more severe reaction than what we were experiencing when we were diagnosed.

I just want to underline this point. The longer I am gluten free the more I can't tolerate gluten 'cheating'. Also - I was the 'IBS' diagnosis and negative biopsy. When I went gluten free... UREKA! I felt SO much better.

You may want your wife to live as a gluten eater but if that is the issue... it will be doing something behind the scenes.

[splash]

Just to add a little reminder to what I'm sure sounds like a fairly unhappy conversation: this diagnosis is GOOD news. Your wife has probably been experiencing confusing and frustrating, and possibly embarrassing symptoms for some time now. Many people go to the doctor and find out that they have permanent illnesses, or that they are doomed to taking medication and having blood taken for the rest of their lives. The diagnosis of celiac disease was, for me, the best news I'd ever heard in my life - and that's still true years later despite all the trouble the diet causes. There's no drug necessary, there are no side effects, and your wife's health is absolutely going to improve. Next time the two of you struggle to explain to your coworker's spouse that, "thank you for the dinner invitation, but please be careful..." just remember that the alternative could be much, much worse. This diet is the best thing that could have happened to her.

[ravenwoodglass]

Thank you for all the responses. Im starting to become very skeptical of Celiac's Disease and whether or not she has been misdiagnosed. Her Symptoms are basically IBS and from reading about many people symptoms she is either in the early stages or she is very lucky not to have many of the other symptoms. I think its time to get a second opinion and perhaps go for a biopsy instead of just trusting the blood test.

I was also told I had IBS for years before the other symptoms set in. When the blood test is positive it is positive. You are lucky and it was caught before it has the chance to destroy her brain, liver, gallbladder, thyroid or another organ, give her osteoporosis, cause a premature menopause or multiple miscarriges, severe anemia or even cancer. I do hope you are not going to dismiss the diagnosis just because she isn't half dead....yet.

[Judy3]

I was also told I had IBS for years before the other symptoms set in. When the blood test is positive it is positive. You are lucky and it was caught before it has the chance to destroy her brain, liver, gallbladder, thyroid or another organ, give her osteoporosis, cause a premature menopause or multiple miscarriges, severe anemia or even cancer. I do hope you are not going to dismiss the diagnosis just because she isn't half dead....yet.

Same here Ravenwoodglass. Sounds to me like Mr JustforJen is in denial and doesn't want to give up his gluten so he's hoping she doesn't have it or can cheat. shaking head. oh the games we play in our minds. A positive blood test is a positive blood test... be happy they found it and she didn't have to be sick for her whole life. Merely my opinion and not intended to strike a nerve but if it does so be it.

[ryebaby0]

Same here Ravenwoodglass. Sounds to me like Mr JustforJen is in denial and doesn't want to give up his gluten so he's hoping she doesn't have it or can cheat. shaking head. oh the games we play in our minds.

(Well, that's not a very nice welcome-to-the-board..I think most people here have gone through relief/horror/denial/grief/coping/happiness cycles in their health journey. Everyone likes to be sure before they embark)

My son gradually became desperately ill and diagnosed as a result -- probably had been celiac for 6-7 years. Looking back, we realize the signs we missed, or attributed to other things. My husband was tested as a result of my son's hospitalization; he had no serious symptoms BUT both his grandparents died of colon cancer. He feels much, much, stronger, healthier, and well on a gluten free diet. The point being that there are no "typical" celiac symptoms, as with other autoimmune diseases there's just this pile of "possible" symptoms and your mileage may vary.

Don't panic, JustForJen. You can do this -- both of you. I am also the not-celiac spouse and I know the search for certainty can be consuming.