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What If A Gluten Free Diet Is Not Strictly Followed?

Jen39

By Jen39
in Coping with Celiac Disease

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Jen39 Newbie
Jen39
Posted

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic. His dx came as an accident and he really had no dibilitating symptoms at all. He was being checked because he had bloody diarrhea. Well the cause of that ended up being something else, but during the testing phase he did test positive for Celiacs. So my question is, if he continues to eat Gluten should he expect to see symptoms someday soon? Do some people w/ celiacs continue to eat Gluten and never expierence symptoms? Thanks for any advice.

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ravenwoodglass Mentor
ravenwoodglass
Posted

He risks a great deal by not following the diet. Celiac is autoimmune, that means the body is attacking itself and that is not a good thing. He could develop other autoimmune issues that might impact any organ including the brain. His chances of developing certain cancers will be raised (that goes down to the same as non celiacs after 5 years gluten-free).

The diet does seem hard at first but it isn't as bad as you might think. Following it is well worth the hassle.

If you have children they should also be tested as should your husbands first degree relatives, Mom and Dad and siblings.

love2travel Mentor
love2travel
Posted

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic. His dx came as an accident and he really had no dibilitating symptoms at all. He was being checked because he had bloody diarrhea. Well the cause of that ended up being something else, but during the testing phase he did test positive for Celiacs. So my question is, if he continues to eat Gluten should he expect to see symptoms someday soon? Do some people w/ celiacs continue to eat Gluten and never expierence symptoms? Thanks for any advice.

That is exactly what happened to me - no obvious symptoms whatsoever. No GI troubles. I found out I have celiac disease as my sister was diagnosed with gluten intolerance and man, was I SHOCKED! Imagine that PLUS having an intense passion for food!! I know regulars must be so sick of hearing this yet again but I teach culinary classes and have traveled the world literally for great food and ingredients. So, I can totally relate to him but he absolutely MUST go 100% gluten free for the rest of his life, just like we do. There are no other options but strict adherence, unfortunately. We have no idea how long he has had celiac disease we also have no idea whether he would eventually get sick or not. I must have had it for ages because my villi showed severe damage. Believe me - I was absolutely devastated with my diagnosis but six months later it is just a natural part of life. :) Sure, I think about what would happen if I had one piece of ciabatta bread (and am very curious) but would never, ever actually do it because I know of the damage it would cause inside that leads to future issues such as cancers and so on. And if I had that one piece and did not get sick then what if I had another and another and another? When I went on my gluten challenge after being off gluten for four months I did not get sick even once. That was TOUGH going back off gluten.

Cliche but true - it does really get better with time. Seriously. This is coming from someone who thought she was dealt a prison sentence!

mamaw Community Regular
mamaw
Posted

I totally agree with Ravenwoodglass.......nothing is worth the risk... its like playing Russian Roulette with your own body....

Marilyn R Community Regular
Marilyn R
Posted

Yrp. Cheating is flirting with disaster.

Jen39 Newbie
Jen39
Posted
  • Author

Well, it's just not going to happen i'm afraid. I guess we will just have to wait out the risk and pray for the best. My husband is an avid beer lover. He works in the industry and even has a very expensive home brewery that took years for him to perfect. Plus he is pure italian and pasta is a must and a staple in his family. We loaded up on some Gluten free beers, pastas and breads in hope's they would be tolerable. But they were quite bad to be perfectly honest. I wanted so bad to persuad him they we eatable, I couldn't pull off the lie. They were awful to be blunt. The Beer was flat and watery and without flavor. Funny thing is, he would have never had any clue he had celiacs if he hadn't went for an unrelated problem. It's a life ruiner. very sad.

kareng Grand Master
kareng
Posted

Well, it's just not going to happen i'm afraid. I guess we will just have to wait out the risk and pray for the best. My husband is an avid beer lover. He works in the industry and even has a very expensive home brewery that took years for him to perfect. Plus he is pure italian and pasta is a must and a staple in his family. We loaded up on some Gluten free beers, pastas and breads in hope's they would be tolerable. But they were quite bad to be perfectly honest. I wanted so bad to persuad him they we eatable, I couldn't pull off the lie. They were awful to be blunt. The Beer was flat and watery and without flavor. Funny thing is, he would have never had any clue he had celiacs if he hadn't went for an unrelated problem. It's a life ruiner. very sad.

Jen, I know you aren't going to like me very well but you need to understand some things for your health & happiness ( and kids, too) . To be really blunt......

I hope he has good life insurance already. He likely won't be able to get any without the follow-up tests showing he is following a gluten-free diet. He will likely get some other illness because of the antibodies running amuck and attacking other parts of his body. He will have bone loss, anemias, etc due to the malabsorption of nutrients. You didn't say how old you are or if you have kids but you should be planning for your and the kids financial future.

Or....he could try to make better gluten-free beers and pastas. He could decide his health is a gift for you and the kids ( if there are some). He could set a good example for the other members of his family that may have this illness ( it is genetic). I understand that in Italy, they test all the school children for Celiac. Actual Italians, in Italy, deal with the illness.

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love2travel Mentor
love2travel
Posted

To be really blunt......

I hope he has good life insurance already. He likely won't be able to get any without the follow-up tests showing he is following a gluten-free diet. He will likely get some other illness because of the antibodies running amuck and attacking other parts of his body. He will have bone loss, anemias, etc due to the malabsorption of nutrients. You didn't say how old you are or if you have kids but you should be planning for your and the kids financial future.

Or....he could try to make better gluten-free beers and pastas. He could decide his health is a gift for you and the kids ( if there are some). He could set a good example for the other members of his family that may have this illness ( it is genetic). I understand that in Italy, they test all the school children for Celiac. Actual Italians, in Italy, deal with the illness.

Agreed. There are several of us here who adore food and cooking (you don't need to be Italian to love/miss pasta) who are trying our very best to make gluten-free things as great as we possibly can. I still make homemade pasta and breads but make them gluten-free. It CAN be done because it must.

People have DIED from related illnesses resulting from celiac. If I were to continue eating gluten each crumb would cause such guilt that I could not bear it. I am doing this partly for my family, too, as they need me.

Jen, I get the fact that your husband has a brewery and it is a huge part of him. He is likely in denial (as I was). Sounds harsh but health is more important than beer and food. This is his LIFE we are talking about. Believe me, I have had to make major changes to the culinary classes I teach. And it's not just me - everyone must make huge changes and better choices. Of course it is his decision but he absolutely must consider his precious family. :) Who knows - there may be huge benefits for him off gluten that he does not even realize at this point.

It is true that there are all sorts of icky gluten-free products out there so many of us scratch cook everything instead which is almost always FAR better. I have yet to find a commercial pasta I like. I get the Italian thing - I've been to Italy probably 20 times and understand the culture first hand. In Italy being gluten-free is incredibly easy (lucky Italians!).

Jen39 Newbie
Jen39
Posted
  • Author

He is the lone Celiac in the family. We have no kids, but his parents and his many brothers and sisters along with dozens of aunts, uncles, and cousins and so forth all live in Italy where testing is basically mandatory. All are negative except for him. He did suffer from severe Psoriasis and Psoriatic Arthritis at one point in his life, but both went into spontaneous remission many, many years ago. I will try to convince him, I will. It would be so much more helpful if these Gluten free foods tasted better. But ick, they were really really bad. Especially the bread. I ordered a case of some gluten free beer and i'm hoping it will taste better then the redbridge we tried the other night. Or local pizzaria once had a gluten free pizza that was supposidly fairly good but wouldn't you know they discontinued it due to lack of sales about one week before his diagnosis lol. Cruel fate indeed.

Jen39 Newbie
Jen39
Posted
  • Author

Oh, and no problems w/ health insurance. We have plenty of that.

GFinDC Veteran
GFinDC
Posted

I've read quite a few stories like your husbands' on this board. People go to the doctor for some complaint and end up getting diagnosed with celiac disease. Celiac has a really wide range of symptoms and can be confusing to diagnose because of that. Also people with celiac disease have a higher than average chance of contracting other auto-immune diseases. If you search on celiac associated condition or celiac related condition you can find lists of them. You can read through some of threads on this forum and check the signature lines. Some of the people went many years not knowing they had celiac and developed multiple problems because of the damage. People with no noticeable GI symptoms are said to have silent celiac, which does not mean they don't have damage to other parts of their bodies. Has your husband tried Green's beer from Belgium? he might like that, it is gluten-free. Anhueser Busch makes Redbridge gluten-free beer, and there are several others.

kendon0015 Rookie
kendon0015
Posted

Prepare some great risottos and polenta Italian dishes for him...there is a whole world of food to discover. Follow up with a wonderful flourless chocolate cake for dessert. I go to Little Italy to eat in NYC, no problem with choices. When I was pre-gluten-free, I brewed my own beer. Do the research for him to see if he could home brew gluten free varieties and present him with a gift basket with the ingredients to do so.

His life, and your family's, depend on it. It's the responsible thing to do.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic. His dx came as an accident and he really had no dibilitating symptoms at all. He was being checked because he had bloody diarrhea. Well the cause of that ended up being something else, but during the testing phase he did test positive for Celiacs. So my question is, if he continues to eat Gluten should he expect to see symptoms someday soon? Do some people w/ celiacs continue to eat Gluten and never expierence symptoms? Thanks for any advice.

Hello Jen,

There are so many possible health conditions that can develop from not following a strict gluten-free diet. From other auto-immune diseases to cancer, his risk of poor health int he future is great if he doesn't stay gluten-free. Your husband may have none of the symptoms currently OR he may have some that you don't even realize are symptoms. For an idea of what you may be dealing with in the future (or to see if he has any symptoms you didn't know were even related), here is a comprehensive list of associated diseases and symptoms: Open Original Shared Link

If you look at that list it becomes apparent (at least to me) that celiac disease is much more complicated and far reaching than most people realize. It's not just about a little stomachache and potty issues. It can affect every organ in your body and cause other deadly conditions if left unchecked. I know you said it is hopeless to get your husband to stay gluten-free, but at the very least please have him read this list and think long and hard about the consequences of not going gluten-free. And whatever his decision is be as supportive as possible. We can't make anyone change if they refuse (I know this from my own experience with relatives that need to be gluten-free but refuse to try it) but we can try to educate and walk along side of people that struggle to make the change. It's not easy but it doesn't have to be that hard either! This board is a great resource for support and HELP making those changes if he changes his mind and wants to try to go all the way.

love2travel Mentor
love2travel
Posted

He is the lone Celiac in the family. We have no kids, but his parents and his many brothers and sisters along with dozens of aunts, uncles, and cousins and so forth all live in Italy where testing is basically mandatory. All are negative except for him. He did suffer from severe Psoriasis and Psoriatic Arthritis at one point in his life, but both went into spontaneous remission many, many years ago. I will try to convince him, I will. It would be so much more helpful if these Gluten free foods tasted better. But ick, they were really really bad. Especially the bread. I ordered a case of some gluten free beer and i'm hoping it will taste better then the redbridge we tried the other night. Or local pizzaria once had a gluten free pizza that was supposidly fairly good but wouldn't you know they discontinued it due to lack of sales about one week before his diagnosis lol. Cruel fate indeed.

We totally are with you on the bread, etc. The worst I've had was a tiny yellowish square of drywall-tasting garbage. I actually cried that day. Have you heard of Udi's or Rudi's? I have not seen Rudi's but people seem to quite like it. Homemade is better, though. That really is cruel about the pizza place. :angry: But several of us on here make pretty darned good pizza crust. It is true that it is not the same, I know, but it can be decent. Seriously. And I'm used to wood-oven fired pizza in Italy. Admittedly I miss that a great deal. But we are all here for you for support, help, info, whatever! We've been through it. Trust us! :D And I'm sure we can all learn from you, too. :)

melikamaui Explorer
melikamaui
Posted

I'm with all the others. He really does have to stay gluten-free. And since he has relatives in Italy, maybe they could send him some of the AMAZING gluten-free food they have there? We just got back from a trip to Italy and it was gluten-free heaven. Every place we ate was better than the next! It was awesome. What was depressing was coming back to the states and the icky gluten-free food we have here. If he has Italian connections use them! :D

love2travel Mentor
love2travel
Posted

If he has Italian connections use them! :D

:lol::lol::lol:

Totally. Except maybe do not try the awful Schar's bread. Some of their products are very good but their bread? Absolutely insipid, dry, crumbly sawdust (at least the two kinds I have tried). Have you tried any Bi-Aglut products?

Jen39 Newbie
Jen39
Posted
  • Author

So Gluten free pastas and bread in Italy are actually better then what we have in the states huh?? That is encouraging news. Can it be ordered online? His entire family lives in Syracuse and would be happy to ship us some goods. Oh my, this could be very encouraging news. Thank you all so much.

come dance with me Enthusiast
come dance with me
Posted

I know it's more extreme but I think of it a little like a smoker who has cancer but won't stop. You know he has 2 options. He can live a gluten free lifestyle with many more happy years ahead of him or he can fail to take it seriously and risk cutting his life short.

Greg Rappaport Rookie
Greg Rappaport
Posted

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic. His dx came as an accident and he really had no dibilitating symptoms at all. He was being checked because he had bloody diarrhea. Well the cause of that ended up being something else, but during the testing phase he did test positive for Celiacs. So my question is, if he continues to eat Gluten should he expect to see symptoms someday soon? Do some people w/ celiacs continue to eat Gluten and never expierence symptoms? Thanks for any advice.

I'm no expert (gastroenterologist), but I was told: "Once a celiac, always a celiac". Perhaps your husbands were exacerbated by multiple conditions - inclusive of celiac disease. The great thing about celiac disease is that it is TOTALLY managed by diet. No medication is necessary. As some of the others have posted, it is highly likely that your husband will benefit long-term from a gluten-free diet.

Has your husband had an endoscopy (with biopsies) to confirm the blood diagnosis? This procedure can easily demonstrate what (if any) atrophy the stomach has suffered as a result of ongoing gluten ingestion. The lining of the stomach is depleated over time, resulting in malabsorption.

I have been gluten-free now for 15 years, but it did not stop me from developing osteopenia. And I'm a 41 year-old, otherwise healthy male! It's serious stuff!

Best of luck.

Jen39 Newbie
Jen39
Posted
  • Author

I don't know if all the doom and gloom stuff will work with him. He's the kind that would much rather live a shorter happier life, then a miserable long life. Honestly, I can't really say as if I would blame him or not. His doc told him the risk of Lymphoma was very very small even if he continued to eat gluten. And most of the stuff i'm finding online concurs. Keeping him "happy' and gluten free is my goal. He does not scare easily. I found a few articles that say the jury is out on whether or not "silent" celiacs even have to adhere to a strict gluten free diet. if he reads that I can forget about it lol. I'm gonna start slow and work my may up. I have an order of Gluten free beer on the way that supposed to better the the Redbridge he already tried and hated. baby steps I guess..

Jen39 Newbie
Jen39
Posted
  • Author

Oh, and i'd love to surprise him with some wonderful gluten free food from his home, but I do not speak the language. He has a brother that speaks English, but will only do so IF he is in an English speaking country. Yeah I know, he's an ass. I don't think he will be of much help but I may try. I had to call him once for an emergency. He would listen to me in English but would only reply in his tounge. The whole coversation was absurd. I swore i'd never speak to him again.

love2travel Mentor
love2travel
Posted

So Gluten free pastas and bread in Italy are actually better then what we have in the states huh?? That is encouraging news. Can it be ordered online? His entire family lives in Syracuse and would be happy to ship us some goods. Oh my, this could be very encouraging news. Thank you all so much.

Apparently US has far better variety than we do in Canada (i.e. our Lea and Perrins Worcestershire contains gluten, we do not have King Arthur products, no Trader Joe's or Whole Foods at least not within a good thousand miles of our place...) and Italy is amongst the best on the planet for gluten-free products. I've spent time in Syracuse - a lovely ancient place. I would definitely look into shipping. At least there are options available - keep hopeful! :)

color-me-confused Explorer
color-me-confused
Posted

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic.

Of course it is realistic. It will take self-education, effort, lots of mistakes, and lots of energy but you and he can do it. Oh, and prepare to spend more $ on food :angry:

lynnelise Apprentice
lynnelise
Posted

I loathe beer so I can't answer to whether or not any gluten-free variety is good. I know that my not gluten-free husband loves Rudi's and Udi's breads. I do usually toast them because it improves the texture. I usually use Ancient Harvest corn/quinoa pasta. Gluten eating friends coming for dinner usually have 2nds or 3rds. Sometimes ask to take some home. That leads me to believe they can't tell the difference. I seriously believe Betty Crocker gluten-free brownies taste WAY better than the original and my family who all eat gluten agree. It takes trial and error of brands but it's possible to find tasty gluten-free food. Plus don't forget the many things that are naturally free of gluten!

Forgot to add Udi's makes amazing pizza crusts. I have pizza night once a week and it's the whole family's favorite!

violentlyserene Rookie
violentlyserene
Posted

Hello everyone. My husband was recently dx w/ Celiacs and to be honest, a gluten free diet is probably not realistic. His dx came as an accident and he really had no dibilitating symptoms at all. He was being checked because he had bloody diarrhea. Well the cause of that ended up being something else, but during the testing phase he did test positive for Celiacs. So my question is, if he continues to eat Gluten should he expect to see symptoms someday soon? Do some people w/ celiacs continue to eat Gluten and never expierence symptoms? Thanks for any advice.

As I understand it from the reading I've done, each person has a threshold of damage but that threshold may not always be where the symptoms starts. Every molecule of gluten pushes the person closer and closer to the threshold so it's in your husband's best interest to avoid as much as he reasonably can to keep inflammation and thus damage to a minimum.

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