Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What If A Gluten Free Diet Is Not Strictly Followed?


Jen39

Recommended Posts

tarnalberry Community Regular

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.

He increases his risk of intestinal cancer, lymphoma (blood cancer), other autoimmune diseases (such as rheumatoid arthritis and hashimoto's), increased risk of osteoporosis (yes, in men too), and - on average - will reduce his life span by 10 years, and quality of life (particularly later in life) significantly, and in ways that may not be able to be corrected by going on a gluten free diet later.

If he thinks that beer and pasta are worth a decade of his life, that is his choice to make (well, it affects you too, of course, but still his choice). But you certainly haven't tried all the gluten-free pasta in the world (there are many kinds that people find quite acceptable), and he hasn't given himself any time to try to adapt his diet and his tastebuds.

Italian food is not all pasta - there are parts of Italy where celiac is actually quite common and the diets revolve far more around rice (risottos) and seafood, besides the heavy doses of vegetables, of course. While I find Udi's a good sandwich breach, it's true that I haven't found a good whole-load bread. But you know what - you can actually live a quite happy life without bread! And while I don't drink beer (and can live a quite happy life without it), perhaps he needs to start learning how to brew gluten free beer, since he's got the equipment to do it.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gemini Experienced

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..

I can't say that I totally disagree with your husband's philosophy on life although I follow a strict gluten-free lifestyle myself and have never considered myself deprived or that the diet was difficult. Different people have different severity of symptoms and quality of life is relative. I will say that I have a boatload of family members who do not want to hear that they have Celiac (it's on BOTH sides of my family) and many of them are older yet they have never developed lymphoma or any of the other extreme problems associated with Celiac. I think everyone has to accept that risk means different things to different people and you cannot make someone go gluten-free if they do not want to. Lymphoma is still pretty rare but there are many scaremongers out there. All of my family members who I suspect have/had the problem all lived to be quite old and were in better shape than many I know without Celiac. It really is a crap shoot when it comes to who gets what. I follow the diet to have good health now, while I am still relatively young. I do not follow the diet so I can live to be 100 because, quite frankly, that's over rated!

However, if you want to introduce your husband to great gluten-free pasta, try the Bi-Aglut or my personal favorite, Le Veneziane. Here's a link where you can purchase them on-line: Open Original Shared Link I am being brutally honest when I say that it is hard to tell the difference between these 2 brands and wheat pasta...really! I won't eat anything else. It even has the same mouth feel as wheat pasta. If your hubby doesn't like these, then all is lost! ;)

There are many other great gluten-free products out there so he may come around. I cannot help you with the beer as I do not drink the stuff. I am a red wine drinker and thankfully, there is no gluten in wine, unless you put it there yourself. I wish you luck. Maybe you could sneak some gluten-free stuff into the evening meal, without telling him and see what happens? He may not notice the difference with some products, they are that good.

My recommendation for bread would be the Canyon brand, out of Colorado in the US or the Glutino Genius bread. Genius bread is a brand in the UK and they have licensed out to Glutino to supply their bread to North America and Canada. I have had the Genius bread in England and it was very good but haven't tried the one made by Glutino. It's supposed to be the same recipe.

Hope this helps!

tarnalberry Community Regular

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.

And that's totally his choice, regardless of what anyone else thinks about it. He's not guaranteed that it would be happier, of course, but no one (celiac or not) is. That said, the risk of nutritional deficiencies is not a rarity, particularly if they have confirmed intestinal villi damage.

Totally MOO (my own opinion) - he should give it a real chance (six months, at least), and TRY to find other foods. Pasta is not the only way to have a happy life! :) If he finds that he cannot adjust, then he can switch back, but he'll have given it a chance. Personally, I found a lot more foods to enjoy once I stopped looking at the standard stuff I'd always had.

sreese68 Enthusiast

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.

The problem is he may end up with a long and miserable life. I wish I had known that my neurological problems wouldn't have gotten this bad if I had been diagnosed a decade ago. I didn't have GI symptoms until a couple of years ago, and those actually come from fructose malabsorption. (People with celiac often develop secondary food intolerances.) I had "silent" celiac for a long time looking back at symptoms I've dealt with for years. My nerves are damaged enough that I have a body part tingling every day. Sometimes all day. Sometimes enough to keep me from falling asleep. My muscles are losing mass due to nerve issues. It's no fun to have a doctor tell you that you HAVE to exercise, never go barefoot, and wear comfortable shoes. (note that I'm only 42 and on the thin side and looking into buying orthotics!!) I've had problems with pain most days for 2+ years now. I don't know if my nerves will ever heal - I have may been diagnosed too late.

I developed enough food intolerances that I'm down to 15 foods I can safely eat now. I keep trying to expand my diet, but I keep reacting to foods. I doubt I'd be this bad off with leaky gut if I had gotten off gluten a long time ago.

I had problems with fatigue and lack of motivation for years. Gone gluten free. My anxiety levels and irritability which were going on the rise the last few years - gone. Memory and processing problems - gone. These things only come back when I accidentally get gluten or an offending food in my system. Did you know that a celiac eating gluten can get dementia? My mother was diagnosed with early-onset Alzheimer's at 47. No one else in her family has had early onset Alzheimer's, and it's strongly genetic. Makes me wonder if she was a silent celiac, and my neurologist thinks it's entirely possible. The last 15 years of her life were not happy.

So he can wait to go gluten free until he has symptoms like another autoimmune disease or nerve problems or diabetes, but then he has to deal with the consequences of THOSE issues which will impact his daily life. Just because his celiac is silent doesn't mean it's not doing damage that may lead to much more misery than a diet change. (I don't say "diet change" lightly. I know it's hard and sucks. I react to my 3 favorite foods, and I have MAJOR food fatigue eating the same things all the time, but I feel more alive than I have in years.)

ravenwoodglass Mentor

You can also help hubby along by 'secretly' feeding him gluten free dinners for a few weeks and then ask him how he has liked your cooking lately. There is a whole world of naturally gluten free food. If your imagination needs some nudging check out the recipe section. Many people think the diet is a 'fate worse than death' (a quote from one of the doctors who tested me over the years) as we have gotten so used to quick and easy gluten filled meals. However there are lots of quick and easy gluten free meals to be had also. I do them all the time. Baked chicken or a steak and potatoes or rice and veggies, stews and soups (a potato cut up real small and overcooked into the stew will thicken without flour), roasts, fish, egg dishes etc...

If hubby like linguine or angel hair pasta Thai Kitchen rice noodles are really good and really quick. I do them often with a handful of shrimp, some garlic and butter and veggies tossed in.

The suggestion for Udi's bread is one I second and if you can find Gluten Free Pantrys French Bread mix it makes a great pizza crust that even gluten eaters will love (just don't tell him it's gluten free till after he tells you how good your homemade pizza is).

It may be a bit sneaky to give him naturally gluten free dinners without telling him but it may make getting him to see that the diet is doable easier and you won't be contributing to his health issues.

psawyer Proficient
Gluten Free Pantrys French Bread mix ... makes a great pizza crust that even gluten eaters will love (just don't tell him it's gluten free till after he tells you how good your homemade pizza is).

What Raven said is true. We use that mix and love it. It is much better than any store-bought already-made crust we have found. We find the Kinnikinnick ones good in a pinch when we don't have time to bake our own.

domesticactivist Collaborator

It's going to be an adjustment but once the commitment is made it gets easier. You have great advice already but I want to add that I think it is much easier not to try gluten-free replacements at the beginning. Even if they are good they will not be the same! Sticking to whole foods for a while is not only good for you, but it also helps reset your palate so you aren't always comparing the new thing to old favorites.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.