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What If A Gluten Free Diet Is Not Strictly Followed?


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31 replies to this topic

#16 love2travel

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Posted 16 August 2011 - 06:27 PM

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?
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

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#17 Jen39

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Posted 16 August 2011 - 07:04 PM

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.
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#18 come dance with me

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Posted 16 August 2011 - 07:17 PM

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.
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#19 Greg Rappaport

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Posted 16 August 2011 - 07:28 PM

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.
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#20 Jen39

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Posted 16 August 2011 - 08:41 PM

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..
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#21 Jen39

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Posted 16 August 2011 - 08:49 PM

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.
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#22 love2travel

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Posted 17 August 2011 - 07:50 AM

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! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#23 color_me_confused

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Posted 17 August 2011 - 08:05 AM

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:
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#24 lynnelise

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Posted 17 August 2011 - 10:04 AM

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!
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#25 violentlyserene

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Posted 17 August 2011 - 10:24 AM

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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#26 tarnalberry

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Posted 17 August 2011 - 10:42 AM

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.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#27 Gemini

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Posted 17 August 2011 - 11:21 AM

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: Gluten-free Pasta 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!
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#28 tarnalberry

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Posted 17 August 2011 - 12:32 PM

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.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#29 sreese68

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Posted 17 August 2011 - 01:20 PM

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.)
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Sharon
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Failed gluten challenge May 2011
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#30 ravenwoodglass

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Posted 17 August 2011 - 02:40 PM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)


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