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What If A Gluten Free Diet Is Not Strictly Followed?


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#1 Jen39

 
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Posted 16 August 2011 - 03:18 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.
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#2 ravenwoodglass

 
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Posted 16 August 2011 - 03:44 PM

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.
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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)

#3 love2travel

 
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Posted 16 August 2011 - 03:46 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.


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!
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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.

#4 mamaw

 
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Posted 16 August 2011 - 03:47 PM

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

 
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Posted 16 August 2011 - 03:57 PM

Yrp. Cheating is flirting with disaster.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#6 Jen39

 
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Posted 16 August 2011 - 04:18 PM

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.
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#7 kareng

 
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Posted 16 August 2011 - 04:30 PM

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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#8 love2travel

 
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Posted 16 August 2011 - 04:39 PM

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!).
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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.

#9 Jen39

 
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Posted 16 August 2011 - 04:51 PM

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.
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#10 Jen39

 
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Posted 16 August 2011 - 04:52 PM

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

 
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Posted 16 August 2011 - 05:07 PM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 kendon0015

 
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Posted 16 August 2011 - 05:23 PM

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.
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#13 GlutenFreeManna

 
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Posted 16 August 2011 - 05:35 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.


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: http://glutenfreewor.../symptom-guide/

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.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#14 love2travel

 
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Posted 16 August 2011 - 06:14 PM

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. :)
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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.

#15 melikamaui

 
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Posted 16 August 2011 - 06:23 PM

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
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