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Jojo0202

The good, the bad & the ugly

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My husband was recently diagnosed with celiac.  I think it has been harder on me than him so far, or perhaps he is in the denial stage.  We knew his test results a few weeks ago and I immediately went gluten free after some "surface research" to support him.  I have remained gluten free and I am waiting still for him to jump on the wagon. It is great that there are so many positive discussions about living healthy with eliminating gluten, however, I feel that he is not taking it seriously.  He believes that because he feels fine he is "better than the disease" and it will not effect him like others.  Being that it is silent celiac is not helping him make the change either. 

However, he currently has NAFLD, a thyroid issue, inflammation of the intestines with no villi - completely smooth intestinal walls, and I worry about his heart being that he has the fatty liver and heart issues already run in his family! He was also recently in the hospital hours away from a rupture with an intestinal blockage (which he does not relate to celiac, but I have a feeling it played a part in it).  The blockage was what lead to the testing.

When he spoke to the dr.'s about his test results they were very positive and helpful to him making sure he knew that he can recover damage done.  However, I feel that he came home thinking it was ok to cheat once a week or once a month at the least.  I really wish I was at the dr apt because I know my husband and I think the scared straight approach would have been much more effective than the everything will be unicorns and rainbows talk he was given.  

I have been doing some research trying to find negative comments about people who did not follow the diet and how their health may have declined.  Perhaps people who regret not making the lifestye choice of gluten free sooner, but I am not finding anything to show him that long-term effects DO happen if you don't take action now. Does anyone have anything I can share with him? Real life stories not what "may" happen.

I will also be going to the dr.'s with him next time to ask my own questions.  I am the one who prepares our meals and it is effecting the whole family.  I have zero issue with going gluten free.  We eat home a lot and I am a person who looks for what I can have vs. what I can't have. I Have been making gluten free meals for the past few weeks and he doesn't even know it lol, however when he goes to work I can not control what choices he makes.

We have three children and with him having health issues he can't feel already I am terrified things will continue to decline. Perhaps I need more support than he does at this point. We vacationed at his parents house for the holiday weekend and I told his mom about what was going on.  She was devastated and felt sorry for him (I hate when people feel sorry for people!) she then immediately made him some cheese bread and ordered a pizza. I am aware that this will be an on going battle, but I need him to get on board with saying no.  I realize that every day he will be faced with situations like this!  

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The thing is - he does have health issues caused by Celiac but he refuses to see any of his health issues - that's how it sounds to me.  He has a thryoid issue, fatty liver and intestinal issues that he isn't treating.  He probably can't get new life insurance with untreated Celiac.  Maybe you could ask him to get some more?  Maybe being denied would be part of a wake up call.

I would see if I could get him into some sort of counseling.  Maybe marriage counseling?  

What the doctor said about a small amount occasionally won't hurt - that is after healing and you get some accidentally.

I think you should go with him to the doctor and get some straight talk.  Maybe even call and talk to t he doctor ahead of time.  Explain your concerns and that he needs to be blunt and forceful when talking with your husband.  

 

 

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I assume you will get the kids tested on their next doctor's visit?  

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Um we have had members get blockages that end up resulting in it rupturing and having to have a colostomy and a bag attached. We have lost a few members over the years to cancers of the intestines and lymphoma. I had Ulcerative Colitis come from mine being left untreated for years.....and my UC keeps me from eating carbs, sugars, dairy, soy or gluten or it flares up, distends my gut and causes bleeding and bloody stool. Random allergies, and food issues come with this disease also....the longer your eating gluten the more random things you have to remove from your diet. I am pretty sure some other members can link you to the past post by members and even members we have lost if he needs that kind of kick.

This disease is genetic, any first degree realatives (yes your kids) need to be tested every few years for the disease, and need to be eating gluten for these test (might go ahead and get your kids tested now before going house gluten free)

Diabetes also goes hand in hand with this disease.

Here you can read up on the newbie 101 sections....there is a HUGE learning curve for this disease, and one thing your husband should know is a crumb is all it takes to flare up antibodies for at least a few weeks of ongoing damage....some have months. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

While we do suggest a whole foods only diet starting off, here is a list of some processed alternatives and ingredients [maybe some instant lunch items to wean in on (or you can back him lunches and snacks you know something he can brag about)]
https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/

 

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Yes my kids are being scheduled for testing already.  They are much easier to help!

The dr.'s told him his illnesses "could be" or are "likely" to be from celiac but they can't know for certain. I know that dr.'s don't want to provide bad news and leave a patient feeling hopeless, however I feel that they gave him a false sense of reality with the way it was presented.  I do plan to go with him next time and I do not have a problem telling it like it is to the dr's in front of him.  Maybe because I research it more I have more knowledge to be able to ask more personal questions linked directly to him and his health.

As far as counseling goes I think it might be a good idea for support for both him and I.  I can't help but take the comments about wanting to live a short "happy gluten filled life" being better than not eating something and living longer personally. We just don't see eye to eye on this at all. Again, maybe it is denial. but I want to show him these cases of younger people and ask if that is what he wants for both of us to go thru.   

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22 minutes ago, Jojo0202 said:

live a short "happy gluten filled life"

Yeah that might sound good and all...but you will develop very bad issues with other foods before it kills you and it will be miserable......I got issues with sugars causing pain and distention, allergies to bloody corn and whey....yeah imagine that limitation, Oh the fun one...gluten ataxia...rare but I got that joker card. Nerve damage, brain damage (took away my old hobbies), and borked my pancreas with nerve damage SO I can not eat meats without enzymes....meats make me vomit or come out undigested.....let that set in.......
Before this disease kills you with mal nourishment, or leads to deadly things like cancer...it will probably cause your body to respond drastically to other food staples. Many of us can attest to food sensitivities, intolerance, and allergies cropping up with the disease. It will ruin your diet with more then just gluten if you leave it alone.

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6 minutes ago, Ennis_TX said:

Yeah that might sound good and all...but you will develop very bad issues with other foods before it kills you and it will be miserable......I got issues with sugars causing pain and distention, allergies to bloody corn and whey....yeah imagine that limitation, Oh the fun one...gluten ataxia...rare but I got that joker card. Nerve damage, brain damage (took away my old hobbies), and borked my pancreas with nerve damage SO I can not eat meats without enzymes....meats make me vomit or come out undigested.....let that set in.......
Before this disease kills you with mal nourishment, or leads to deadly things like cancer...it will probably cause your body to respond drastically to other food staples. Many of us can attest to food sensitivities, intolerance, and allergies cropping up with the disease. It will ruin your diet with more then just gluten if you leave it alone.

I am sorry to hear that, but thank you for your honest reply.  I think this is the kind of stuff that he needs to hear. I am hoping by becoming actively knowledgeable myself about celiac disease I can help him.  Before this past incident he was never in the hospital or had any issues other than a head cold or flu. I am sure it is a lot to process - but I am a believer in prevention vs. pills when it is available.  Love the man to pieces but URG!!!! He's so frustrating lol (been together 21 years, happily married for 14)

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Posted (edited)
5 hours ago, kareng said:

I assume you will get the kids tested on their next doctor's visit?  

I second this. Are the kids still on gluten?

Forgive me 

I see you answered this.

i have cc brain this week

Edited by Awol cast iron stomach
Changed response was other post

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Posted (edited)

You are incredibly strong and supportive for him. He needs it. 

I may also add his brain may not be working well quite yet to take all this in. This illness can effect us on physical, psychological, and spiritual levels. He may be in denial for now. Also he may not feel up to processing all aspects at once sometime its a gradual process. He may have some mixed emotions about living this new lifestyle thrust upon him. Many of us formerly "loved " the enemy that ills us.

hit the health problems brought up by Ennis first. remind him you love him regardless of this diagnosis and still plan to have a future as husband and wife. That did not change just modified by a new lifestyle.

It is likely your husband's other issues flourished or gained a foot hold even if it can't be clearly considered causative. likely later a connection will be found inflammation based health conditions. I was misdiagnosed for 20 plus years as IBS so it often haunts me that at different junctions in life besides then I was missed when I sought help. A lot of those pieces are explained now.

This is a bit manipulative of me to say, but use the kids as a will to live or to follow the lifestyle.  A bit low I  know, but I know on my hardest days after diagnosis and sleeping for what seemed like 2 years  straight through the symptoms,pain, and withdrawal etc the idea\responsibility to my children I likely passed this on to made me face another day. I still use it now on myself in my bad days.

Lastly, there is self blame, anger, denial, grief you name it that rears its ugly head. be there for him best you can, but ultimately I hate to admit this it's the celiac job to accept and embrace this lifestyle and illness. It will come possibly begrudgingly and for me with sentence enhancers😊

He will. I am optimistic. He does need to heal that brain and many other things. People don't know how messed up an inflamed brain can be and cause issues\thoughts\behaviors . Keep cooking gluten-free get that inflammation out of his body for its a crucial first step.

Good luck

Edited by Awol cast iron stomach
Added and fixed errors

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I'm also a silent celiac, had just quit working at a bagel shop before I found out about 8 years ago. My Dr. had left me a voicemail with the news while I was on vacation. My initial reaction was denial. It definitely took me a few weeks to come to terms with it and not cheat on the diet. My diligence with the diet came with having more knowledge of the consequences and the time it takes to recover from a dose of gluten. Now I would never dream of cheating. He's lucky to have someone so supportive helping him through this life changing diagnosis. 

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I had a good talk with him last night.  He is going to try.  That is a start.  However, he was at his aunts house and was telling her about his diagnosis and she said she has a friend who has it and she still drinks beer, so beer is ok (yes I am aware that there is gluten free beers, however she was not talking about that). She told him that it would be ok for him to have that. I have a feeling that I am going to lose my mind with ignorance 😓

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Has he had his vitamin and mineral levels checked?  We can be low vitamin D, B's, iron etc.  All those vitamin deficiencies add up to problems with the body healing and maintaining itself.

 

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I know how you feel. I too am a male silent Celiac and was told to go Gluten Free because of my blood work (waiting on endoscopy results in a week or so). My wife has been supportive but she is continuing with her regular diet because I have the will power to ignore all the goodies around the house. I know how your husband feels. It is hard because at work or play you cannot go to bars or out to eat without concern. The change in one's diet impacts so many aspects of one's life. The kicker is being a silent celiac with no side effects! Denial is very easy if you cannot see or feel the impact that gluten is having on your body. I would repeat to him the long term impact. That is what keeps me going. Good luck. He is lucky to have you.

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On 7/20/2018 at 10:53 PM, GFinDC said:

Has he had his vitamin and mineral levels checked?  We can be low vitamin D, B's, iron etc.  All those vitamin deficiencies add up to problems with the body healing and maintaining itself.

 

I am going to have to go to the dr's next time with him so I can ask all of these questions.  I have been getting a lot of "I don't knows".  I think it was just a lot to take in.  Next check up we will be ready to ask away lol

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By a copy of the Wheat Belly Cookbook and have him read the introduction. Until you understand that what you are consuming is not wheat, but some mad science experiment where wheat was crossed with poisonous grasses and other things it is easy to wonder if all this noise about wheat is a fad or marketing gimmick.

The book documents how this new poisonous substance is an inflammatory agent that produces all kinds of reactions, side effects, diseases and syndromes - as seen through the eyes of a medical practitioner who helped his patients who had all these issues.

If he understands that "wheat" (the "staff of life" from the Bible) is not what he is eating it can help him make sense of it.

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What a supportive wife!  I went gluten light when my hubby went gluten free some 17 years ago.  I prepared all the family meals and made sure they were gluten free.   My daughter and I did consume gluten, but we had strict safety procedures in the home.  Oddly enough, I was diagnosed 12 years later.  How weird is that?  (They do say the longer you live together, you become one person).  🤪

My hubby took many risks in the old days.  But getting glutened eventually was not worth it.  So, give your hubby time to process it all.  My family was a bit resistant too.  “How much can a little gluten hurt?”  But they saw the results of gluten exposures and they now get it.  Again, it takes time and some repeated education.  

Hang in there!  

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    • OH you love food...well as the gut damage ramps up and gets worse and you immune system gets more testy it can start to associate other foods with gluten. It will start getting confused, your gut lining being damaged can lead to undigested proteins leaking into your blood stream triggering food sensitivities, and allergies. Mine went undianosed for years...results where other complications.
      First came lactose intolerance, then random allergies and other food issues, allergic to corn, whey, and certain other foods make me violently start vomiting like even the tiniest trace of peanuts, soy makes me blow up and nauseated, I got gluten ataxia which damaged my brain and and nervous system cascading to effect the nerves to my pancreas so I can not digest food without taking pills with bovine (pig) pancreas enzymes....meats are extremely limited due to digestion now.
      Last I got Ulcerative colitis.....mine flares to sugars and carbs that get broken done easily into said sugars. SO I can no longer eat carbs, sugars, fruit without bloody stools and crapping out blood globs, and getting distended.
      Pain...well nerve damage took care of that, I feel pressure, but not pain...oh yeah it has its benefits, but at the same time makes telling if I am taking damage hard in all measures of life.
        I wish I and figured out some of it earlier at least not have the pancreas issues....a normal keto/paleo diet with just tons of meats and veggies sounds wonderful. I do cook this way and do catering off a paleo diet, and run a grain free bakery.

      You, like me love food, take it as a challenge, look for ways to change and create recipes that fit the new gluten free diet. I worked concessions etc. before dia, then moved to gluten free bakery and selling at farmers markets perfecting my recipes. I now am looking at opening a food truck with a 100% gluten free menu so I can cook for a living and show others my love for food.
      Heck I even share some of my crazy recipes on one of my blogs here....I make it fit what I can work with.
    • With BO it normally comes down to digestive issues and  breaking down certain foods that either, ferment, rot, or have chemical compounds that do not get broken down right and lead to the odor. Common culprits can be, gluten, dairy, meat, turmeric. While I do not eat meat often due to pancreas enzyme issues, I do notice a ammonia, sulfur, almost cat urine smell if I eat poultry, or red meat.
    • How long have you been gluten free?  A damaged small intestine could have issues digesting any type of food, including fats.    You could also have picked up a virus.    Stay the course (a gluten free diet).    Expect little set backs.  If you are really concerned, see your doctor.  I hope you feel better soon.    
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