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He Keeps Getting Sick! So Frustrated!


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#1 PrincessKitty

 
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Posted 11 August 2011 - 08:42 AM

My husband was diagnosed with celiac two summers ago, via the blood test and an elimination diet. He never went for the biopsy (which I regret now as he wavers between believing he has and not). In October he decided that he didn't need to be gluten-free anymore and went on an all out splurge. :rolleyes: Beer, pizza, sandwiches. After about a month it finally caught up with him but for some reason he still doesn't fully believe he's Celiac (or at least has gluten intolerance). We believe he has DH on his scalp as well (he's gone to over a dozen derms with no diagnosis and the only thing that has improved the condition is going gluten-free).

Anyway, since Glutenfest 2010 we've had several incidences of him being glutened. He hasn't been as careful as he was when he was first dx'd. And, I have to admit, I got a little lazy myself. Our budget had us in a real squeeze so I started trying different products (I always checked the labels but I wasn't as diligent as I thought). Before he went gluten-free he used to get bronchitis every year that lasted for weeks. This past winter was the first one that he wasn't sick at all. He has been glutened at least every other week for a few months. And it's finally caught up to him where he has bronchitis again and just can't get rid of the celiac systems (constant bloating, diarehhea, pain and TERRIBLE moodiness).

I'm just not sure what to do with him. We have a celiac center here and I'm trying to get him in for the 1/2 day session (they do an eval and classes). He just has not accepted the fact that he has to be careful and be a "pain". He hates that he can't be "normal".

I'm just really frustrated with him. This illness has put a major strain on our marriage. His moodiness (from the celiac and due to his embarrassment from the DH) has really made it unpleasant to be around him. Has anyone had an experience like this? I'm so :( that he won't take care of himself!
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#2 stephharjo

 
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Posted 11 August 2011 - 10:54 AM

I had this problem with my husband, but it was with his diabetes. He was diagnosed at 19 and was not happy.HeI had all the proof right in front of him, but just couldn't except the diagnosis. It was really hard for him to change his diet as well. Unfortunately it took years of harping on him and reminding him of the damage he was causing to his body as well him actually experiencing a blocked bowel and eye sight changes to help him realize that the diabetes was affecting his entire body. He used to not even take his medication. He is type 2 and got to where he was having to take insulin as well. He is 28. We have just got him to where he doesn't have to take the shots because he is doing so well taking care of himself. Sometimes it takes the constant and gentle reminders of what can happen to their bodies if the diet is not followed as well as your love. I know it's a struggle I've been there, not with the celiac but I know it affects your entire system as well. I am just now finding out that I have gluten intolerance after many years of misdiagnosis. I have no choice to follow the diet though because if I get the slightest bit of gluten my entire intestines revolt and it takes days to recover. I hope that things start to look up for the both of you and that he finds it easier to except as times go by (but not too much time) also after I found I was gluten intolerant two weeks later I also found I was reacting to eggs, at first I thought I had ate something contaminated. Damage to his intestines can cause him to react to other foods. Ive read that once your body recovers most people are able to reintroduce them back into their diets with no I'll effects, not the gluten though of course. Best wishes to the both of you!
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#3 blueshabooMoon

 
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Posted 11 August 2011 - 11:52 AM

My husband was diagnosed with celiac two summers ago, via the blood test and an elimination diet. He never went for the biopsy (which I regret now as he wavers between believing he has and not). In October he decided that he didn't need to be gluten-free anymore and went on an all out splurge. :rolleyes: Beer, pizza, sandwiches. After about a month it finally caught up with him but for some reason he still doesn't fully believe he's Celiac (or at least has gluten intolerance). We believe he has DH on his scalp as well (he's gone to over a dozen derms with no diagnosis and the only thing that has improved the condition is going gluten-free).

Anyway, since Glutenfest 2010 we've had several incidences of him being glutened. He hasn't been as careful as he was when he was first dx'd. And, I have to admit, I got a little lazy myself. Our budget had us in a real squeeze so I started trying different products (I always checked the labels but I wasn't as diligent as I thought). Before he went gluten-free he used to get bronchitis every year that lasted for weeks. This past winter was the first one that he wasn't sick at all. He has been glutened at least every other week for a few months. And it's finally caught up to him where he has bronchitis again and just can't get rid of the celiac systems (constant bloating, diarehhea, pain and TERRIBLE moodiness).

I'm just not sure what to do with him. We have a celiac center here and I'm trying to get him in for the 1/2 day session (they do an eval and classes). He just has not accepted the fact that he has to be careful and be a "pain". He hates that he can't be "normal".

I'm just really frustrated with him. This illness has put a major strain on our marriage. His moodiness (from the celiac and due to his embarrassment from the DH) has really made it unpleasant to be around him. Has anyone had an experience like this? I'm so :( that he won't take care of himself!

Wow, a Celiac Center, Where at? If only we could all be so lucky to have a celiac center,Terri
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#4 Juliebove

 
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Posted 11 August 2011 - 09:49 PM

That sounds soooo familiar! My mom doesn't have celiac but she does have food allergies and is supposed to avoid wheat and nightshades because of her arthritis. She has told us this countless times. Sometimes she has even told us not to let her eat these things. But then when we do say something she gets a bad attitude and says it is none of our business.

Time and time again she eats the things she shouldn't and then complains and wants sympathy because she is sick. And she always doesn't know why she is sick! It makes us really angry because we are so careful with our diets. She also tends to make fun of us for the way that we eat and says that eating the allergens won't hurt us. Uh huh.

In her case I guess I have to cut her some slack because she is elderly and I suppose she might be forgetting what she is allergic to. Really hard to say.
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#5 PrincessKitty

 
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Posted 12 August 2011 - 05:44 AM

Thank you everyone! He also has a hard time understanding that it takes time for his body to heal after being beat-up with gluten for 30+ years! He did agree to go to the celiac center and we are signed up for 8/22 (BTW we are in Pittsburgh and the celiac center is part of West Penn Allegheny Hospital). So I'm excited about that. I'm going to spend the weekend cleaning out the kitchen again and going through our cabinets. Thanks for the support! :)
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#6 viviendoparajesus

 
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Posted 18 August 2011 - 06:14 PM

the biopsy could have had a false negative so even that might not have been a total help. also cannot change the past. seems to me the bigger issue is his acceptance especially since there are limitations to all the tests. gluten seems so addictive people going on splurges like a drug user goes on a binge or has a relapse. and having withdrawals when you go off it. perhaps thinking about it that way will help you in helping him.

you know him best does he need some tough love and confrontation or does he need love care and concern in a softer approach. even though i might be hurt or upset about my sucky health i appreciate my loved ones observations because they can notice things i miss and ultimately it can help me find the road to better health. after you all talk that might be great to go to the celiac center for some ed, support, and evaluations.

there is so much that goes into eating selecting food, cooking, eating. so i think it takes some care and planning for anyone. it is just a question of what one chooses and why. medical/disease, religious, personal preference, practical, financial, etc. i can relate i feel like a pain sometimes but i have to take care of myself and i try to be real gentle. often times people feel bad they do not see me as a pain they love me and want to have food for me to enjoy. i do not see myself as abnormal. my body does not want gluten so that is what is normal and healthy for me. i see it as a poor person environment fit to live in a gluten based society. i am not abnormal i am me and i am wonderful the way i am. in addition, from what i understand the human body was not meant to digest gluten it does not seem natural. i feel a little blessed to know it is not in my best interest to eat it. i wish i had known years ago. wish i never had any gluten.

since he still is having gluten it can cause him to be irritable, illogical, and quite unpleasant to be around i know i was horrible before i got diagnosed and off gluten.

perhaps seeing a counselor would help since it would be a neutral third party who could help you communicate and work through this difficult issue.

has he read some people's stories. i never was properly diagnosed but from what i understand i think i had dh and it would effect my scalp. i also had horrible warts and headaches and problems going the bathroom. i went off gluten and it was a complete 360 and i felt so much better.

what are his feelings and thoughts? what stops him from staying gluten-free? what makes him binge? what makes him want to go gluten-free?

best wishes!
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Misdiagnosed - IBS, TMJ, eczema, KP, etc
Real Diagnosis - Gluten & Casein (milk protein) Intolerance, Cross Reactivity to Yeast & Buckwheat
Recommend: Tests: Entero Labs Gluten Sensitivity & Gene Testing
Books: * Allergies by Dr. Carolee Bateson-Koch (digestion, yeast, parasites, body pH...)
* Why Do I Still Have Thyroid Symptoms by Dr. Datis Kharrazian (gluten & autoimmune problems)
* Change Your Brain Change Your Life by Dr. Daniel Amen (foods, supplements...)
Supplements: * digestive enzymes, * probiotics (dairy free - Klaire Labs - Pro5)




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