Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

He Keeps Getting Sick! So Frustrated!
0

6 posts in this topic

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!

1

Share this post


Link to post
Share on other sites


Ads by Google:

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!

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! :)

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,599
    • Total Posts
      918,310
  • Topics

  • Posts

    • Hawaiian-style BBQ Shrimp (Gluten-Free)
      Mayonnaise is the key to this recipe, which delivers tasty, tangy, golden grilled shrimp. View the full article
    • Oat Flour making me sick?
      I wouldn't be afraid to use a stainless steel pot that other things had been cooked in AS LONG AS YOU WASH THEM VERY WELL before making her food.
    • to biopsy or not?
      You are MOST welcome! No problem with making these recipes. If you just follow the directions they lay out, you will be absolutely fine! BTW, I chose to make everything using the flour blend they give you the recipe for. It really is better than the pre-made flours you can buy. To make things easier, I make a double batch of the flour blend and put it in a BIG tupperware (plastic) container & keep in the fridge. That way when I go to make anything I just scoop out the amount I need. Secondly, get yourself a cheap little kitchen scale. I got this one & it works great. http://www.amazon.com/dp/B007TCFE0I?psc=1 Mine doesn't have the removable glass or the kitchen timer but otherwise is just like this one. This one is more like the one I got http://www.amazon.com/Ozeri-Digital-Kitchen-Capacity-Elegant/dp/B002IR6OP8 Weighing out your ingredients makes a huge difference & really it's so much easier than measuring everything in measuring cups. As far as the coffee cake recipe..... I changed it a little bit so it would be like a gluten coffee cake I used to make & we loved. It turns out a little more healthy as well with dried fruit I put in it. I didn't make the topping that they do. These are the changes I made. In the batter, instead of the 1 Tblsp. of cinnamon I used 1 teaspoon. In the batter, I added dried apricots & raisins --- I do it by feel so I will say about 1/2 cup of each maybe a tad more.  My Topping: Then in a separate bowl I put about 1.5 teaspoons of cinnamon, about 3/4 cup of dark brown sugar, and some melted butter. Mix the dry ingredients & pour the butter in mixing the mixture with your fingers. You want the mixture crumbly yet moist. Put the batter in the oven for 5 min. & then take out & crumble the topping on top, then it all goes back in the oven & bake according to directions in the recipe. You could add nuts, dried dates, any dried fruits or nuts you like!   Finally, you owe it to yourself to get some really good pans. This for loaves of bread as gluten free bread requires the extra height & support these pans give. You won't have to use parchment paper or make the tin foil collar which is a pita. http://www.kingarthurflour.com/shop/items/bread-loaf-pan-9-x-4-x-4 These are great for making the dinner roll recipe into burger buns: http://www.kingarthurflour.com/shop/items/individual-pie-and-burger-bun-pan
    • celiac disease is psychosomatic
      Actually, there is a place I could complain to about how my request to amend my record was handled. zthey really messed up onthis one. I think this doctor was too careless to set a HIPPA policy in place or doesn't pay attention to generic forms included to fill out with new patient forms. I'm debating whether or not to file a complaint. If the doctor adds derogatory remarks to my report, I will definitely file a complaint. I really should file a complaint for all the patients who are mistreated, but I don't need more stress in my life. I have found doctors like her create stress or sometimes it's best to say goodbye without further contact. Can I Appeal if a Covered Entity Refuses to Make an Amendment? Maybe. An institution must accept complaints about its health privacy policies and practices. Filing a complaint with an institution may not be the equivalent of filing an appeal of a denial of a request for amendment, but it may help if it forces someone new at the covered entity to review your request. However, some institutions may accept formal appeals. Consult the institution’s notice of privacy practices to see if there is an appeal method for a denial of a request for amendment. Talk to the privacy officer at the covered entity to see if you can obtain help. You can also complain to the Secretary of the federal Department of Health and Human Services about how your request was handled. The Department’s Office of Civil Rights processes complaints. You can find information about the process at http://www.hhs.gov/ocr/privacy/hipaa/complaints/index.html. You have another alternative. When a covered entity denies your request for amendment, it must tell you that you can request the covered entity to provide a copy of your request for amendment with any subsequent disclosure of the disputed information. In some instances, it may be important to make the request. Remember that the covered entity is not required to tell others about the dispute unless you ask.    
    • Johnny Carinos
      According to Johnny Carino's' gluten free menu, the potato soup is safe to eat. However, their allergen guide says the soup has wheat. Anybody know which is right? I contacted my local restaurant and sent an email to the email address listed on their website. However, my local place did not know, and no one has responded to my emails yet. I would love to try this restaurant, but now I am worried if it is safe.  allergen guide http://pmgdata.s3.amazonaws.com/menu/75327/pdf/allergy_info_guide_7-21-13_8731.pdf   gluten free menu http://glutenfreeguidehq.com/johnny-carinos-gluten-free-menu/    
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,699
    • Most Online
      1,763

    Newest Member
    InfoSante
    Joined