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What Do I Do Or Say?

peaches102984

By peaches102984
in Coping with Celiac Disease

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peaches102984 Rookie
peaches102984
Posted

Hello,

I am kinda out of it right now...due to being up since about 3 a.m! My name is Casey and here is my story from this early morning I had. (I guess I just need to vent and get some encouragement)

First of all my husband is the one who has not been diagnosed with celiac disease but soon we will be on the right path with that. The gluten free diet has done alot of good with him so we are trying to stay on it. For some reason its hardest for my husband. My 3 year old daughter was diagnosed in Oct. which was great but odd. She, just this year started showing signs and symptoms of the disease. My husband on the other hand has had "D" for going on 3 1/2- 4 years. Bathroom trips could go up into the teens almost the 20s. He has been told all sorts of things even your colon will probaly have to be removed in about 2 years. So now at the beginning of this year I could not take it anymore. So I research for about 2 days and found Celiac Disease. I had him try the diet a few times, each time seemed to do better than the last. So just about 3 months ago we agreed to go Gluten free. Right......he just can't seem to stay away! Its a scarry thing, I tell him all the time your killing your self you know that? Well we have been doing good for about 2 weeks thats along time but not along time. It hasnt really been totally gluten-free. So last night we were out and hungry so he got a panini sandwich thing. He ate the first all of it bread and all.....then the second he took most of the bread off....but he was already well on his way to pain! At about 2:45 a.m. sound asleep.....no way!! He screamed and curdled so loud but he was out of it at the same time! So in and out of sleep he is crying and saying his intestines feels like it is on fire.....I asked him if he wanted me to call 911. He said no and would fall back out. This went on and on until I just got out of bed around 4:45 because my 3 yr old was up by then. I almost had to take my daughter to work with me .....and I don't have a car so we would have been walking. I normally ride my bike so that would not have worked! Anyways....so now I am angry and I have told him this morning that I am because if it was an accident it would be different but he knowingly and willingingly ate that panini and I was there for him this morning but now I don't feel like he cares much that I had to go to work. He has done this to him self no one forced him to eat it and I tell him all the time are you sure you wanna do that? Any one got any opinions and thanks for letting me vent even if you dont' reply. :huh::D:)

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Guest j_mommy
Guest j_mommy
Posted

I think that would have been me if I hadn't had a "real" diagnosis. For some dietary response is enough....I needed the blood work and endo diagnosis to be able to go gluten-free. I have now been gluten-free since may and haven't cheated once.

Have you guys thought about testing??? He would need to be eating gluten to do that. Since he's an adult hopefully he will stop putting himself through that pain, which is another thing to consider....you may not want to go the DR route due to the fact he'd have to do a gluten challenge....maybe entrolab?

I'm sorry that all this is going on and feel free to vent!

peaches102984 Rookie
peaches102984
Posted
  • Author

Thanks for your response! Everything is helpful. We have a GI appt. On Wed. the 14th. Kinda worried though, because he has seen alot of doctors over the last 3 years and they have all been more than less dumb founded when it comes to his symptoms. Most have always said he has colitis and then ulcerative colitis and IBD and "you will have to have your colon removed in about 2 years". Its all sooo much to deal with! I have INS through my job so we are taking advantage of that. I do believe that he is one that has to have a diagnosis from a doc. in order to take action. He is an adult and should know what not to eat but like a child he seems to think alittle won't hurt I guess. Its difficult sometimes, shopping for food isn't that bad. We are learning how to make a menu so we can go shopping and know what we are buying doesn't have gluten in it.

All in all he has talked to me today and he is feeling better. I just pray that this just doesn't continue like this.

Thanks for listening

Casey

zkat Apprentice
zkat
Posted

First off, Welcome!

2nd, I know this is not what you want to hear, but in order to get an accurate DX, your husband needs to continue eating gluten until the biopsy, even if the Dr. tells you to go ahead and go gluten free. At least the Appt. is Wed. and hopefully they can get the biopsy scheduled quickly. Once gluten is removed from the diet, your body starts to heal and the damage may not be apparent on the biopsy.

There are somethings that a non-celiac spouse can be sympathetic about, but can't really understand. There is a whole process of mourning that we go through. It helps to find substitutes for his favorite foods. The best thing you can do for your husband once you get a diagnosis is to remove all the gluten from the house-it removed a lot of temptation. The next most helpfull thing is to plan ahead for snacks and meals when you are away from the house. For example, we usually run errands all day on Sat. we will eat before we leave and then depending on what we have going on, plan out our route and where I can get a safe snack. (Wendy's, a package of M&M's etc)

Rya Newbie
Rya
Posted

I totally agree with the substitution. Carol Fenster has a great sandwich bread recipe you can find online (just google "Carol Fenster sandwich bread gluten free"). It's not the same, but it's good.

You also might see if he would be willing to keep a list of things he is craving. Then set up a time where the two of you can look up gluten-free recipes for these foods or come up with a reasonable alternative. The cravings do lessen; I don't know if it is because one accepts it or the intestines heal up and one starts getting necessary vitamins they were missing. See if he would do it for a month (3 is better). Set a date, sign a contract, and plan plan plan.

Good good luck to you.

FootballFanatic Contributor
FootballFanatic
Posted

I wouldn't go gluten free until I got actual results either, and now that I have been diagnosed and read all about it, I see gluten as a poison. I could never put it near my mouth knowingly.

Hopefully something comes back that makes a difference to him, but a lot of people get negative test results and still respond well to the gluten free diet.

I would hope that if you told him the amount of pain and agony he puts himself through makes you scared and makes you hurt, and that he realizes what makes him feel better.

It's a hard situation, but I also know Celiac Disease is a big huge monstrosity to cope with and it takes time to accept it.

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