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Fiance Had UC/J-Pouch & Now Celiacs, In Over My Head....

learning

By learning
in Coping with Celiac Disease

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learning Newbie
learning
Posted

Hi, just found out a few minutes ago that my fiance has Celiac's disease. He had UC since he was born and a few years ago had his colon removed and they gave him a J-Pouch. He has been adjusting fine, except he was having accidents while sleeping 4-5 times a week. Completely unpredictable, couldn't tell if it was anything he was eating or not to cause night problems.

Since his night problems kept happening, he went to the doctor and they tested and decided he had Celiac disease and now he will be going to a gluten-free diet.

I am in over my head, I don't know how to cook already, and now that we are getting married, I am going to have no idea what to do. I don't want to do anything wrong or make terrible food for him. He loves baked foods, and pasta and everything like that, and I know he is already pissed enough that he can't eat the food that he wants to be able to eat.

He says that he feels so much better after having surgery for his UC and that he thinks he doesn't have Celiacs because he says he feels fine. Could the doctor have made a mistake?

He already weighs around 215 and he found out that he will probably gain weight after going gluten-free and he's really upset about that too.

This is all so stressful and I guess I dont even know what I am asking or what I want to hear. I am just worried for him and worried for us. I know this'll be hard.

I also read that it's hereditary. Does this mean that 100% our future kids will have it? If my fiance developed Celiac's after his J-Pouch surgery (which i read is possible) does that mean that his case isn't hereditary?

What can I expect from this new Celiac disease in his life? He was already living with bowel problems before. should I expect it to be worse now? I mean, that past years after his surgery he's been eating gluten and everything and nothing really terrible was happening (besides night problems) so why does he have to go gluten-free now??

Sorry for rambling, just thinking out loud and im just worried.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. I know this new diagnosis seems daunting and it does take some getting used to but it is very doable. Celiac is genetic but not everyone who has the genes will develop celiac. When you have children there is no certainty that they will or will not ever develop it but you will know to have them checked if they have symptoms.

In the beginning especially it is good to go with whole unprocessed foods. Fresh meat, chicken, seafood, veggies and fruits (fresh or single ingredient frozen), beans, rice, potatoes are all gluten free in their natural state. After he has been on the diet for a while then go ahead and add in specialty gluten free items such as breads, pizza crusts, cookies etc. It is a good idea to add each new item in one at a time so if the item has an ingredient that his body reacts to badly then it is easier to figure out what is causing the problem. It is a good idea to avoid dairy at first and quite a few of us have issues with soy so do leave those out for a month or two if you can.

If you live together now or later when you are married you do need to take some precautions if your whole home is not gluten free. He will need a dedicated new toaster for gluten-free bread, replace any scratched non-stick cookware, pasta strainers and wooden untensils and cutting boards. This will keep him safe from cross contamination.

Not all celiacs gain a lot of weight, those are usually the folks that were very thin from the malnutrition to begin with. Some of us can be overweight when diagnosed and find we have an easier time losing down to our ideal weight. I was one of those and was at my heaviest in my life when diagnosed but within a short time I went down to the same weight I was in high school and have stayed there.

You may also find he is a bit moody for a week or two when he starts the diet as many will go through withdrawl. That will pass. Good luck and don't let the diagnosis get you down too much. Since celiac is an autoimmune disease since he has been diagnosed there are a lot of problems that he could have develop down the line that now he likely will not.

When the time comes for the wedding do not be shy about asking your caterer about having a gluten free reception and cake. Many are quite knowledgeable and accomodating the diet shouldn't be a huge issue and more likely than not the other folks at the reception won't even know that they are all eating gluten free.

Read as much as you can here and ask any questions you need to.

Googles Community Regular
Googles
Posted

Hello,

My first suggestion is to take a deep breath. It will take a little while to accept and then change. Mistakes will be made (look at how many posts there are on getting glutened), but it will be okay. There is a steep learning curve, but it will be okay. Take time reading over the board. There are lots of people having gone through this who have a lot of good advice. I would also suggest getting some books on Celiac disease for you and your fiance to read so that you can have the basics all in one place. There are good overview books. I liked Celiac Disease for Dummies when I first was diagnosed. It gave me a grounding and then I was able to learn the details after I had the overview. I was like your fiance and loved pasta and baked items before I went gluten free. However, after giving my intestines a while to heal, I am now able to eat gluten free pasta and gluten free baked goods and don't miss the other stuff as much. That doesn't mean that I never miss some of the foods I can't eat, but I hardly ever notice anymore. I have found new favorite foods.

Celtic Queen Explorer
Celtic Queen
Posted

First of all, deep breath. It will be okay. He's lucky to have someone who loves him so much and wants to help him. To answer some of your questions:

I don't know how to cook already, and now that we are getting married, I am going to have no idea what to do. I don't want to do anything wrong or make terrible food for him. He loves baked foods, and pasta and everything like that, and I know he is already pissed enough that he can't eat the food that he wants to be able to eat.

See if your library has some gluten free cookbooks. There's a thread on here with gluten free recipes. There are a ton of blogs on the internet. See if you have a friend who can help teach you some basic cooking skills.

He can substitute gluten free baked goods and pasta, but be careful because they're a lot more expensive. It's better to try and learn to cook without gluten-free foods as much as possible. Much healthier and easier on your wallet.

He says that he feels so much better after having surgery for his UC and that he thinks he doesn't have Celiacs because he says he feels fine. Could the doctor have made a mistake?

Did he have a blood test or colonoscopy/endoscopy/biopsy? He may feel better because the surgery helped the UC but there may be other issues that he doesn't realize are related to the gluten. He needs to stay gluten-free because if he doesn't he's putting himself at risk for other autoimmune disorders and for certain types of cancer.

He already weighs around 215 and he found out that he will probably gain weight after going gluten-free and he's really upset about that too.

Actually, he might not gain weight. I'm a "fat Celiac" and I've actually been losing weight since I've been gluten-free. And I eat a lot more than I did pre gluten free. But I don't eat a whole lot of processed gluten-free foods. I tend to use those as a treat. I've heard a lot of gluten-free baked goods are higher in calories and lower in fiber and nutrition than glutened ones. So if he eats a lot of gluten-free processed foods, he might gain some. But if he sticks to fruits and vegetables and lean meat, he might lose weight.

I also read that it's hereditary. Does this mean that 100% our future kids will have it? If my fiance developed Celiac's after his J-Pouch surgery (which i read is possible) does that mean that his case isn't hereditary?

It is hereditary, but not all your future kids will have it. If I remember correctly, the number for first degree relatives is 1 in 20, versus 1 in 133 for the general population. His case is hereditary. It was likely triggered by his surgery. Many people carry the gene but don't develop the disease until some sort of "traumatic event" like illness, surgery, pregnancy. If you do have children, you'll know to get them tested early and at that point you'll be a pro at the diet.

should I expect it to be worse now? I mean, that past years after his surgery he's been eating gluten and everything and nothing really terrible was happening (besides night problems) so why does he have to go gluten-free now??

He may feel worse before he feels better simply because it takes the intestines a while to heal and it takes a while for the gluten to leave your system and for your body to repair itself. If he keeps eating gluten, he'll slowly be poisoning his own body. He's already had damage to his body from the UC which was probably related to the Celiac. And his risk of future health issues will be much, much higher. Plus, he might be surprised by how much better he feels off the gluten.

Hang in there. You will get through this. To me going gluten free sounds much easier than having your colon removed.

Skylark Collaborator
Skylark
Posted

Take a deep breath and don't panic. You will be fine.

One of the underlying problems behind UC can be celiac disease. Your fiance was lucky to finally be diagnosed. He must not eat gluten, especially since he's already had so much damage to his GI tract.

The celiac genes are only risk genes. Your kids do have a chance of being celiac but you'll already know how to cook for them and what to look out for.

As far as cooking, there is LOTS of good, naturally gluten-free food. Get yourself a rice cooker right away and consider a crockpot. The rice cooker is a must-have. :) Here's a bunch of gluten-free crockpot recies. Open Original Shared Link You might consider a cooking class where you learn to roast or broil meats, prepare fresh vegetables, and make homemade soups and stews. Don't make the mistake of eating a lot of gluten-free, carbohydrate-heavy, processed food. It's expensive, often has unavoidable traces of wheat, and frankly processed food is not very good for folks with GI trouble.

Di2011 Enthusiast
Di2011
Posted

One thing that will help keep your relationship safe from Gluten Free harm:

Don't eat a big fat piece of pizza or one of bright pink-icing donuts in front of him.

In fact if you can go Gluten-Free along with him you will be very grateful in the long term and he will be extremely grateful in these first few hard weeks.

Skylark Collaborator
Skylark
Posted

One thing that will help keep your relationship safe from Gluten Free harm:

Don't eat a big fat piece of pizza or one of bright pink-icing donuts in front of him.

In fact if you can go Gluten-Free along with him you will be very grateful in the long term and he will be extremely grateful in these first few hard weeks.

This is GREAT advice!

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learning Newbie
learning
Posted
  • Author

Thank you !!

lucky28 Explorer
lucky28
Posted

Hi~ welcome to the forum! I'm pretty new here~ diagnosed in august. it is a bit overwhelming at first but don't give up there is a lot of great advice in the posts here! Unfotunately you will~ at least in the beginning have to cook most meals~ but cooking is like any skill you have to learn~the more you do it the better you'll get at it!

You said your fiance doesn't feel bad, just his occasional accident but if he is like me~I didn't think I felt "that" bad (except when I was gorging on gluten before testing-but that's another story). I didn't realize just how bad my symtoms were until I started feeling better on the diet. I guess the symptoms crept up so slowly I was just coping. This might be what has happened to your fiance also, after some time gluten-free he might be surprised as to how good he feels!

I wish you luck! And a rice cooker is definitely going to be your new best friend!

AVR1962 Collaborator
AVR1962
Posted

The thing that jumped out at me in your post is your fiances wondering if he had a wrong diagnosis, most likely not the case and infact his other issues may have been from the underlying celiac. Gluten does terrible terrible things to the body. I would be overwhelmed too if I was taking this on for someone else but I tell you, read learn and it will make a HUGE difference for your fiance. It is not easy, takes adjusting to emotionally and there will be alot mistakes along the way. Kind of keep in mind, and you actually might have to remind him, that gluten becomes a poison to our bodies so it is not a matter of finding out how much you can tolerate, it's a matter of having none of it in your diet. Best to you both!

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