Confused Boyfriend Of Someone With Celiac's

[ryan5231]

Hi guys,

 

I've read through a couple of the posts, but I'm not exactly seeing my girlfriend and I's questions so I'm starting a new thread to ask some questions. Hopefully that's ok.  I wish the doctors were a bit more responsive, but we're still confused about a slew of things.

 

A main question is that my girlfriend doesn't really know when she's had gluten.  There are times when she knows, but for the most part, she really can't be sure when she has/hasn't had food with gluten in them. Do any of y'all share this experience? It'd be so much easier for us if she had symptoms so we could know what to stay away from.  Any suggestions on this would be super appreciated.  Are there any ways to test if one has had gluten?

 

How important is it for the house to be free of any gluten foods? I've trashed all the things that are gluten foods like breads and cereals, and just wondering how some of you deal with these issues within relationships? I'm more than happy to have the house completely gluten-free, but just want to know if this is overkill or necessary? * There are times when I'd like to make something quick, for myself, like a burger or a hot dog, but so far I'm not a fan of the gluten-free buns.  Conversely, I'll sometimes grab a sandwich for lunch and just make sure to clean afterwards.  Is that ok or I should I simply not be bringing gluten foods into the house at all? 

 

Have y'all tried the app, find me gluten free? My girlfriend and I are pretty hesitant to try places that are even regarded as celiac friendly just because of the place.  For instance, we won't even go into a restaurant that has pizza for fear of cross contamination.  One of the celiac friendly restaurants here in San Francisco is Tony's, which has normal pizza and gluten free pizza + it has the label of celiac friendly, but we're still hesitant to go simply because it's a pizza place. How do you guys approach these situations?

 

In the event that someone with celiac's ingests small amounts of gluten, my girlfriend and I are under the impression that everything is essentially undone.  This is causing my girlfriend's days to pretty much be ruined if she accidentally has something with gluten in it.  For instance, she loves the gluten-free crackers by lesley stowe's and we just realized that there are some that say gluten-free but have made in a factory with gluten.  So I wanted to get a better grasp of how much of a reset this is.

 

I completely understand that some of these things are going to be individual, but any information would be great.  I've been reading around and trust you guys more than any article I've found on the internet.   

[mamaw]

first off kudos to you for helping try to keep your girlfriend safe from gluten... I'm sorry but I'm on my way to a meeting at present but I did look quickly into the leslie stowe crackers...I do see the oat ones are made with gluten-free oats. I see where others are wheat free... Not sure what she is eating but wheat free does not mean gluten free.....The oat ones are labeled gluten-free & should be fine the wheat free no.....

I hope someone else can reply with your other ????'s , if not I will when I return in the am.....

[Zebra007]

Hi,   What I can tell you is that it takes some time to get to a place where you know for sure that you are gluten free, its tricky at first, we all make mistakes, but doing some research on what foods contain gluten would be helpful, as being more informed will help you both feel more relaxed.  What I personally noticed was that once I had got into a fixed routine, and had not touched anything for months with Gluten in,  an accident would be like a freight train hitting me, very nasty  indeed!!! and so the longer she goes without gluten the harder and more noticeable it will be if she has a slip up/accident  that's my understanding of  it. 

[Jays911]

Cleaning up after your sandwiches, etc. Should be fine. As to restaurants, some pizza and pasta joints are the best around. As to,Pizza, Pie Five, Godfather's, Pizza Hut and Uncle Maddio's are great. The various Spaghetti Factory variants usually have good gluten-free entrees. It is the fast food joints that are the hardest to deal with. Kudos to you for caring.

[squirmingitch]

For starters read this entire thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

That will give you a whole lot of information.

 

And I also applaud your support of your girlfriend!!!! My hat is off to you!

 

If you eat or drink gluten then your girlfriend can get glutened when you guys kiss unless you brush your teeth very thoroughly before any lip locking happens.

 

I do not eat out at all. Not worth the risk to me. I have the skin presentation of celiac disease called dh for short (dermatitis herpetiformis) and the antibodies get deposited under the skin & can stay there for a long, long, time and make you itch like there's no tomorrow so I just do not risk eating out. I do not immediately get gi symptoms to tell me I have been glutened.

 

Yes, when a celiac digests any gluten, even trace amounts, it damages the villi in the small intestine so she needs to be as clean as possible all the time forever. 

[MycasMommy]

Yep!  Hats off to you.  I cannot begin to tell you how lucky and I am how much I love my boyfriend for all of his support. It has meant the world to me. I cannot stress how much, really. He had the advantage, if you want to call it that, of us KNOWING when I had/have gluten by accident because I end up vomiting and it scares him when I get so sick. One of the best things he did, and he did not HAVE TO, was to be the one to say " you know what? Its a gluten free home for all of us!" .  It took away so much of the danger and has been a life changer for me. Really.  Can I underline that?  probably!  He is so great.. whenever we are going somewhere to eat at a friends, HE is the one who talks to them to make them understand the seriousness of it, and make sure I am safe EVEN THOUGH I CAN DO IT MYSELF. It is an act of love that I cherish deeply. When he wants to have gluten.. he goes out to 5 guys or whatever is his poison. He is always mindful to brush before kissing me if he has eaten gluten too. While I realize that he had more motivation because of the severity of my reactions, it has none the less, been a boon to our relationship. I put his well being before mine.. and obviously, he does the same for me.   I have read some sad stories here about husbands not doing these things, and in fact... complaining because their wife was always so sick etc...  and the lack of support for something that is so ... serious ( i am using that word a lot, no?) was heartbreaking. Heartbreaking because I get the exact opposite and I am so grateful that words do not do it justice. My heart skips a couple of beats when I think about all of this and how much I am loved.

 

 

ETA:  Best way is to only eat at home until youve both got a handle on it (and you will get there!) and READ EVERY LABEL EVERY TIME.

[cyclinglady]

We have used Find Me Gluten Free. However, we check the reviews for ones posted by those who actually have celiac disease. There are plenty of people who recommend these restaurants but eat gluten free only because they think it is healthy. Plenty of restaurants who think that by offering gluten-free pasta, they have a handle on keeping it gluten free during the cooking process. We like to see comments stating that gloves are changed, the owner has celiac disease, food is prepared in a separate location and so on.

We always talk to the manage or head chef. ALWAYS! Even if the restaurant has been trained! If we get that "deer in the headlight" look, we leave. Seriously! If with friends, then we sneak into my purse for our emergency food or head to the car for a quick bite and then return just about when everyone else is served. We just order drinks or coffee. In a bar, I like my drink in a to go cup. I worked in a bar during college and I know just how well glasses are cleaned on a busy Saturday night!

We find that the better restaurants with head chefs are good about keeping things gluten free. Fast food and simple diners are usually out but there are exceptions.

Drive down to the Spaghetti Factory in San Jose, if you get a chance. They do a good job -- they'll even show you the food prep area. Their menu will not guarantee gluten-free (CYA legal statement) but they ask you to talk to the manger and when it is delivered, it has a gluten-free flag stuck in the dish. PF Chang's does a great job too. We wandered around Chinatown last year but never found a gluten-free restaurant that we felt comfortable trying. But we found one just down our street. Turns out one of the employees's sister has celiac and he worked with the manger to train the rest of the staff.

We try to purchase gluten-free certified crackers. We buy tortillas that are gluten free but made in a shared facility. But let's face it, the line is never shared. Sometimes you just have to call the company to confirm that.

Hope this helps!

[Zebra007]

For starters read this entire thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

That will give you a whole lot of information.

 

And I also applaud your support of your girlfriend!!!! My hat is off to you!

 

If you eat or drink gluten then your girlfriend can get glutened when you guys kiss unless you brush your teeth very thoroughly before any lip locking happens.

 

I do not eat out at all. Not worth the risk to me. I have the skin presentation of celiac disease called dh for short (dermatitis herpetiformis) and the antibodies get deposited under the skin & can stay there for a long, long, time and make you itch like there's no tomorrow so I just do not risk eating out. I do not immediately get gi symptoms to tell me I have been glutened.

 

Yes, when a celiac digests any gluten, even trace amounts, it damages the villi in the small intestine so she needs to be as clean as possible all the time forever. 

I rarely eat out too, because where I live its far too risky I do wish sometimes that I had that option, but like yourself I just find it much safer to eat at home and then meet friends for drinks later.  Also most people aren't really interested in other peoples diet restrictions, its a bit annoying for them sometimes, and so I would rather enjoy home made food than feel like I am annoying people, that said, my diet is difficult now that I cant have dairy too.

[RMJ]

I rarely get symptoms eating gluten - I almost wish I did so I could tell when something I eat is contaminated!. How was your girlfriend diagnosed? If she had blood tests for antibodies she can be retested after trying to be gluten free for 6 months to see if the antibody levels are lower or back to normal (for some people it takes longer than 6 months to get back to normal levels). I started by not eating anything with gluten ingredients. That decreased my antibody levels significantly, but after two years my antibody levels are still not all back to normal, so now I am being stricter (avoiding any chance of contamination).

How much gluten a celiac can eat without doing damage varies from person to person. Scientists have done studies feeding celiacs small amounts of gluten, some react (determined by intestinal biopsies) at very tiny levels, others can eat a little more with no effect.

One gluten accident is a setback but is NOT going to undo ALL of the good of a gluten free diet. When doing a gluten challenge people eat one or two slices of bread for 2 to 12 weeks to be sure that antibody levels and/or biopsies will show that gluten had an effect.

[bartfull]

Just to clarify what RMJ said about amounts of gluten that some folks can tolerate - The "standard" is under 20 parts per million. That is what most gluten-free foods are tested to. There are some folks who are "supersensitive" and cannot tolerate even that much, but I didn't want you to make the mistake of thinking a little is OK.

 

The 20PPM test means there are 20PPM or LESS. Tests that will detect even lower amounts are difficult and very expensive, and since "experts" have determined that MOST celiacs can tolerate that much, that is the test most companies use. Somewhere around here there is a picture of a piece of toast with a tiny black dot on it that illustrates what 20PPM looks like. That dot is a lot smaller than the average crumb. So be aware that one little crumb will make her sick and damage her body.

[RMJ]

I definitely didn't mean that a little is ok! The size of the tiny crumb that is harmful varies from celiac to celiac but it's always a tiny tiny crumb.

[CK1901]

If your girlfriend is newly diagnosed, it may take some time to tell the signs of being "glutened." When I first got diagnosed with Celiac Disease, my overall symptoms improved pretty quickly just from cutting out gluten-containing foods. It wasn't until about six months in that I noticed my symptoms (rash, stomach issues, fatigue, etc.) had a strange resurgence, despite maintaining the diet. It was around that time that my boyfriend and I got serious about preventing cross-contamination and dedicated the kitchen an entirely gluten-free space. I haven't had any kind of chronic problem since then. It can be tricky figuring out what has gluten in it and what doesn't. Once you get into a groove, find your favorite brands, and know what to look for, it becomes a lot easier.

[Wheatless32]

If you want there to be no conflict and for her to be healthy and happy, go completely gluten free. People tend to get more sensitive over time as they avoid wheat more, so if you want to it to be a happy long-term relationship, hop on board the boat.

 

Really there is no other true answer, any bit of gluten you bring into your life, increases her chances of getting sick.
Would you want to do anything else, that has a possiblity of harming your girlfriend, when there are so many alternative options and rescources available?

 

Check your shampoo to make sure it doesn't have wheat, I had a girlfriend who got me mildly sick for a while that way (1.5yrs after diagnosis). I had a suspicion when the smell of her hair started to really turn me off and make me space out and get tired. It actually long-term made me less comfortable with, and less attracted to her, as a primal part of me knew she was bad for my health, and smelled like something I was allergic to. Also if you are eating wheat it will likely get on your clothes/personal belongings a bit, and possibly get her sick down the road if you guys are hugging/being close. Also probably obvious, but if you eat wheat + kiss her, you will get her sick. There aren't really are no reasons to stay eating gluten if you are dating someone with it., unless you plan to dump them in the near future

It might seem scary at first, but look at it this way - you're going to be learning a TON about food, will eat better, and if you're smart, become a pretty good gluten free cook! Also if you get her sick she might get skin problems . . .not exactly hot.

Best of luck, you are on a great path asking all of these questions and I know that for people with Celiacs, it means a ton when people are willing to take the time to get 'on board the boat' with you, and truly be a pillar of support for someone.