Very Discouraged!

[tcla2013]

I am writing as the wife of someone who has been diagnosed with celiac disease (about a year ago now).  At first we thought "hey, this won't be too bad - we just need to buy more fresh whole foods and things labeled as gluten-free....piece of cake!"  WRONG!  It is almost a year later and we have cut out dairy in addition to gluten and we have gotten very serious about cross contamination (he has his own toaster and condiments, etc) and we don't eat out anymore because we don't trust restaurants even when they offer gluten free menus.  My husband is still suffering from celiac symptoms - regular diarrhea, gut pains, gas (really really foul smelling I must add), fatigue, and has even progressed to NEW symptoms he never had before his diagnosis and new gluten-free diet - he now gets a rash on his elbows and back of knees and on his bum and has much more intense reactions than he had before.  We just feel like everything is getting worse instead of better and we really don't know what else to try.  We went to see a nutritionist who seemed to know less about celiac than we did, which was very disheartening.  The advice we keep getting from doctors is to keep avoiding gluten....but it isn't working.  I guess I am just hoping to find some sort of encouragement or advice or suggestions for where to go from here....what else could we or should we be eliminating?!  I just want him to feel better.  The diet is so restrictive and difficult, but it would be worth it if it actually helped him feel good. Going through all of this and living such a restrictive life style is so deflating for him when he isn't seeing any improvement and is actually feeling worse.  He is 27 and had been having symptoms for years before his diagnosis, so I know there has to be some pretty serious damage done to his intestines over time.

 

Any insights or advice would be so appreciated.....thank you!!! 

[sunny2012]

Is your kitchen gluten free? When I was first diagnosed nearly 20 years ago, my family wanted to remain gluten-filled. I kept getting sick over and over. And as I healed, I got even sicker from the smallest amounts of gluten. We have a gluten free kitchen now.

I can only speak for myself but the less gluten that I have in my diet, the worse my symptoms seem to be.

 

It is so easy for people to touch gluten and then touch other things followed by the Celiac touching that contaminated surface and getting sick.

Not sure if you threw out everything when he was diagnosed. If you used flour in your house, it gets micronized in the air then settles on everything. An open sugar container will have a layer of flour on the top, someone sticks a spoon in to get sugar and mixes it in and thats enough to make a Celiac sick. 

You may have cleaned up this sort of stuff. I can't tell from reading

[hrenee101]

Has your husband had blood work done to see if his antibodies are still high or normalizing. If he takes any medicines or vitamins double check to see if there are any sources of gluten in those. 

[heatman]

For me figuring out additional sources of gluten has been maddening but here's what I've learned in the past year (when I went gluten-free) that has helped. First, it's really important to replace anything in your kitchen that's wood or plastic or scratched. It's expensive but well worth it. I started feeling better when I replaced all my spices and did a thorough washing of the cabinets and drawers. Second, I can't touch oats, even the gluten free ones. I also can't eat beans, although I'm trying certified gluten free ones soon (have to order them online) and hope they'll be okay. Foods that have been prepared in a facility that processes wheat products can also bother me. Third, I started taking a probiotic that has been helpful in healing my gut. Now that I've been gluten-free for a while, any exposure to gluten ends up being a bigger reaction than it used to be. It can be maddening but that seems to be the case for me. Best of luck figuring it out!

[frieze]

i would suspect continued glutening.  take the household gluten free, and see if that helps.

[BlessedMommy]

Did you replace all the scratched up pans and wooden spoons? What about old cutting boards and colanders? Do your pets eat gluten free? Have you checked all personal care products that go in or around the mouth? (lip balm, toothpaste, etc.) Have you checked any medications or supplements?

 

Do you brush and floss before kissing? I think that I got glutened once by my husband by kissing him after he ate pizza. 

[squirmingitch]

Go back through this thread --- the Newbie 101 --- and make sure you didn't miss anything. I agree it would be best to take the household gluten free and also have him tested to see what his antibodies are doing. 

 

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

[julissa]

I agree with all the posters, and I also took my house gluten free. if others want gluten, they can have it out of the house, I have to know my own home is safe for me. I also replaced most of my kitchen tools, including pots and pans. 

 

he may also have other issues besides gluten. after my diagnosis I felt better, but not 100%  I also am allergic to chocolate, dairy and soy now. good luck! I hope you get it all sorted out and he feels better. 

[tcla2013]

Our house is not completely gluten free.  I am not opposed to going to those lengths though if that's what it takes.  We have given him his own toaster and condiments and we wash everything in our dishwasher on the "sanitize" setting so it basically gets super hot.  I am very cautious and careful about not crossing our foods - the main reason I hesitate/feel reluctance towards having a gluten free household is that we have small children and I worry about them and their nutritional needs.  I hate to give up the healthy whole grain products that they are given now because they need it! They are so picky it isn't as easy to supplement their diets in other ways. The other problem we run into with creating a totally gluten free environment is that my husband is a firefighter and he lives at the station every third day.  I don't think there is any way he could create a gluten free environment there - everything is shared....utensils, cookware, refrigerator, etc.  The guys on his shift are great and work with him to make gluten free meals each night - but the gluten is I'm sure still in the environment from previous shifts.

 

He was also allergic to many other foods as a small child (his parents assumed he grew out of them, but I'm not so sure).  Does anyone know the most common foods OTHER than gluten in which people with celiac might be prone to sensitivities? Just wondering if we might be able to try eliminating things other than dairy from his diet and see if it helps.  The person who commented on not being able to tolerate even the gluten free oats - that is surprising but good to know!! I know he uses that as a staple for his breakfast (we get the bob's red mill gluten free oats).  I then start wondering what he can eat for fiber and protein sources if, like you, he isn't tolerant of beans or even gluten free oats. It's all just overwhelming!

 

Thank you so much for all of your feedback!!!  We will definitely schedule an appointment to get his blood work done and recheck his levels - hopefully there will be improvement there. Maybe a general food allergy/tolerance test is in order too?

[ravenwoodglass]

IMHO before you start eliminating more foods he needs to be strictly gluten free for a bit first. No sense in dropping foods he doesn't have to drop. 

It is doubtful that even being careful and trying to cook gluten free that eating at the firehouse is safe for him. Can he bring food with him for a while and see if that makes a difference? If he really likes hot cereal for breakfast have him give cream of buckwheat a try. Bakery on Main granola is good also warmed with hot milk or dairy substitute. There are plenty of sources of fiber and protein that are not beans or oats. Veggies, fruits, brown rice, wild rice etc for fiber. Fresh meats, chicken, fish, eggs, nuts etc for protein. 

If you can make your house as gluten free as possible that would also help. Have the kids eat at the table when they are eating gluten foods like a sandwich and they should wash up after. There are good gluten-free snacks and cereals, pastas etc that can be used instead of gluten and many are quite good. 

It is overwhelming at first but all the trouble will be worth it when he is feeling better. Oh one last thought, if you are still eating gluten do make sure you are brushing your teeth before you kiss. You can gluten him if you don't. 

[mbr22m]

I have problems with corn, soy and dairy, in addition to gluten. A lot of processed foods (even if certified gluten free) makes me feel awful, especially if it contains GMO corn, soy, etc. I read something about 'cross reactive' foods worth a read.Open Original Shared Link

I also had the opportunity to see Dr Alessio Fasano speak at a celiac convention and he said it only takes 3 grains of gluten the size of a grain of sand to make someone with celiac ill, so definitely agree with other posters about totally gluten-free kitchen. Also, shampoo, conditioner, shower gel, toothpaste, etc. I was getting a rash from makeup and lotion that contained gluten. Abes market and vitacost online have many gluten free bath and body products.

[squirmingitch]

My thought is that he's getting the worst of cross contamination in the Firehouse. It's fabulous that his co-workers are so supportive & make gluten-free meals but I'm thinking the problem does not lay with what they are cooking as it does with what they are cooking IN. Those pots & pans have to be cross contaminated as well as the cooking utensils, cutting board, etc. Can you make him meals he can take & then just nuke in the microwave? Or soups/stews he can take in a thermos. Sandwiches made in your home he can take. They must have lockers at the firehouse where he could store a pot, a pan, a plate, bowl, a clean dish towel etc...

There are neat microwaveable plates that have separated sections in them and tight fitting covers that will hold a whole meal so he could just zap it to heat & eat at the table with the rest of the guys.

 

I also agree with what ravenwoodglass said as well as what she said about making the home as gluten-free as possible. 

[bartfull]

Please don't fall for the cross-reactivity myth. While there IS such a thing as cross-reactivty when it comes to ALLERGIES, there is no such thing as celiac cross-reactivity. You will find that most people who claim there is are trying to sell you something.

 

The University of Chicago celiac center is the best source of good info on celiac and this is what they have to say about it:

 

Open Original Shared Link

Open Original Shared Link

[Nikki2777]

There's got to still be gluten going on there.  I think he should be bringing his meals to the firehouse and also looking for sources of hidden gluten.  Soy sauce is a big one.  I don't drink beer, but I've heard even the supposed 'gluten free' ones can be risky (please don't flame me - I don't know if this is true), licorice, etc.,  places people wouldn't expect it.

 

Good luck.

[bartfull]

No flame for that, Nikki. While there are some beers (Bard's comes to mind) that are safe, there are some that are what they call "gluten removed" that'll get you sick every time. And Twizzlers have gluten, so you're right about some licorice not being safe. It all comes down to reading every label every time, even if it is something you've bought before, or even if it's something you'd never imagine could have gluten.

[ezgoindude]

Evening!

 

Just my two cents, I don't fit the criteria for celiac so they've been hesitant to give any diagnosis, but i'll tell you what, with the smelly gas and diarrhea (which I almost always have) I started taking Pancreatin from Twin Labs (several with every meal, a few for snacks) and if you eat the right foods my diarrhea has almost entirely resolved.    If I eat too much fat, or too much fiber, or ANY red meat, or too much carbs I tend to slide back into bad gas but otherwise it is nothing short of a miracle.  Many bowel disorders or diseases put alot of stress on your organs other than just your stomach.

 

Some other examples is I cant the skin on chicken, or too many sweet potatoes/any grains,  eating raw carrots is extremely difficult, beans if not cooked very long can be problematic, again maybe I have celiac? maybe leaky gut? maybe unknown forever? but digestive enzymes have really helped, most over the counter enzymes are worth a shot.

[cyclinglady]

One of our forum members is an MD (newborns - neonatologist) with celiac disease. She finally had to ban gluten from her house as she was getting glutened by her kids! I am sure her kids are healthy without gluten on a daily basis.

Hubby and I are both gluten free. Our kid is gluten-free in the house. She gets pre-packaged gluten food in her lunch. She eats at restaurants and at her friend's house. She washes her hands every time she arrives home (that includes her friends and helps with germs too!). She is super healthy and eats better than her gluten eating friends!

I keep a big bin of kitchenware at my parent's house, along with a five-day cooler. Haul that stuff to my parent's lake house too where 15 or more stay. Keeps us safe while we are visiting. You might consider this for his job too.

[BlessedMommy]

I have small children as well and find it very difficult to avoid glutening if gluten is consumed very freely in the house. Little kids typically take multiple reminders to wash their hands and face. They drop a lot of crumbs around, touch gluten free food with contaminated hands, give adults slobbery gluten filled kisses, put their hands all over adults faces and try to play dentist.

I finally decided that regular gluten consumption in the house is too risky and stressful for me. Most meals are gluten free here. If I want to make sandwiches for the kids (helps stretch food budget) on occasion I just make sure that it's at a time where I can do all the food prep and that I can give them a bath and a change of clothes afterward. Limiting food choices is generally the way I go though these days, even out of the house because it's just easier.

[Zebra007]

Hi, I completely agree with cycling lady, I think you are trying your best to please everyone and its not really working, and the problem with that is  that your husband could end up getting even sicker, with something far worse, which could ultimately effect his work, and so I would make everything in the house completely Gluten free.

 

 I happen to think your children will be healthier for it, I think gluten free oats is a good breakfast which your children could eat.  Children nowadays seem to dictate whats on the table, and really in your situation I feel like you need to explain to them that this is what is being served, and why, as daddy is sick. (you can put honey or Maple syrup on the oats to liven it up for the children)

 

I agree with the idea of packing food for him to take to the station.

 

Also if he is Dairy intolerant its important to look closely at any meds he may be taking as many contain lactose.

[pipermarau]

All the posters made great points about checking the pans and spoons, cleaning the kitchen, reading labels, etc, but I would like to throw in support for the effort to go totally gluten free as a team.  My two cents worth is from personal experience with a boyfriend after I was diagnosed.  After a year of fighting it we realized he had to go "all the way" or never touch me again.  That means no cheating at the drive through during lunch.  Yes, he could and often would change clothes, shower, brush his teeth, and drink lots of water after the meal, but it was the times the he forgot that turned out to be the worst.  Since I cannot afford those little slip ups he did make the change because my health called for it.  You can still keep a healthy whole-grain diet, just minus the wheat, rye, and barley.  I would also like to point out that when you are buying for one type of diet it also helps with money.  Some of (ok nearly all) the snacks are expensive if you want to get more than chips, but the baking options are not bad if you are not too busy to try a few recipes.  I can still make all the "good stuff" like fudge, layered cakes, muffins, and cookies.  I am sure you have a good idea for meal plans but you should also make time for snack plans that you can both enjoy and keep the kids from going without.  I loved cooking with my parents, they treated it like fun mad science.  Since your kids are young they will adapt well to spending more time preparing meals, and it will teach them how to remain respectful of the gluten free rules.  There are also ways to make everything dairy free, even turkey gravy from scratch.  When your husband is at work he should be able to keep his own microwave and possibly a crockpot.  There are very simple recipes that he can toss into the slow-cooker at work if they do group meals.  You can always prep the meat and veggies,and he can take it in, add water, plug it in and enjoy later.  If he can have BBQ sauce then he can have any meat cut he wants like ribs or even sloppy joes.

 

Once the home is free of all glutens (even pets) then he can relax there and focus on how to control his work environment.  He really should finish letting his body get through the healing process without those little bits of cross contamination before cutting out other foods.  I would suggest leaving out corn and oats for a bit, just for his personal comfort since those are a bit rough on the exit, just make a small portion for yourself since they won't be toxic for him.  With some strategic cooking you can get through this without missing good healthy food.  Check your freezer aisle for pizza, Udi's makes several gluten-free pizzas as well as Amy's.  They tend to use organic and whole grain stuff and the kids would not notice much of a difference.  Walmart has gluten free "oreos" that, I find, tastes the most like the Oreo brand cream..  

 

On the subject of his dairy issues, make sure you look in to both lactose and casein. If he is only lactose intolerant there will be dairy products he can have if they are made properly.  If he has the problem with casein, then cheese from goat's milk would be a good replacement for pasta dishes.  the Specific Carbohydrate Diet has some good science behind it and can help you with answering the dairy question.  That book helped me when I first started cooking everything at home and included advice on how to eat the most "comfortable" foods for digestion until I was healed. 

 

Good luck and stay strong.

[Zebra007]

pipermarau, Good advice, but you mentioned pets, could you explain further what you meant, because it sounded like you meant get rid of them? could you elaborate on that, as for many people pets are very very important, and that would not be an option.

[bartfull]

Most cat and dog foods have gluten. There are gluten-free options, and yes, they are more expensive, but it would cut down on the chance of getting glutened from the dry food dust, and also from doggie kisses. Cats of course, groom themselves with their tongues, so petting the cat and then popping something in your mouth might result in a glutening.

 

That being said, I have a cat and I can't even GET gluten-free cat food where I live. (They do have gluten-free dog food here, but they aren't enlightened enough to realize celiac folks have cats too.  )  So I use a scoop for her dried food, then scrub my hands. And although I pet her a lot, I ALWAYS ALWAYS ALWAYS wash my hands before eating ANYTHING. Even when I'm at work and haven't touched the cat.

[BlessedMommy]

Bartfull, I order my kitty's grain free cat food through Amazon's subscribe and save program. Great price and it's very convenient to have a new bag delivered to my door every month. Plus, the kitty loves it!

[MycasMommy]

Yes Bartfull! order that online!  If you do it in bulk, the shipping is free too! SO worth it!

[Zebra007]

Jeeez this is a nightmare, one thing after another!! but luckily I don't feed my pets, my husband does,  however I do pet them, and I ALWAYS wash my hands afterwards ALWAYS, so I am thinking I should be fine.