Needing Guidance / Answers

[Chel]

My husband was diagnosed Tuesday by EGD, but this was only after all titers were crazy high 3 weeks ago. We have noticed different problems over the course of 6 months, but could not put our finger on the real issue. He has elevated liver functions, low calcium, horribly high ANA, very low cholesterol, muscle cramps, increased night time urination (4 -5 times a night), extreme fatigue and now I think depression. His GI thinks he might have autoimmune hepatitis also? I am not sure he can deal with a liver biopsy right now. From what I have read Celiac can cause alot of the same lab results as autoimmune hepatitis. Does someone have guidance on this?

I am overwhelmed by what he can and can not ingest that I feel I am no help. I have looked on many sites and even printed out a list of Gluten Free products from Whole Foods. I have no idea what is good and what is not worth spending the money on. I want to help him and have decided that the family would all go Gluten Free at home, but I do not know where to start!

He has been as Gluten Free as he can the last couple of days. He feel different now knowing what is wrong, and I think lost like I do. Our children will be tested by titers next week and I think he feels guilty for causing them the pain, although he knows it is better to know now then when they are older. He does not want them to go through what he has.

I just need some guidance as I have read so much and still have so many questions! I am on information overload!!!!

Thank you in advance for your suggestions / answers.

[super-sally888]

Hi,

This will get easier. Just hang in there. And he will start feeling better.

A good place to start for the diet is not to worry about all the replacement foods. Just stick with naturally gluten free foods: ie fruits, vegetables, meats, rice, nuts, eggs (he may or may not be able to take dairy - particularly while he is still recovering).

Plenty of information on this site. Welcome.

Sally

[Guest cassidy]

All the emotions you and your husband are feeling are completely normal. Someone will come along and post a newbie starter kit that has some great information.

It is easiest to start with a basic diet of meats, veggies, fruits and rice. The body needs to heal and reading labels is confusing in the beginning. There are lots of great gluten-free products, but some of them are crappy and it takes time to figure out what brands and things you want to try.

It will get easier and your husband will feel better, so it is a good thing that you figured out what is wrong, even if it is a bit overwhelming in the beginning.

Good luck.

[StrongerToday]

Hello and welcome! You've come to the right spot for answers. When i was DX, my dr. (while very kind) really didn't know much... everything i've learned has been from here. I agree to start with basic and simple meals. Check everything - shampoo, lotions, etc. Gluten can be very sneaky - it hides in "regular" soy sauce, licorice, make up. Read posts about getting new pots/pans, cutting boards etc. Don't let it overwhelm you... just take one day at a time! It does get easier, I promise.

[happygirl]

Let me give you some of our favorites:

the best brand of gluten free pasta: Tinkyada. They come in all normal shapes and sizes. I tried every single type, I swear, and threw out every single one. Its probably the favorite of everyone on the board.

Coke and Pepsi, etc., are gluten free.

Some of Swanson's broths are gluten free.

Most normal peanut butters are gluten free...I use Peter Pan. For breakfast, I'll often have bananas and peanut butter.

I have a great recipe for gluten-free banana bread and eat that in the mornings also.

Many of McCormick's seasoning packets (like for tacos, enchiladas, fajitas) are gluten free. Just be sure to read. We use corn tortillas and eat mexican food in our house a lot!!! Seven layer taco dip is a favorite treat for us, too.

A lot of it is potentially just switching brands to find something that works.

There are lots of great gluten free products out there, both "normal" foods that happen to be gluten free, and specialty gluten free products. We eat a lot of "normal" foods in our house. Homemade mac and cheese the other night, potato and ham casserole, roast with veggies, christmas cookies, etc. Feel free to PM me if you would like any recipes or if you have specific questions, I'd be happy to help!

Laura

[Jestgar]

Hi Chel,

It's OK, it's just food. It doesn't control you, you are in charge.

Take some time to read through the posts on this board. I think you'll find lots of people that have gone through problems and emotions that you are going through. Hang in there - it gets better.

[tarnalberry]

Welcome to the board!

First, I want to let you know that the feelings of being overwhelmed, depressed, and maybe a little lost are *totally* normal. You're both looking at changing a major habit that is practically subconscious now. And not just changing, but giving up entirely - there's a grieving process to go through there. Learning the ropes, both on a practical level, and an emotional level, can be tough. But we do all get through it eventually, and you've got a board full of people here to help!

Second, the easiest way to start the gluten free diet is to stick to whole, unprocessed, naturally gluten-free things. Produce, meat, dairy, eggs, beans, rice/corn, etc. If you buy unprocessed stuff, things that you know are made of only one thing, then all you're looking at avoiding is wheat, barley, rye, and oats. That leaves a whole lot of food to make meals and snacks out of! It might, depending on how you eat now, however, make for a large shift in the types of foods you eat. Even if that's the case, many of us still recommend it for two reasons: it's the fastest way to get started as there are no labels to read since you're buying whole foods, and it's the safest way to get started as you're not risking contamination from factories that produce gluten-laden items.

There's a safe/not-safe list on this site (under "site index" on the navigation panel to your left) that's very helpful in identifying the basic ingredients that contain wheat.

In the coming week or two, you'll want to clear out sources of contamination from your home, since you're going gluten free there. That means things like a new toaster, wooden spoons, and consider replacing your cutting boards as well. If you have any non-stick pans that used to be used for gluten containing things, they will need to be replaced if they have scratches on them; pristine non-stick pans are fine.

Keep on reading, and good luck!

[Phyllis28]

In addition to the previous postings I would advise not eating any restaurant food initially.

Also, don

[tarnalberry]

Also, don

[sunshinen]

things to look into:

tinkyada and glutino pastas are the best I have found

kinnikinnick breads and etc. are the best I have found (Open Original Shared Link)

start with simple, plain foods without add ons and then build on your menu as you start to learn the ingredients that hide gluten.

it's a big change and it's hard to learn. you will learn about mistakes you are making for months, but you will both get there! Don't sweat the mistakes, just keep learning. It will be worth it!

[Viola 1]

This is all great advice.

Just one major thing I want to add. If you use gluten free bread, buns, donuts etc. Remember that it needs to be heated to be any good. Breads are best toasted in a new, gluten free toaster. Buns are sometimes just fine is you Micro them far 20 seconds or so. Some donuts, and cakes are nicer if you just warm them up in the Micro.

Welcome to the board and good luck with everything.

[Nancym]

Also, don

[TestyTommy]

This thread is making me hungry!

I'll echo the previous post about keeping things simple. I basically eat meat, rice, fruits and veggies. It gets boring sometimes, but, when you think about it, it's a pretty trivial adjustment if it gives you your life back. It helps me to think of food as a drug --- "If I ingest this, what will happen to my body?"

Big warning: WATCH OUT FOR FOOD ALLERGIES. A lot of us (especially if we were sick for a long time before being diagnosed) have developed allergies to common foods. Ironically, it's often the foods you ate the most of before being diagnosed. I didn't start feeling significantly better until I got rid of eggs, soy, dairy, nuts and corn. So much of the 'Gluten Free" foods are off-limits for me because they have lots of allergens in them. That's another benefit of keeping your diet simple ---

[dionnek]

As far as your husband's symptoms, they are exactly the same as mine (plus I had several more). My liver enzymes have finally come down after 7 months gluten free, but I've been to 10 doctors and have EVERY test imaginable (even MRI of brain for a brain tumor) until I finally went to a GI who tested for celiac. I've been gluten-free for 7 months but still have some problems. I've heard it can take a year or more to heal if you had significant damage to your villi like i did, so hang in there and hopefully it won't take your husband as long to feel better!

Oh yeah, and I've found that almost all gluten-free pastas are fine - I also like quinoa (a grain that substitutes well for couscous/barely/rice, etc.) and eat my "sandwiches" on corn tortillas or Food For Life brown rice tortillas (in the frozen section at Whole Foods). Mission brand corn tortillas are gluten free. I pretty much gave up all bread products for the first 5 months until I got enough good information from this board to try making my own bread. I love Pamela's pancake and baking mix for making banana bread and cookies and pancakes, etc. So far the best bread mix I"ve tried is gluten-free pantry french bread and pizza mix (you bake it in a normal loaf pan for the bread, so it's not really french bread even though it says it on the package). I have heard Anna's bread mixes are great but they are soooooo expensive, and I'm not that into bread yet. I do love Kinnikinnick doughnuts though - nothing like Krispy Kreme but they will do for a special treat (as with all gluten-free bread products, keep in freezer and then just take out individually - I microwave mine for 45 seconds straight from the freezer).