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Newly Diagnosed and So Sad

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I’ve posted the same thing in the DH forum, but am reposting here for additional support.


I was recently diagnosed with DH and am beginning my gluten free journey. I am needing some encouragement. I’m mainly worried about quality of life, not just mine, but even more so my husband’s and son’s. I keep seeing posts saying “I never eat out.” My husband is a chef, food has always been our thing. He’s incredibly supportive, talking about al the creative ways to make my favorite things gluten free, etc, but how do we go out and celebrate our anniversary, or even just a random Tuesday when we’re both too exhausted to cook? And biggest of all, how do we take our son all the amazing places in the world we’ve dreamed of taking him without eating out?? I don’t even mean just huge trips. My brother is getting married next year, will four days away from home really be impossible?

My son is only 3 months old, I’m worried about him missing out on things because of me. I want, like I think every parent does, everything in the world for him. If you have kids, how has this impacted their lives?

I’m really not concerned about the things I can’t eat anymore. I’ll be fine, it’ll be hard, but that’s ok. I’m more concerned about what I can’t DO. If anyone has any encouragement, I could really use it.

Edited by pearl_lake

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We don't eat out now because it's too expensive, but we used to! And my mil takes us out sometimes too. I research what I can eat, ask about how the food is cooked, cross contamination issues, etc, and decide what to get, if anything. I've brought my own food to gatherings and I'm old enough not to care if I get funny looks (which doesn't happen often.)

What happens to me in particular doesn't effect what my family eats and does. There's no reason for it to.

When we visited Europe years ago I didn't have any problems finding gluten-free food as all the places we went were happy to help out, and I didn't get sick even once. This was Paris, Bilboa, Toledo, San Sebastián and many big cities in Italy. I did better in Europe than the us. I'm sure it's even easier now.

there is no reason at all your son has to miss out on anything. My 3 sons sure haven't.

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First off, pretty much anything can be made gluten free or have a gluten free alternative I have been a gluten free chef for over 4 years, I cooked for others with gluten foods before my diagnosis, And I have taken all I have learned and applied it to cooking and using gluten free alternatives. Some are even better gluten free, a roux with potato starch is much better flavor and consistency then one with flour or corn starch by example, and getting a crunchy coating on fried foods using various methods from chia seeds, ground up bean chips, nut meal, and even my grain free bread dried out and pulsed into bread crumbs with seasonings has opened new option for culinary pairing. Stir fry and Asian cuisine I changed over to coconut aminos from coconut secret and their other sauces, which are just wonderful. Lasagna I turned to 2 options, 1 is cappelo flat noodles,,,,expensive but they work, other opened up a new and healthier world using strips of long sliced zucchini in layers, idea is a bit like a zucchini ratatouille crossed with lasagna bit of a mixed cuisine buit it is quite popular among my customers that have to watch their carb intake. As a chef there are all kinds of new doors that open up with this disease as you learn more and have to focus on combinations and balancing nutrients more. You find a new niche in the health markets and build your reputore. 
Bread foods opened up a fun trip, my grandmother made empadnadas out of plantains and this opened up some neat tricks. Bread sticks, I was looking at this and used a combo idea of using a coconut and almond flour base, with the Brazilian cheesy bread concept of using cheese in the dough, combined with a garlic bread seasonings and butter flavored coconut oil for my wonderful cheesy bread, I made it with vegan cheese also which makes it super great, change the cheese and seasonings to change the cuisine, Best part about this bread, it is BETTER reheated later, complete opposite of real bread sticks. Trick is the starch free flour blend with the cheesy and coconut oil remelts when reheated making super soft and cheesy all over again. So they freeze well and can be reheated when ever you can find the recipe in the recipe section for now.
This disease is a road map for new culinary creations and a guide of where to focus with your life in my opinion.

As for taking your son out few things to consider, 1 first and second degree relatives have a high chance of also getting celiac. It is genetic and can develop later in life and lay dormant for years. You son might develop it one day, and you need to have him checked once a year growing up so you can catch it before too much damage is done early on.
2. In the mean time if you want to eat out but worry about getting glutened , there is a sensor out called the Nima Sensor which is a portable gluten tester. You can get one and use it when you eat out to test your food before eating it to make sure it is gluten free. So you can go and order off the gluten free menu, still be sure to talk to the manager before you order and make sure they know.
Other thoughts I often call ahead and ask if I can bring in my own safe food. Some places will allow this if you explain your situation. I talked to 2 places in my home town and bring in my own main course and dips and only order a side of roasted veggies and a drink when I meet someone to eat out. Other alternatives involve bringing meal bars but I see the lack of fun and interaction in that and tend to do the former.

Oh and check out this list


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Don't be sad.   You can most certainly eat out and enjoy travel (big and small trips).   It does require a bit of research and planning, that's all.   Everything is online nowadays, so researching is easy.

My family loves to eat out and we LOVE to travel.   Many restaurants offer gluten free options.   After my daughter was diagnosed, we traded our old favorite restaurants to a handful of new ones.   We have trusted restaurants and eat out regularly.

My daughter was diagnosed just under 4 years ago, and in that time, we have been to Europe, Peru (We did the 4 day hike to Machu Picchu and visited the Amazon river), a Cruise, Hawaiian islands, and winter snowboarding trips to Canada, Colorado, and Lake Tahoe.   We also did a 9 day long college tour road trip on the East Coast. 

This dietary restriction can  definitely be challenging at times.   But with a little research and planning , your lifestyle does not have to suffer.


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Thanks for the responses. :) Threw myself a major pity party this weekend, but am feeling better about it all. It's a hard diagnosis to swallow (har har, see, I can make jokes now), but it knowing it hasn't held you all back from doing things you love helps my outlook. Just a major lifestyle adjustment. Worst comes to worst, wine doesn't have gluten, so drinking dinner just became a legitimate dinner option. ;)  

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18 minutes ago, pearl_lake said:

drinking dinner just became a legitimate dinner option

Throw in some crackers and cheese if you are feeling fancy.

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I was sad too!  I think that's part of a normal reaction to something that will change your life so much.  But, it hasn't stopped us.  My kids are young but seem to have a travel bug. Traveling is by far the hardest part!  We went to New Jersey, DC, LA, Houston, and the mid-west this summer and I'm alive and healthy!

I usually try to stay in a hotel or VRBO with a kitchen.  We eat our breakfasts in the hotel/cabin. Lunch for me is usually light - fruit, nuts, yogurt, Kind bars. Things I can take anywhere so that I can give the kids opportunities to eat different or ethnic foods that may not be safe for me.  For dinner, we try to find restaurants that I can safely eat at. We do have to do some research and sometimes I'm heating up soup after dinner in the hotel room after my kids eat pizza. :0 

I love watching them try new foods. Fortunately, for me, I was diagnosed after I had the chance to travel a lot. I miss trying new foods, but I'm ok eating a banana and some pecans while they get to try French crepes.

When we were in DC, the kids got to eat Czech, South African, and Portuguese foods (and the South African restaurant was next door to the Little Beet - a gluten free restaurant). So, I grabbed some food next door and ate with them. (I asked the server first and they were fine with it) Then I bought a second meal to go to eat the next day.

And, I think as time goes on, there will be more gluten-free restaurants popping up and it might get even easier to travel.

Good luck!

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