2 2
pearl_lake

Newly Diagnosed and So Sad

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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
https://www.celiac.com/gluten-free/topic/119661-gluten-free-food-alternative-list-2017/

 

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

 

  • Upvote 1

Share this post


Link to post
Share on other sites

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. ;)  

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
2 2

  • Who's Online   6 Members, 0 Anonymous, 226 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

    Jefferson Adams
    Celiac.com 07/14/2018 - If you’re looking for a simple, nutritious and exciting alternative to standard spaghetti and tomato sauce, look no further than this delicious version that blends ripe plum tomatoes, garlic, olive oil, basil, and firm sliced ricotta to deliver a tasty, memorable dish.
    Ingredients:
    12 ounces gluten-free spaghetti 5 or 6 ripe plum tomatoes ¼ cup extra virgin olive oil 2 cloves garlic, crushed ¾ teaspoons crushed red pepper ¼ cup chopped fresh basil 2 tablespoons chopped fresh parsley Kosher salt and black pepper ⅓ cup pecorino Romano cheese, grated ½ cup firm ricotta, shaved with peeler Directions:
    Finely chop all but one of the tomatoes; transfer to large bowl with olive oil and ¼ teaspoon salt.
    Cook spaghetti until al dente or desired firmness, and drain, reserving ¼ cup cooking water. 
    Meanwhile, chop remaining tomato, and place in food processor along with garlic, red pepper, and ½ teaspoon salt; puree until smooth. 
    Gently stir mixture into the bowl of chopped tomatoes.
    Add cooked spaghetti, basil and parsley to a large bowl.
    Toss in tomato mixture, adding some reserved pasta water, if needed. 
    Spoon pasta into bowls and top with Romano cheese, as desired.

    Jean Duane
    Celiac.com 07/13/2018 - I went to a friend’s home for dinner.  A few days before, she called and asked me what I could eat.  I asked her what she was planning to make, and she said she was grilling meats with side dishes.  I said, “Great.  Please just grill a piece of chicken for me with salt and pepper, and I’ll be happy to bring a side.” She said, “No need to bring a side.  I’ve got this.” When I arrived, she greeted me and said, “I spent all day cooking tonight’s dinner so you can eat it. Hey would you just check this salad dressing to see if it is OK for you?” I looked at the ingredients and it contained gluten and dairy, both of which I cannot eat.  Then I glanced around the kitchen and saw evidence of wheat cross-contamination, including buns being toasted on the grill, and gluten-containing barbeque sauce spilling on the grill where my “clean” chicken was cooking. She had other guests to tend to, and I couldn’t offer instruction or read the ingredients of everything she used in the meal. 
    At social gatherings, I’ve been challenged too by those who ask if I am really “allergic,” or just eating gluten free as a “fad.” I’ve been told many times by hosts and hostesses that, “a little won’t hurt you,” or “everything in moderation,” or “if it is made with loving hands, it is good for you to eat.”  Of course, all of this is bunk for those with food allergies or celiac disease.  A little bit may kill us, and whether made with loving hands or not, it will certainly make us sick. 
    Those of us with food allergies and/or celiac disease walk a tightrope with friends and relatives. The old rules of etiquette just don’t work anymore.  We don’t want to insult anybody, we don’t want to be isolated, and we also don’t want to risk our health by eating foods that may contain ingredients we cannot tolerate.  So what do we do? 
    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?

    Jefferson Adams
    Celiac.com 07/12/2018 - Previous research has shown that the oral administration of Bifidobacterium infantis Natren Life Start super strain (NLS-SS) reduces of gastro-intestinal symptoms in untreated celiac disease patients. The reduction of symptoms was not connected with changes in intestinal permeability or serum levels of cytokines, chemokines, or growth factors. Therefore, researchers suspected that the reduction of symptoms might be related to the modulation of innate immunity.
    To test that hypothesis, a team of researchers set out to assess the potential mechanisms of a probiotic B.infantis Natren Life Start super strain on the mucosal expression of innate immune markers in adult patients with active untreated celiac disease compared with those treated with B. infantis 6 weeks and after 1 year of gluten-free diet.
    The research team included Maria I. Pinto-Sanchez, MD, Edgardo C. Smecuol, MD, Maria P. Temprano,RD, Emilia Sugai, BSBC, Andrea Gonzalez, RD, PhD, Maria L. Moreno,MD, Xianxi Huang, MD, PhD, Premysl Bercik, MD, Ana Cabanne, MD, Horacio Vazquez, MD, Sonia Niveloni, MD, Roberto Mazure, MD, Eduardo Mauriño, MD, Elena F. Verdú, MD, PhD, and Julio C. Bai, MD. They are affiliated with the Medicine Department, Farcombe Family Digestive Health Research Institute, McMaster University, Hamilton, ON, Canada; the Small Intestinal Section, Department of Medicine and the Department of Alimentation at Dr. C. Bonorino Udaondo, Gastroenterology Hospital and Research Institute at the Universidad del Salvador in Buenos Aires, Argentina.
    The team determined the numbers of macrophages and Paneth cells, along with the expression of a-defensin-5 expression via immunohistochemistry in duodenal biopsies.
    Their results showed that a gluten-free diet lowers duodenal macrophage counts in celiac disease patients more effectively than B. infantis, while B. infantis lowers Paneth cell counts and reduces expression of a-defensin-5.
    This study documents the differential innate immune effects of treatment with B. infantis compared with 1 year of gluten-free diet. The team calls for further study to better understand the synergistic effects of gluten-free diet and B. infantis supplementation in celiac disease.
    Source:
    J Clin Gastroenterol