Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Worrys About The Future.

goldyjlox

By goldyjlox
in Coping with Celiac Disease

Recommended Posts

goldyjlox Contributor
goldyjlox
Posted

I was just DX with Celiac in August, but knew I might have it a year in Jan 06 but was pregnant so my Doc told me to stay on my gluten diet and I did with no problems. I did not get sick to often maybe a couple times a year I would have a bad "episode" and it would last for a week or two and be gone and BC I didnt know I was Celiac I went back to eating Gluten. I have been gluten-free for maybe a month and a half and I can really notice the difference, but as I mentioned I never really got ill so I cant say for sure that I am gluten-free. I still buy potato chips and candy and eat alot of what I ate before I jsut check the labels. However I still think that I am not doing good enough, maybe I should change more of my foods and then I will at least knwo for sure. I read alot, read some good books on Celiac and have to admitt this scares me, all these other auto immune disease, and cancer is my worst fear. I am a young mother, my children (3 1/2 and 12 months) are my life, and I am so scared of not being there for them. Both my children have shown signs of Celiac so they have had bloodtests, we are waiting for the results.

I know that I should live life to the fullest and not think about the bad, gluten-free is the best way to prolong life. I think that being upset wont get me anywhere. I dont dwell on it, but it is on my mind...especially when I read things. And why is it when you tell people, they always say stuff like.." i am so sorry, or that to bad that you have that...or Celiac is so bad"?? Sure know how to hurt you.

Dis anyone else feel this way in the beginning?? And does it ever go away. I am scared for my kids also, being a child with Celiac and not being able to eat or do what other kids do would be difficult.

Thanks for listening. I am going to get ready now to go to my moms for thanksgiving dinner...I am going to bring my gluten-free meal with me...Rice, porkcop and veggies!!!! While everyone eats their turkey I will eat my own dinner. And at Christmas, I am goingto make my own gluten-free turkey!!!!!!!

Jess

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest thatchickali
Guest thatchickali
Posted

I would say you are off to a good start with your positive outlook on the holidays.

I'm struggling right now with not wanting to be with family.

Don't expect constant success, but strive for constant growth

goldyjlox Contributor
goldyjlox
Posted
  • Author

Thanks.

Ridgewalker Contributor
Ridgewalker
Posted
Don't expect constant success, but strive for constant growth

Excellent advice for everyone!

-Sarah

Di-gfree Apprentice
Di-gfree
Posted
QUOTE(thatchickali @ Oct 7 2007, 06:56 PM)

Don't expect constant success, but strive for constant growth

I agree; excellent advice. I'll have to write that down on my desk calendar.

Joss Rookie
Joss
Posted

At least you know about this now and you can take steps to be healthy. Think how awful it would be if you were unaware of the problem.

Try not to worry. It won't help anything and it will make you ill.

Mr. Pep'r Contributor
Mr. Pep'r
Posted

I am new to the Celiac World and I have to admit that up to this point all my forum surfing was centered around diesel trucks, boats, and airplanes. :huh:

Coping with this since July I feel thankful that I now know what is wrong with me. The first month was great and I noticed a big change.....but September was not so good, I think I got some bad chips or contaminated meat in my naked burrito at Qdoba.

My wife is very supportive with my new diet and she understands possible heath risks down the road. Since my dad battled with esophagical (sp) cancer and now know what I know we believe he also had Celiac. Having an Italian father pasta and bread was a nightly event. I am very diligent with what I eat. With this being said the stress I am going through with eating out is very high. I just do not trust the people preparing my food and getting that quick meal on the run is over IMHO. In my line of work.......I am on the road for about half the month. I am worried that this is going to get in the way of my career.

I am glad I know but at the same time it is not helping with the feelings I currently have. Does this make sense?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Idiote Savante Goddess Rookie
Idiote Savante Goddess
Posted

I'm not officially a Celiac yet (waiting for lab results), but I have Obstructive Sleep Apnea which means that very likely I'm going to spend the rest of my sleeping life hooked up to 6 feet of plastic hose and a CPAP machine. I went through a grief process after my diagnosis, even tho' I knew that the treatment for the apnea was working and working well. My friend Cyn was diagnosed with celiac disease about 6 months later, and she went through the same sort of grief process -- you are relieved on the one hand to know what's causing the problem, but you still get twisted up in the realization that you're no longer "normal". It defies logic. In some of the Asperger's circles I've run in, because of one of my children, I've come to terms with the idea that "normal is a setting on the clothes dryer". Just like we can't all be neurologically typical, some of us can't be food tolerance typical.

So grieve for the old, pre-diagnosis You, get professional help if necessary, and go forward with the new You --- remembering that the new You is in no way inferior to the old -- just different.

miles2go Contributor
miles2go
Posted

I remember being afraid of eating on the road or on the trail and it wasn't a nice feeling, but it does get better over time.

Things that you used to eat can easily be translated to gluten-free; there are a whole host of crackers, breads and cereals out there that weren't a few years back. I think most of us have gravitated to the Paleo diet over time, but without stoves and microwaves at hand things may look a little tricky at first glance. Everyone has different sensitivies so I'll just list things that I would eat on the road and maybe you can find something in the between.

Fresh fruits

Fresh veggies

Nut-thins crackers

Rice cakes

Nut butters

Mary's Gone crackers

Cheese, cheese, cheese

Hard-boiled eggs

Trail mix of your own making

Oberto jerky

Potato chips, Terra chips, Pirate's Booty, Cheetos (if in USA)

Anything pickled

Canned meats/fish

If you can take along a small cooler, your possibilities are endless and if you are desperate, some fast food places will accomodate you if you're willing to take the risk. I've had luck with Wendy's chili, baked potato and McDonald's fries. There are gluten free menus for fast food online if you care to look. I wouldn't recommend any of them, though, as the possibility for cc is pretty high.

Welcome to the club. It gets easier over time, really. :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.