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

I Wish I Knew Then What I Know Now

jasonD2

By jasonD2
in Coping with Celiac Disease

Recommended Posts

jasonD2 Experienced
jasonD2
Posted

I can't believe how ignorant i was years ago before i developed all my problems. Seriously, I truly believe everything that happened to me couldve been prevented if i just took the right steps. instead of allowing my body to fully recover from a Giardia infection i jumped right back in to eating dairy, wheat, alcohol etc and my body couldnt handle it, so it collapsed. if i new about antiparasitic formulas i wouldve taken them on my river trip and wouldve never gotten ill. i beat myself up over this on a daily basis and have been for 7 years. i have fantasies of going back in time and writing a letter to myself with all of this information. i just cant get past it and after all this time still have difficult accepting my condition and just cant move forward..i feel it everywhere I go and every situation im in so i get no satisfaction out of life anymore. Only time i briefly escape is when i get some alcohol in me, but i shouldnt even be drinking

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

Celiac.com Sponsor (A8-M):


curlyfries Contributor
curlyfries
Posted

Looks like you're spending an awful lot of energy on shoulda, woulda, couldas. Energy that would be put to better use trying to live your life to the fullest. Because tomorrow you will waste your time regretting what you didn't do today.

I know it's difficult when you have multiple intolerances and still don't have all your issues figured out. And it's OK to get down about it from time to time. We've all been there. But then you pull yourself up, brush yourself off, and keep trying. You know you shouldn't be drinking, but you do it anyway. You know that's not going to make you feel better in the long run. If you want your life to get better, you've got to act like it........DO something about it besides pout. Sorry that sounds harsh but if you keep this up, years from now you will regret that you didn't try harder today.

Quit beating yourself up and fight for yourself...not against yourself. I have to wonder if it's more than your health that has you down.

What would you do if you got a letter from yourself from the future, telling you to get off your arse and start living and quit ruining the future that you could have???

jasonD2 Experienced
jasonD2
Posted
  • Author

i know you're right- and to be honest there are other things that have me down in the dumps. main thing is my social life...can't find a good woman and my dietary restrictions have also turned me into a bit of a recluse

curlyfries Contributor
curlyfries
Posted

Sounds like you don't like yourself much, so you can't expect anyone else to be attracted to you. First order of business is to accept yourself as you are and figure out how you're going to work around your food issues. Try to find activities you can get involved in that don't revolve around food. There's more to you and more to life than what you eat......or don't eat :P

Crystal Brown Rookie
Crystal Brown
Posted

Curlyfries, is definitely right.. The pity parties are okay, occasionally, but you have to know when to pull yourself up and out. I went through the recluse stage too - it is friggin hard to socialize!! You know what though? You just have to figure out what will work best for you in a social setting. I know, it's the whole - well I don't wanna have to put that much thought into it and I don't wanna.... The question you have to ask yourself is, how long do you wanna be a recluse? Unless the UPS sends your soul mate to your house, it looks like you're gonna have to get out and about :)

May I ask what your age range is?

Also, what are some of your core concerns about the social scene?

You will have days where you're going to feel like a complete poop, but you have to know that underneath you're solid gold and worth the fight.

one more mile Contributor
one more mile
Posted

I need pity parties sometimes also, today get down and roll in the mud for a while If I really need to, but only for a day and a half. Then I take a long shower and get on with life.

I needed to get as sick as I got to be willing to commit to healing my self. Many of the people that saw me suffer for years are now looking at their diet also. It feels good that my suffering is helping others.

Could you be an Alcoholic? Only you can answer that but a desire to drink when it harms you is a symptom.

If you have questions email me at Seekerk@msn.com.

One more mile

PS my 88 year old grandmother is now working on cutting back gluten. She now realizes that it is the two pieces of toast in the morning that give her gass.

flourgirl Apprentice
flourgirl
Posted

I have to put my 2 cents in too. You mention wanting to find a "good woman". You will not find her in the bottle. You will not find the life you desire there either. That little bottle will suck your very life and soul out of you, and then rip your body to shreds. A woman who is just the kind who could help you to build that fulfilling, wonderful life will not be the kind to compete with that bottle, or stand by watching you be destroyed. The choice is yours. Harsh reality...but I know what I'm talking about. It's time for your wake up call....and it can only come from you. Make your choices and go for it! I wish you luck and a happy journey

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

Celiac.com Sponsor (A8-M):


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.