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

Why It's Worth It


lpellegr

Recommended Posts

lpellegr Collaborator

I'm coming up on two years of gluten-free life on 9/13, and as I look back I see it was worth it. The moment the doctor suggested that it might be celiac disease, a light bulb went off as all the symptoms fell into place. I thought it was irritable bowel, but he got it right. Here's what I haven't had in two years:

No more waking up in the middle of the night to lie on the bathroom floor trying to decide which end of my GI tract to hang over the toilet, waiting for the nausea to pass.

No more cold urticaria (exposed skin would itch and get hives from being even slightly cold or wet)

No more gut cramps and aching

No more constant copious foul gas that could repulse a hyena - no more hoping I wouldn't have to expel when it was just me and one other person, no more running out into the hall to try to leave the stench somewhere other than my lab, no more trying desperately to hold it in to avoid killing the people around me

No more sitting on the toilet feeling like an elephant was trying to pass, only to have a slow pasty ribbon that took forever (I know this is gross, but I'll bet some of you know exactly what I'm talking about)

I do miss some things - I liked making bread and pizza dough, but I don't do that for the rest of the family any more to avoid contaminating my kitchen. I was hoping this big round belly would flatten out once my intestines were healed, but no luck so far. I miss the freedom of eating whatever I wanted wherever I was. But I wouldn't trade all the soft pretzels, pizza, Triscuits, Cheerios (3 bowls every day!), and homemade cookies from my grandmother's recipes for my original symptoms. I've gotten comfortable with what I can eat and can manage to figure out food to take along when I travel (I have one big honkin' fanny pack), so mostly I'm content. If you're new to this, be strong, be vigiliant and careful, be persistent, and you'll really appreciate the improvements. And use this forum a lot! It's the best!


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



Celiac.com Sponsor (A8-M):



myserenityprayer Explorer

Thank you so much for your encouragement. i am new here and have been gluten free for almost a month. So far I'm feeling pretty down in the dumps. Between my anxiety about being glutened and my stomach trying heal, I'm a nervous wreck more days than not. But surprisingly, my stomach issues have gotten a TON better in just the one month. I was hoping I would lose weight (I have struggled with being about 20-30lbs overweight and have been on a diet my entire life), but no luck yet. I think thats what is getting me depressed the most. i started off gluten free and still eating dairy but I decided to drop the dairy after getting really sick in the begining of this week. I am also trying to avoid soy products as they seem to bother my stomach also. I love going out to eat and will miss eating pizza when I'm drunk with my friends!! But I am trying to stay optimistic and hopeful. My main concern is how unhealthy I actually am. All along I thought I was eating healthy, with all of my whole wheat products and oatmeal every morning for breakfast. Clearly, that wasn't a healthy lifestyle for someone with Celiac. Now I know better. I just want to be healthy and live a healthful happy long life. I have been reading a lot on here about older Celiac's who have so many different other related medical issues and about premature death. I am really scared about that. I'm 25 and my GI doctor said after doing the biospy that I have at least 8 years of damage to my intestines, if not more. Is that a lot? A little? Will I ever be healthy? Will my stomach ever heal and be normal? Will I be normal? Whatever the heck normal is!!!

kbtoyssni Contributor

I'm coming up on my one year September 15, and I agree with everything lpellegr said. Life really is great when you're gluten-free!

HillaryT Newbie

thank you. seriously. i was diagnosed a bit over a year ago now and have been off and on gluten free. recently i have been going over the top with "cheating". i've stopped myself for almost the past week now (i've been gluten free for much longer intervals before), because i was getting these welts on my forehead. at first i was just thinking i was breaking out, but turns out they are going away now, and i realize that those were not normal pimples by any means.

anyway, i want to thank you for making me laugh so hard when i read the part of your post saying 'trying to pass an elephant but all i got was a ribbon'. i know exactly what you mean and i just sat here alone laughing. i havent been to this forum in awhile but it really does help. goodluck with keeping up your good work.

hillary

lpellegr Collaborator

Marissa, keep at it! You will heal, and with time you will have as much chance at "normal" as anyone else, and will be healthier than all those people who have it and don't know it. To keep your weight down try cutting out most of the carbs and stick to protein and fruit and vegetables - don't bother replacing bread and cereal and cookies - just avoid them. Think South Beach and Atkins. And don't give up! There are lots of us here for advice and comfort!

munchkinette Collaborator

Yes, thanks! I sometimes wonder if I really do have problems with wheat if I haven't been glutened in a while. Then I get glutened and remember that I do. <_< I've only been gluten-free for about 6 months but I just got my first "normal" ferritin test results, so I must be doing something right. (It was still really low, but in the normal range.)

I'm still having problems but it helps to hear from people who have been gluten-free for a year or two years who finally feel good.

myserenityprayer Explorer
Marissa, keep at it! You will heal, and with time you will have as much chance at "normal" as anyone else, and will be healthier than all those people who have it and don't know it. To keep your weight down try cutting out most of the carbs and stick to protein and fruit and vegetables - don't bother replacing bread and cereal and cookies - just avoid them. Think South Beach and Atkins. And don't give up! There are lots of us here for advice and comfort!

thank you. thank you. thank you. i really appreciate your support.


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,913
    • Most Online (within 30 mins)
      7,748

    Jennrhart
    Newest Member
    Jennrhart
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.