Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

What's It Like 5 Years Out? Inspire And Encourage Us!


Chakra2

Recommended Posts

Chakra2 Contributor

I've been gluten-free for 5 months while working with doctors on my

health and my 2 year old son's health. We're also dairy-free, soy-free

and try to avoid corn for the most part. The results have been amazing!!

Mentally, the clouds have parted for me and physically my son and I

seem to be doing way better.

BUT . . . Lately I've been feeling like even this 5 months seems like

forever. And the diet seems hard again. And my relatives don't

believe in celiac disease, etc. I've wondered if finally feeling better

is kind of playing tricks on my mind -- it's even hard for me to believe

that food can make this big a difference on our health.

So I would love to hear from folks who have more perspective on this.

How long did it take you to stop fighting the facts? When did the diet

become 2nd nature to you? Do you feel even better 5 (or however many)

years out than you did that first year?

Any inspiration and encouragement welcome!

Chakra2


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



Celiac.com Sponsor (A8-M):



Mari Contributor

I have been gluten-free and cow dairy free for more than 4 years. I felt better after a few days gluten-free but the tests were not conclusive so I read about celiac disease online, have a brother with Type 1 Diabetes so immediately ordered the DNA marker test. I had inherited the predisposition from both parents (DQ2/DQ2) and that firmly convinced me to stay strictly gluten-free for life. My recovery was very slow, a 2 step forward, one step back pattern but I never once thought of eating gluten foods again. My whole body had suffered damage from years of eating gluten so I had a lot of healing to do. My digestive system had an unbalanced intestinal flora - toxin producing bacteria, parasites, gall stones and low bile pool, constipation, frequent virus infections, dental problems and infections, sores and white plaque in my mouth, pancreatic insufficiency, lizard skin and other skin problems, mental confusion and anxiety/depression. I had learned to do herbal/alternative programs about 25 years before which had kept me functioning and able to work and I continued with those programs and found they worked much better since I was not reacting to gluten. Slowly my system began to recover as I killed off parasites and step-by step coped with the intestinal invaders, the last problem which is almost gone was an intestinal yeast overgrowth for which I used Candida herbs and Neem. About 2 years ago I began using the Specific Carbohydrate Diet with goat's milk yogurt and often mention in my posts how much it helped my intestinal problems. Since controling the sneaky Candida I have more energy and am doing more outside work. I finally feel that I am healing and am looking forward to more years of much better health - after all I'm only 73.

lizard00 Enthusiast

Well, I'm only half way to the 5 year mark. I've been gluten-free for 2 1/2 years now, and I can tell you that without a doubt, it got much easier for me. The first 6 months were definitely the hardest, especially because there is just so much information out there and so much in your life that has to be changed.

But as I started to feel better, it got easier. I have been off of soy for probably a little over a year now, maybe longer. And that was a lot easier to cut out (mentally, not necessarily the actual cutting out, since it's in EVERYTHING!)

In a way, you have to sort of go through the grieving process. For a bit it's all new and ok, and then reality sinks in and you realize this is for life and it's hard. The important thing to remember is just to get through the day and remember what your life was like before you went gluten-free and how it has changed your life for the better. A critical point for me was when I no longer needed to nap during the day. For about a year I napped every afternoon, and I was getting more and more fatigued by the day. After about 6 months on the diet, one day I realized I didn't take a nap, and I didn't feel like I needed one either. Huge day for me!!!! Hang in there, it gets easier!! :)

Gemini Experienced

I've been gluten-free for 5 months while working with doctors on my

health and my 2 year old son's health. We're also dairy-free, soy-free

and try to avoid corn for the most part. The results have been amazing!!

Mentally, the clouds have parted for me and physically my son and I

seem to be doing way better.

BUT . . . Lately I've been feeling like even this 5 months seems like

forever. And the diet seems hard again. And my relatives don't

believe in celiac disease, etc. I've wondered if finally feeling better

is kind of playing tricks on my mind -- it's even hard for me to believe

that food can make this big a difference on our health.

So I would love to hear from folks who have more perspective on this.

How long did it take you to stop fighting the facts? When did the diet

become 2nd nature to you? Do you feel even better 5 (or however many)

years out than you did that first year?

Any inspiration and encouragement welcome!

Chakra2

I just celebrated my 5th year anniversary gluten-free and I know no other life! ;) It has become so second nature to me that I cannot remember living with wheat. To be honest, I never had any trouble with the diet at all and embraced it wholeheartedly from Day 1 but I was extremely ill, had gone 20 years with horrible symptoms before it was figured out and diagnosed and I was very close to being hospitalized with a feeding tube installed so my perspective may be different from those who weren't as ill.

I hate hospitals and doctors and would do anything to avoid that fate.

It really, really does become easier and easier, especially if you have a good attitude most of the time and don't fight it and feel sorry for yourself too much. There are so many good products out there that are as good as their wheat counterparts and I am very grateful for that.

It took about 31/2 years for me to slowly rid myself of all the pesky symptoms that go along with Celiac. The really bad ones, like all the stomach discomfort and weight loss, started to dissipate after only 3 days gluten-free but the less obvious ones took longer. I had a lot of damage and was 46 at time of diagnosis so it did take some time. There were symptoms I didn't even know were related and when they went away, I was amazed. Things like joint and bone pain and my problems with Reynaud's Syndrome all went away slowly and I just accepted it as part of the healing process. This after having had x-rays and other tests that came back normal.

I am now 51 years old and truthfully, feel better than I did at 30. My thyroid is under control, I sleep better, my appetite is good and I don't have any of the age related problems I see in other people of my age. They are complaining of joint pain and stomach problems and I don't have any of that anymore and that's about as good as it gets for me! Hang in there and you will get there yourself, I am certain. :D

The only thing I would wish for now is a cure for hot flashes! :P

psawyer Proficient

The tenth anniversary of my diagnosis is two weeks from today. I feel so much better today than I did then. Symptoms took time to go away, but I had had severe issues for about five years, and my villi were seriously damaged. You do go through a grieving process, but once I got past that I never looked back.

Beer was a hard thing to give up, and I was several years into my gluten-free journey before there was any gluten-free beer at all, much less where I live. Until recently, there was only one gluten-free beer available in Ontario, but there are at least three now.

I can't really pin down when it became second nature, but it was less than a year.

jerseyangel Proficient

Just passed my 5 year anniversary on June 2. I had no idea what I was doing at first. Doctor told me to "begin gluten-free, lactose free diet and come back in 2 months." I had to ask for info on the diet, and I was given a copy of an ancient, typed list of allowed and not allowed foods. Not very much help.

It was rough the first few months, while I was getting the diet down, and then I began to get symptoms all over again--turned out I had some additional intolerances. I found this board in September, which was a godsend.

Once the other intolerances were identified and eliminated, things got much better physically--the emotional aspect took more like 18 months. I would say well within a year, the diet became second nature.

One thing I can say for sure--the difference between 2005 and now for me is nothing short of amazing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,160
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...