• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Will I Ever Feel Better?
0

9 posts in this topic

Hi everyone - I was diagnosed with celiac on Thursday of this week. I had the endoscopy on Wednesday and my doc said it was positve just by seeing my gut. The biopsy came through the next day confirming it.

 

While I understand the diagnosis and will gladly embrace the gluten-free lifestyle (and don't expect overnight cures), I doubt I will every feel normal again. I was misdiagnosed 20 years ago and while my stomach was ok for a while, for the last couple of years, I am sick almost every day and in the bathroom it feels like constantly. I am chronically tired and can't seem to get enough sleep. Has anyone felt this way that can tell me it will get better? My doctor promises he will make this better but I can't imagine a day without worring about running to the bathroom!

 

Thanks in advance. I'm glad this forum is here. It was wonderful to find!

 

Kim

Edited by WisconsinKim
0

Share this post


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


It may take a few months, or a few years, but you will realize, one day, that you forgot to check the location of the bathroom at the new grocery. And then you realize you didn't need it!

FYI - last names not required in forum posts. You can edit yours out if you would like. Edit works for about 2 days after a post

0

Share this post


Link to post
Share on other sites

I had 30 years of undiagnosed celiac disease symptoms, at least.  The worst of my symptoms were fogginess and fatigue.  I have been gluten free for about 18 months.  In the beginning, I feared that I felt like I would die, or never recover.  But, I am better.  Therefore, I believe there is hope for you.

 

I drove through much of you beautiful state on 94 yesterday!  I hope you will soon be able to enjoy it.

 

Get Well  ***

D

0

Share this post


Link to post
Share on other sites

If your experience is anything like mine, you'll start to see/feel noticeable differences in your body in the first few days of going gluten free. Despite being in the midst of withdrawal, I was ecstatic! And I had so much hope for a future with fewer problems! 

Seriously, little things throughout my entire body that I didn't even realize were problems and definitely hadn't related to gluten were suddenly gone along with another list of things that had been cropping up here and there for decades! More than 20 years of my adult life going to doctors for various aches and pains, all of them telling me that there was nothing wrong with me, and now I had finally found a cause for not some, but all of them!!! I was positively giddy.

There is no way I'd be the least bit tempted to return to gluten. And though there are definitely times when I feel deprived or disappointed when I can't partake in something, the thought is fleeting. Instead, I've delved into my own kitchen and have probably tripled the number of dishes that I can make that taste better than those I've been served in even the best restaurants. 

That said, some of my problems got way worse because I didn't realize that I also had vitamin deficiencies which took a while longer to get diagnosed and am just now starting to get control of.

I slept a lot more than normal in the first week of going gluten free, but I figured that was partly due to recovering from the extreme insomnia that gluten had been causing for several months prior. But that only lasted a week.

A couple months later, I started looking into deficiencies when I had a few scary days where I simply couldn't stay awake for more than an hour at a time despite getting a full night's sleep the night before. Popping a good gluten-free multivitamin seemed to help within minutes and some online research confirmed that there was a link between vitamin deficiencies and fatigue.

A doctors appointment confirmed vitamin D, B12, and iron deficiencies, some of the more common deficiencies for those with gluten allergies. They have been a lot tougher to fix than I had hoped and months later I'm still struggling with them and the idea that I need to take any sort of pill, even if it is an over-the-counter supplement. 

If your doctor didn't already check your vitamin/mineral/hormone levels, I'd ask for it to be done to get ahead of any problems. And in the meantime, track down a gluten-free multivitamin to add to your arsenal.

Oh, and this forum has been a godsend! If it weren't here as a source of information I'd probably still be getting accidental glutenings on a regular basis. Take the contamination and hidden sources issues seriously and you should do just fine.

0

Share this post


Link to post
Share on other sites

Hang in there. It can take quite a while to get better, especially in those who have been living with celiac disease undiagnosed for a few decades. i noticed an improvement in stomach bloat and pain within days but then I hit a withdrawal and my energy levels and mood took a nose dive for about two weeks - I still remember that headache. I then felt quite improved for three months until i went through some sort of autoimmune attack for a few months. I am now gluten-free for one year, and have my thyroid problems properly treated, and I can honestly say that i feel the best I have in about 5 years or so.

 

Some symptoms take a long time to clear up. My fatigue took almost a year (I think it was partially thyroid related too) and my bathroom habits took about 8 months to change. If your fatigue hasn't improved in a few more months (by Halloween say), you might consider looking into other causes of fatigue like thyroiditis.

 

I agree that vitamins are helpful to energy. Potassium, calcium, ferritin, iron, folate, D, B12 and zinc are often low.

 

Best wishes.

0

Share this post


Link to post
Share on other sites
Ads by Google:


There are quite a few people on here who were very sick on diagnosis, myself included.  It can take some time, but we got better.  It was like I was aging in reverse for a long while.  I couldn't believe all the things that got better.  I had no idea that all these things could be caused by celiac disease.  Enjoy it, and be patient with yourself as you learn the diet.

0

Share this post


Link to post
Share on other sites

Thanks everyone. I still have daily stomach issues and I am just frustrated. I guess my stomach is better in that before diagnosis I was constantly gassy and bloated and that's better. But I'm still going several times a day.

 

I expected the fatigue to last. My doc said that would be one of the last symptoms to go away. I guess I need to just relax and let my body heal. I am thankful for the support of this group, however!

 

k

0

Share this post


Link to post
Share on other sites

hi, kim - welcome to the best club you never wanted to join   :huh:

 

many of us were misdiagnosed for a very long time but take heart!  it may take awhile, but little by little you will start to feel better.  pretty soon, you will be taking your life back <sounds corny, but it's true :)  my doctor could also see the damage when they did my endoscopy - it doesn't happen overnight, that is years and years of untreated celiac - so, if you are like me, it will take a while to heal.  i am still noticing improvements and i am 3 years gluten free.  did you read the newbie 101 thread yet?  it has a ton of useful info and tips to help you along.  ask questions if you have them - good luck!  :)

0

Share this post


Link to post
Share on other sites

Hi everyone - I was diagnosed with celiac on Thursday of this week. I had the endoscopy on Wednesday and my doc said it was positve just by seeing my gut. The biopsy came through the next day confirming it.

 

While I understand the diagnosis and will gladly embrace the gluten-free lifestyle (and don't expect overnight cures), I doubt I will every feel normal again. I was misdiagnosed 20 years ago and while my stomach was ok for a while, for the last couple of years, I am sick almost every day and in the bathroom it feels like constantly. I am chronically tired and can't seem to get enough sleep. Has anyone felt this way that can tell me it will get better? My doctor promises he will make this better but I can't imagine a day without worring about running to the bathroom!

 

Thanks in advance. I'm glad this forum is here. It was wonderful to find!

 

Kim

Dear Kim

 

Yes!  I promise.  And it will be miraculous.  You will have to be very diligent and disciplined and probably within six weeks (yes, maybe that soon) to 3 months. I was misdiagnosed from the time I was an infant (60 years ago).  You already know the symptoms.  I had them all including an auto-immune, collagen-vascular disease that was misdiagnosed (of course) as rhumatoid arthritis. This is now in remission.  It was secondary to the celiac which all but destroyed my gut.  But after twenty years of being gluten-free I can attest to the cure.  Drink a lot of water.  Also aloe vera water is good for healing the gut. Try a little of that a day.

 

It is MUCH easier these days to be gluten-free.  The products are plentiful.  I love the Tinkyada brown rice pasta.  Udi's breads are great.

 

Please keep in touch.  I am anxious to hear how quickly your recovery will be.

0

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
0

  • Forum Statistics

    • Total Topics
      106,802
    • Total Posts
      932,550
  • Member Statistics

    • Total Members
      64,291
    • Most Online
      3,093

    Newest Member
    1Newtothis
    Joined
  • Popular Now

  • Topics

  • Posts

    • I would suggest a certified gluten free soy sauce, just to be safe.  Test that and if you react, you'll be able to rule out a gluten reaction from La Choy.  
    • I second cycling lady here, you should not go gluten free unless your doctor confirms you have celiac disease via the blood test and a biopsy. You need to be eating gluten for the testing to be accurate so a 30 day trial based on the gene is a REALLY bad idea, getting back on gluten for the testing is a nightmare once out of your system. Also going gluten free, what are you eating? If your eating just a bunch of gluten-free foods that are processed like the pre made breads, foods etc. your on the wrong path. Those are normally non enriched and more like junk food/comfort food. You need to eat a whole foods diet, of various greens, meats, nuts, seeds, (fruit if you can have it and sweet potatoes). etc. Doing this will boost your healing and you and introduce some of those processed foods later on sometimes. If you have celiac disease then your intestines are probably damaged and you will need to supplement some nutrients, we all have common ones like magnesium, iron, b-vitamins, folate, potassium, D etc. and you should talk to a good doctor about what your missing. The whole out of it things sounds like b-vitamins to me. Another point is going gluten free, you have to be careful for CC if your a celiac, after removing gluten re exposure to gluten makes your symptoms MUCH worse, and the tend to change and evolve in addition. Be sure to check the Newbie 101, your pretty much have to replace most of your cookware, condiments, etc. https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/  
    • Do you still consume gluten and/or dairy? If so, I highly recommend that you eliminate both entirely. That includes anything with the ingredients; whey powder, casein, "lactose free" can be misleading as well. I also recommend taking a good probiotic regularly.  http://mentalhealthdaily.com/2016/03/01/10-best-probiotics-for-depression-anxiety-gut-brain-axis-modification/  I use Garden of Life brand for Mood. I buy it in the refrigerated section at Whole Foods. I also recommend double doses of B vitamin for a stint. However, you should have a full work up done by a neurologist, if you haven't already. Assuming everything comes  back negative then I highly recommend trying these few things.  I hope you can find answers and start feeling healthy again.
    • I suggest researching Mast Cell Activation Syndrome or EOE.   http://www.mayoclinic.org/diseases-conditions/eosinophilic-esophagitis/basics/definition/con-20035681  Also, Benadryl crosses the blood brain barrier and there have been long-term complications.  Talk to your doctor about using  another antihistamine.  If your reactions have been anaphylactic, you should have an epi pen.  I hope you feel better soon!  
    • Welcome!   Yikes, first I would suggest that you consider a new doctor.  Your doctor gave you some pretty bad advice biased on your posting.   The celiac gene is common.  Some 30% or more of the population carries the genes that could develop into celiac disease.  Are you sure it was not an antibodies test?  Telling you to go gluten free for a 30 day trial is another huge error.  Often they takes months to years for a celiac to recover.  A celiac is diagosed by blood tests and small intestinal biopsies obtained via an endoscopy.  There are times when an endoscopy is skipped because if financial reasons, too ill or long wait times.   Learn more at the University of Chicago's celiac website which is very informative and well-recognized.   http://www.cureceliacdisease.org/screening/  
  • Upcoming Events