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

How long did it take you to feel better?


freshrainbows77

Recommended Posts

freshrainbows77 Rookie

was it weeks, months?


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



Celiac.com Sponsor (A8-M):



BuddhaBar Collaborator

Some symptoms improved after just a couple of weeks. Acid reflux and bloating was the first symptoms to disappear. Other symptoms took longer. Diarrhea and stomach pain was on and off for a few months before it finally disappeared. Some symptoms like mouth ulcers, gum inflammations and mild to moderate sleep issues has improved, but not disappeared and they might never do, but I can manage it. Neurological issues like pins and needles, tingling etc improved with vitamin D and magnesium supplements. Next week I've been gluten free for 8 months and I had partial to subtotal villous atrophy so I wasn't the sickest celiac around and I suspect I had celiac disease for 4 years prior to diagnosis.


 

Keight Enthusiast

Like everyone here, it is a personal journey. The pain and bloating were the first to subside. Migraines and hay fever then disappeared by the second week. The horrid exhaustion was lessened by the end of week three. My arthritis has decreased substantially and I noticed that by my sixth week. 

I am still having trouble with lethargy. My moods are a lot more stable and I can tell when I am reaching the end of my energy. My constipation is an ongoing problem, but I guess that is an iron supplement issue. 

My nails are only just now looking and feeling stronger. My hair is still lank. My skin is starting to take on a glow I've never had! 

It feels like FOREVER and each day is one at a time. The younger you are, the quicker you get diagnosed, the healthier you eat etc all contribute to how quickly you restore optimum health. But there ain't no magic pills, alas. 

Fenrir Community Regular

After a month I felt significantly better but it was probably 6-8 months before I was symptom free. 

SusanM777 Newbie

I was diagnosed the day before Thanksgiving 2019. I have been gluten free since then. Bloating has improved significantly, but I still have an occasional day long “gurgle” in my stomach (which is one of the symptoms that lead me to see a doctor) and I still have mucus in my stools.  

cyclinglady Grand Master
(edited)

Time.  It takes time to heal.  Time to really master the gluten free diet.  Try to avoid going out to eat (it is the only time I have ever had a gluten exposure) and focus on real non-processed foods.  Keep a food journal.  You might have other food intolerances.  Lactose intolerance is very common with celiacs.  My lactose intolerance resolved with healing, but not all.  I have issues with Xanthan Gum found in commercial gluten free products and garlic and onions!  Go figure!  

For me, it took about a year to really feel good.  Be patient!  

Edited by cyclinglady
Felix Nuts Tomcat Apprentice

For me, full recovery took a year.  Hair regrowth started after that.


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



Celiac.com Sponsor (A8-M):



MtnBear Newbie

It took 11 months before I really felt like I was thriving again.  After being sick for so long, I was also dealing with an IBS like complication I guess?  The zyrtec, bentyl medication, along with iron, b-vit, magnesium, and multivitamin and strict gluten free hand washing has me finally at a place where I almost feel normal. If I skip out on meds/vitamins, I start to feel poorly again.  But I’d say the celiac part of me is about healed.  First 3 months were a real struggle.  6 months I certainly felt better but still had issues.  For a time I took 5-HTP trying to improve sleep as I read serotonin is made in the gut.  I no longer need that now.  I really scienced what is made in the gut and if the gut is damaged,  tried to supplement accordingly as needed.  Melatonin low dose 1mg helped too.  Then around 10 mo mark I had a severe gluten reaction from a supposedly restaurant meal.  So I decided not to eat out except for a dedicated bakery and in n out.  I rebounded from that 10 mo event and really recovered faster than usual so I’d say about a year for me after undiagnosed for so long was the golden time.  So sorry for your pain I know it can feel like you won’t get better or there is something wrong but hang in there it actually does eventually get better.  Be kind to yourself.  Take time off work to rest if you can.  Socially adapting sucks too...but in time it’s also a blessing in a way.  I’m still calming down digestively but managing stress helps to keep the sensations in the gut from going beyond.  Now if I manage FODMAPs I feel 90% normal with meds supplements. Best to us all. 

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
  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.