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How long did it take you to feel better?

freshrainbows77
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freshrainbows77 Rookie
freshrainbows77
Posted

was it weeks, months?

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BuddhaBar Collaborator
BuddhaBar
Posted

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
Keight
Posted

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
Fenrir
Posted

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

SusanM777 Newbie
SusanM777
Posted

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
cyclinglady
Posted
(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
Felix Nuts Tomcat
Posted

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

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MtnBear Newbie
MtnBear
Posted

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. 

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  • Recent Activity

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      - Jason Hi replied to Jason Hi's topic in Doctors
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      "Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies...
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      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would...
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      Need Advice on Doctors

      Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what...
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    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      "Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies should remain in your system and you don't have to eat gluten (i.e., blood test last year). Hence my posting on finding a good doctor.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would tell you that you must avoid gluten and given the test results you already have, the logical conclusion is NCGS. As I said, an NCGS diagnosis is arrived at by first ruling out celiac disease, which seems to have been done. Then you could go back to that doctor with the other evidence component (improvement of symptoms with gluten-free eating) and ask if he/she would now be willing to declare an official dx of NCGS and give you a note. Or, you could book an appointment with another doctor who could look at your test results online, together with symptom improvement after going gluten-free, who might be more cooperative. I would seek out a younger practitioner as they are more likely to not be operating on outdated info about gluten disorders. By the way, NCGS is about 10x more common than celiac disease. 
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      Thank you for clarifying the terminology. Based on what my doctor told me, I understand that I do not have celiac disease, but that I’m “likely gluten sensitive.” From what I’ve researched, that places me in the category of Non-Celiac Gluten Sensitivity (NCGS)—as you mentioned, the key difference is that with NCGS there are no damaged villi and no positive celiac-specific antibodies. Either way, my treatment is the same: follow a gluten-free diet to avoid feeling sick. My understanding is that there are three main issues related to gluten: 1. Celiac Disease (produces specific antibodies and damages the small bowel) 2. Wheat Allergy (an immune response to wheat proteins) 3. Non-Celiac Gluten Sensitivity (negative celiac tests but still symptomatic from gluten) Regarding tax breaks or workplace accommodations, I came across a statement from celiac.org (https://celiac.org/gluten-free-living/federal-benefits/tax-deductions/) indicating that having any formal diagnosis—celiac disease or non-celiac gluten sensitivity—plus a prescription from a physician is typically required to qualify. In my case, my goal is to avoid feeling sick and secure documentation for both work and potential tax benefits. If I do pursue further tests or get more detailed lab results, I’ll share those here to confirm whether the doctor is suggesting celiac disease or truly NCGS. But as of now, the doctor’s comments lead me to believe I fall under NCGS.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what you mean when you say your doctor told you that your are likely "gluten sensitive". The actual medical terms for these two gluten disorders are: "celiac disease" and "Non Celiac Gluten Sensitivity" or NCGS for short. The test you had run by the GI doc are intended to check for celiac disease. There is no test for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out.  Because these terms are used by many people interchangeably I'm not sure that your doctor, after running the tests, was intending for you to understand that he believes you have celiac disease or NCGS. So, to clear up the confusion, can you post the results of your blood test, not just the test scores but the reference ranges used by the lab analyzing the blood sample to determine negative/positive or normal/high? The difference between celiac disease and NCGS is that celiac disease damages the lining of the small bowel over time whereas NCGS does not. However, they may share many of the same gastro intestinal symptoms. Both need to be addressed with a gluten free diet but the tax breaks and work place accommodations you speak of would likely only accrue from an official celiac disease diagnosis. So, can you post the blood test results along with the reference ranges and also the endoscopy report. We can help you decipher whether or not the doc was suggesting you may have celiac disease or NCGS if you will do that.
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      I recently had an upper gastrointestinal endoscopy and blood tests, and my gastroenterologist concluded that I’m “likely gluten sensitive.” However, they wouldn’t provide a prescription or a formal doctor’s note—just a test result saying I’m likely gluten sensitive, along with the advice to avoid gluten. I’m frustrated because I know that proper documentation could help with tax breaks for gluten-free foods and even workplace accommodations. I’m also not willing to go through another gluten challenge—it was rough! Does anyone have recommendations for a doctor (U.S. based preferably Texas) who is more understanding and willing to provide the necessary documentation for gluten sensitivity? I’d really appreciate any suggestions!
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