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How long to heal?


Makky

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Makky Apprentice

I am starting this new chain because I know a lot of people haven’t been on this forum in years, but for those who are still here and fully recovered, how long did it take to heal your leaky gut/intestinal permeability? 
I do feel much better than I felt two months ago since being diagnosed but  I am still just trying to gauge the healing process timeline and curious about any tips anyone has to aide the course. Thank you!!


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Scott Adams Grand Master

Welcome to the forum! It can take up to two years for your gut to fully heal:

 Most people, like myself, begin to feel better very soon after starting a 100% gluten-free diet, and their health continues to improve for months afterwards.

Makky Apprentice
1 hour ago, Scott Adams said:

Welcome to the forum! It can take up to two years for your gut to fully heal:

 Most people, like myself, begin to feel better very soon after starting a 100% gluten-free diet, and their health continues to improve for months afterwards.

Thank you so much Scott, I think I have a long road ahead of me, trying to take things slowly right now but definitely not feeling like my Normal self yet 😓

Scott Adams Grand Master

Not everyone fully recovers with the gluten-free diet alone, and this article covers additional things that may be helpful in case you are in that group:

 

ButWhatCanIEat Explorer

I'm 8 months post diagnosis.

In the first month I had an initial HUGE increase of energy and large abatement of symptoms, which has been followed by an additional 7 months of ups and downs of mild symptoms coming and going (sometimes because I accidentally consumed gluten in a product that I didn't read carefully enough). My vitamin deficiencies are still slowly improving too. I feel like my mental acuity is returning recently and I am much more alert and interested in doing things and learning things than I have been since, idk, my 20s. It feels like my brain got young again, which is amazing. So I'm not "better" yet but certainly there's been a lot of improvement by this point already, I look forward to seeing how much more there will be.

Makky Apprentice
6 hours ago, ButWhatCanIEat said:

I'm 8 months post diagnosis.

In the first month I had an initial HUGE increase of energy and large abatement of symptoms, which has been followed by an additional 7 months of ups and downs of mild symptoms coming and going (sometimes because I accidentally consumed gluten in a product that I didn't read carefully enough). My vitamin deficiencies are still slowly improving too. I feel like my mental acuity is returning recently and I am much more alert and interested in doing things and learning things than I have been since, idk, my 20s. It feels like my brain got young again, which is amazing. So I'm not "better" yet but certainly there's been a lot of improvement by this point already, I look forward to seeing how much more there will be.

That is wonderful to hear, I’m so glad you’re doing better and that is very encouraging for others who are just starting out the journey! I appreciate you sharing that because that’s exactly the type of things I was curious about. & It is so hard to not get “glutened”! Trying to be extra careful from here on out and taking lots of vitamins. It’s terrible to get a diagnosis like this when we are already going through such a stressful time with this pandemic, I wish you the best on your road to full recovery :)

  • 3 weeks later...
Phosis Explorer

I think it's misleading to say "it can take up to two years to heal". It can certainly take longer than that for some, especially if they are continuing to eat processed foods etc, as that can confuse things a lot. 

It's more accurate to say the majority of people sticking to gluten-free will experience healing by the two year mark. But many still will not, and it does not mean they have refractory Celiac. 


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  • 1 month later...
fllstuart77 Explorer

celiacs never truly heal

Scott Adams Grand Master

I believe that this is a broad generalization, and do believe that many celiacs can make a full recovery, but not all of them. There are more complicated cases, and those of us who have additional food intolerance and allergy issues with can make recovery much harder.

fllstuart77 Explorer

As soon as you eat gluten then you have damage again...  and there's no way to go through your entre life gluten free..  so how can you actually ever heal or stay healed?  Its just a cycle of healing and damage and healing forever

 

Scott Adams Grand Master

There is a way to stay gluten-free, and/or take AN-PEP enzymes like GliadinX makes in situations where there may be cross contamination (disclosure, they are a sponsor here). This has been my approach, and others are also finding this to be a good approach. There are many people on this board who do stay gluten-free, don't eat out, and bring their own food or go shopping at markets when they travel, so the do stay gluten-free for life. Personally I think dining out and travelling are too important for me to give up, thus my imperfect solution.

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    • 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.
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