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How Long Should I Take To Recover?


MissBonnie

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MissBonnie Apprentice

i was sick to the point of being hospitalized about 2 months ago. then found out i was celiac while i was in there through an endoscopy. the abdominal pain was so intense ive been out of work for 6 months now trying to figure out what was wrong, its been hell on earth. ive been gluten free for 2 months now, but still have days where i dont get out of bed because of pain. other days i feel almost 100%. is this normal because of how sick i was or is something else wrong? i do feel 100 times better but im just wondering how long until i recover fully? maybe up to a year ive read?


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Mack the Knife Explorer

It's been over 16 months for me.... And my blood tests are still coming back positive for Coeliac disease, my ferritin and vitamin D levels are still very low and I still have good days and bad days with my guts.

But I am much better than I was. I am gradually improving - it's just taking a long time.

shadowicewolf Proficient

i feel your pain. I'm two weeks gluten free and it still hurts.

MissBonnie Apprentice

yeh the first 2 weeks i improved but still went down hill every few days :( hope you get better very soon!

also, 16 months wow. i dont know if i can cope with that haha. huess id have to huh. i think im in for the long recovery too though considering how i feel and the fact that i ended up in hospital on a drip for 2 days.

DonaldandAlanda Evans Apprentice

I also wound up in the hospital when I was sick. I was diagnosed a little over a year ago and it did take a while to feel better. I was totally convinced something else had to be going on. There are days where I still feel terrible, but overall I feel great.......I'm even in the process of training for my first marathon. Hang in there, it takes time.

MissBonnie Apprentice

thanks, its comments like yours that give me hope. oh what i would do to be healthy enough to train for a marathon! congrats on getting through yours i hope im there soon too :)

collgwg Contributor

i am also wondering the same thing

how long does it take for the villi to grow back?

does it even grow back?

and if it does can you eat gluten again ?

i have been off work for about 2 months and its looking like it will be longer i can not seem to get healthy

i have found out due to my body telling me that i am allgeric to soy this is nuts gurrrrr


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alex*iustaspira Newbie

I found out officially in feb of this year that I have celiac disease.. except despite going gluten free and being SO careful, I feel like I haven't gotten any better, even after almost 4 months. I had heard that most people feel better immediately so I'm a little worried, but this kind of makes me feel better haha. I still don't know what to do though :(

mushroom Proficient

I found out officially in feb of this year that I have celiac disease.. except despite going gluten free and being SO careful, I feel like I haven't gotten any better, even after almost 4 months. I had heard that most people feel better immediately so I'm a little worried, but this kind of makes me feel better haha. I still don't know what to do though :(

I was one of those who did not get better immediately. Some things did, others got worse, and they ended up being the result of additional food intolerances. So unfortunately we can't assume that quitting gluten is like quitting smoking and it's just a straight line improvement. Usually we also have to quit lactose because our ability to digest that has been destroyed by the damage in the small intestine. And then soy is another big intolerance, corn to a lesser extent. Nightshade plants can be a problem for many of us. Keeping a food and symptom diary helps a lot of people keep track of their reactions to different foods. So does keeping the diet simple to start with and eating whole, unprocessed foods and avoiding the gluten substitutes which are often full of soy and of grains our bodies are not used to digesting.

MissBonnie Apprentice

no celiacs can never eat gluten again..

and yes i found out i was celiac in feb and im still struggling. im not back at work. but it can take months or even a year to get better so dont stress. ive had to accept it.

cap6 Enthusiast

I was one of those who did not get better immediately. Some things did, others got worse, and they ended up being the result of additional food intolerances. So unfortunately we can't assume that quitting gluten is like quitting smoking and it's just a straight line improvement. Usually we also have to quit lactose because our ability to digest that has been destroyed by the damage in the small intestine. And then soy is another big intolerance, corn to a lesser extent. Nightshade plants can be a problem for many of us. Keeping a food and symptom diary helps a lot of people keep track of their reactions to different foods. So does keeping the diet simple to start with and eating whole, unprocessed foods and avoiding the gluten substitutes which are often full of soy and of grains our bodies are not used to digesting.

It is reassuring to hear someone say that some things got better and others were worse. I am 14 months and there are still good days and bad days. Thankfully most are good. So there is hope that they will all be mostly good?? :D

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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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