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How Long Does It Take To Heal?


GluFREEthatsME

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GluFREEthatsME Newbie

Hey all,

I've been gluten free for a month now. I've been overweight for quite some time and have heard that people with gluten intolerance are usually underweight. That's a little confusing for me, but I have lost 12 pounds in a month. I'm eating very healthily - 80% organic fruits and veggies, gluten free, dairy free, soy free, low salt, sugar free (except some cane, honey, real maple syrup as sweeteners), no crappy processed foods.

Anyway - I had been suffering for quite some time (stomach pain, digestive problems, acid reflux, etc.) All of that has just about melted away, but wondering how long it REALLY takes to heal. I was diagnosed with CFS/FM in 2003, and suffer a LOT of pain, daily. I'm hoping that this may eventually dissipate, but as yet, I don't feel any better in that department.

Just wondering if there are others like me out there who have actually reversed FM pain through gluten (and other) free diets.

Glad to have found this group and thanks for listening :)


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Wolicki Enthusiast

Time to heal is different for everyone. I, too, had chronic pain. Pleurisy, joint pain, muscle pain, daily for 10 years. Most of the pains went away within a month. I still have occasional joint pain, but it seems to be related to specific foods. I have been gluten free for 7 months. I still have a ways to go with healing intesinal damage, but it is so much better than it was. As long as you stick to the diet, you will continue to improve. My rheumatologist is amazed at the difference. My pain was so bad I was taking prednisone at least 3 times a month! Haven't had any steroids at all since going gluten free.

luvs2eat Collaborator

I don't have FM pain, or any pain really. My symptoms were/are all digestive. I can tell you that it took the better part of a YEAR (as I realized I was making a lot of mistakes) before I decided my bowels had returned to "normal."

sandsurfgirl Collaborator

Unfortunately for some of us celiac causes us to gain weight instead of lose it. Your body is malnourished so it slows your metabolism and hangs on for dear life to every single calorie you eat. Also it will raise your appetite so you take in too many calories to compensate for the lack of nutrition.

It's a myth that cost me 7 years of my life in illness and 2 horrific pregnancies because a GI doc told me my weight gain assured him that there was no way I could have celiac disease.

GluFREEthatsME Newbie

Thanks for your responses! OMG - I believe I may have had this all of my life! Unfortunately, I guess it CAN go undetected, depending on the severity of the symptoms. Honestly, this is the first time I am eating food that I don't get a stomach ache from. How did I get used to those stomach aches to the point where I thought they were normal after eating. If I were nauseous, I might have suspecting something, but a burning sensation and some discomfort was just annoying.

I didn't know the difference, until I cut out ALL gluten. Wow - now I know what it feels like to eat and not have that discomfort. Man - I feel pretty stupid, but I wonder how many people go through this and not realize.

Thanks Sandsurfgirl - I'm glad to hear that the weight thing is not necessarily a given. You had horrific pregnancies and I couldn't get pregnant at ALL, and had an early menopause at 41. I recently read that Celiac can cause infertility and early menopause. NOW YA TELL ME! I'm kinda angry that doctors still don't realize the kind of damage this can cause and make sure their patients are thoroughly tested for this if there are signs of any digestive problems!

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    • trents
      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Here are some articles on cross-reactivity and celiac disease:      
    • knitty kitty
      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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