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Fibromyalgia


w8in4dave

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w8in4dave Community Regular

I was just DX'd with fibromyalgia, Is it pretty common among Celiacs?? I wouldn't wish it on my worst enemy! hurts to pick up a tea cup!


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cyclinglady Grand Master

So sorry to hear that. My Mom has had it for 15 years. I know it is very painful and frustrating as the pain moves around and never makes any sense.

hrenee101 Newbie

I've been wondering the same thing also. I've had times where i can't even lift 2 lbs without feeling like it weighs 10 or 20 lbs. My dr referred me to a rhuemotologist who said that she did think i had fibromyalgia and she wanted to run more test to rule out other things and that's how i got diagnosed with celiac also. I always had the symptoms for both since i was little but its been a hard couple months, I got sick in September and have been dealing with it severe symptoms of both since then. 

nvsmom Community Regular

I had arthritis like symptoms, that would come and go, which sounded a lot like that.  I would get fatigues, flusih, and then it would hit for a few weeks to months.  It would get pretty severe to the point where scissors and pens were pretty hard to use and there was very little strength in the affected joints.  It got better gluten-free but it was my symptoms that took the longest to improves.  After two years gluten-free it is mostly gone. There was very little improvement in the first year gluten-free, I'm afraid... But that could be just me

 

Best wishes

w8in4dave Community Regular

Oh my I never felt this kind of pain before. I have been gluten-free for over a year. This just started right about two weeks before Thanksgiving I was driving home from my step daughters. It was icy and snowing out and when I went over a high level bridge I was shaking un controllably... It reminded me of when I leave my dog alone, He has separation anxiety, so yea I was shaking. Ok so I get home and things are good , But doesn't take long a few days and Hubbs and I are headed up north. I woke up with such bad pain, I blamed it for sleeping wrong, but later figured it was something eles going on. I had a bad cold blamed it on that. But still It hurts so bad. Gets better at night. Kinda ,It is crazy! It does move around! I have always prided my self for not having head aches and bam! Started having them. I do have another auto immune disease So once you have one your likely to have another.So I hear anyway, I think Fibro is an auto immune. Cannot swear to it. Is it common for Celiacs?? Just curious about that. I guess It doesn't matter Dr. Says it's my problem. I won't take all the stuff they have out there for it. I will suffer thru. Hopefully the weather is good and I can deal. It is what it is! Just like Celiac and everything eles! Deal with it!

cyclinglady Grand Master

Gentle exercise is helpful for those with fibromyalgia. It can help with depression too -- because it is really depressing to have it! My mom's weirdest symptom is feeling cold inside and piling on the blankets does not help. Happens at the same time of day (around noon). She gets most of her work done first thing in the morning. Naps help as well.

I do not recommend Lyrica. She took that med for two months and gained 30 pounds! That is one of the side effects. Another is suicide. She figured if she gained that much weight that fast, she might end up killing herself. She stopped that medication. She mostly uses over-the-counter pain meds and heating pads or the kind you heat in the microwave.

ravenwoodglass Mentor

I don't know if it will help you but my fibro symptoms seemed to be linked to soy. After I dropped soy the fibro issues resolved.


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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. 
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    • 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
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