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Desperate For Advice

CarolynV

By CarolynV
in Coping with Celiac Disease

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CarolynV Newbie
CarolynV
Posted

Hi Everyone,

I'm newly diagnosed and have some questions. The main symptoms I have are neurological. Mostly what I experience is immense fatigue to the point where I need to be in bed most of the day. I have burning sensations and just muscle pain when I exert myself. My tongue even hurts at times. My doctor says that I am experiencing this because of the malabsorption. Do any of you here experience this sort of pain? Do you think that there is something else going on? I'm on a really strict diet that is obviously gluten free but also surgar, dairy and casin free. It's basically a diet for leaky gut. If this is just celiac disease, how long before I start getting better? My dr. also put me on the medication Lyrica to help me deal with the pain. I think it' helping some, but not much. I'm just so sad that I've lost my live. I have three young children and I really miss them. I can't even care for them anymore. Any advice would be appreciated. Thanks.

CarolynV

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lizard00 Enthusiast
lizard00
Posted

Hi! Welcome to the Boards!!! This is a great place to ask any questions or vent or whatever!

I had pretty severe exhaustion, too. I could still work, but after I got home at 2 pm, it was over from there. It took me a while to get over that, although I felt much better pretty quickly going gluten-free. You have only temporarily been set back, things will get better for you. Did your doctor also test you for any vitamin deficiencies? I started taking a regular multi, magnesium, and a good B complex. That seems to be what has made the final difference. But, I am still not back to my full energy yet. It took time for me to get this way, and it will take time to fix it. But I know that I feel so much better than I did 3 months ago, and it just keeps getting better. I don't know how long you have been gluten-free, but just give it some time. Things will start to look up!! ;)

Glutenfreefamily Enthusiast
Glutenfreefamily
Posted

I have neurological issues also. Mine are mainly bad sciatica, seizures, numbness in my right leg and foot. I also have nerve pain that seems to send them on heightened alert when Im having "D". I also use to get burning in my back from physical exertion. I am much better now, Im around 2 1/2 years gluten-free. I found I had many intolerances and leaky gut I believe. What helped me best was being gluten-free, soy free, and I couldnt handle fats at all. I had to go vegetarian and avoid nuts and oils too. Now I still cant eat soy, eggs, gluten and dairy but the other issues have subsided. Im still a vegetarian but I have tested meat and it doesnt bother me anymore at all I just choose to avoid it now. Probiotics I believe helped me alot too, I hope you get some relief soon.

Lux Explorer
Lux
Posted
Hi Everyone,

I'm newly diagnosed and have some questions. The main symptoms I have are neurological. Mostly what I experience is immense fatigue to the point where I need to be in bed most of the day. I have burning sensations and just muscle pain when I exert myself. My tongue even hurts at times. My doctor says that I am experiencing this because of the malabsorption. Do any of you here experience this sort of pain? Do you think that there is something else going on? I'm on a really strict diet that is obviously gluten free but also surgar, dairy and casin free. It's basically a diet for leaky gut. If this is just celiac disease, how long before I start getting better? My dr. also put me on the medication Lyrica to help me deal with the pain. I think it' helping some, but not much. I'm just so sad that I've lost my live. I have three young children and I really miss them. I can't even care for them anymore. Any advice would be appreciated. Thanks.

CarolynV

Carolyn,

My symptoms don't fit exactly with what you are describing, but I am absolutely certain that there are others on this board that can empathize with you. My own experience involves other kinds of pain that, despite being different in how they manifest themselves, are still symptoms of the same thing and have often left me wondering if they will ever leave.

I want you to know that a gluten free diet has proven beneficial for many, many people - and sometimes it is simply a matter of time, in finally getting that relief you so need. I want you to know that I have personally felt a lot of relief simply from eliminating soy and dairy from my diet. You are on the right track!!!!!!!!!! Please try to concentrate on the idea that you are working towards healing yourself; it may be difficult to see/remember that at times, but with every day you remain gluten free, I can tell you that you are taking a step forward.

In the meantime, please remember to use this board to vent/seek advice/comfort in the knowledge that there are so many people who are going through something similar to you.

*hugs*

RiceGuy Collaborator
RiceGuy
Posted

I second the magnesium suggestion. I also had intense, debilitating muscle aches and pains, and magnesium was like a miracle.

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