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Recomended By Doctor To Try This Diet

Netty

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Netty Newbie
Netty
Posted

Hello,

I'm new here and have been recomended by my Doctor to try this diet . I have major reactions to any sort of sedation and narcotics, muscle relaxers used in anesthesia so my Doctor has recomended going this route instead of any invasive testing.

I have had chronic diarrehea for 5 years and have been unable to gain weight. I am underweight however am very muscular in build. I am hypomagnesia most of the time with no changes even with suplimentation up to 4 times the recomended daily allowence. As many of you probably magnesium causes diarreha so its a visious cycle! My potasium has dropped on different occations which has caused heart palpitations and tremors also, but was corrected by potassium suppliments.

I have been on Provigil (indications are for narcolepsy) for my exsessive day time sleepiness for over a year now , which was working fine, but am finding it once again difficult to fight this fatiege!

I'm frustraighted beyond belief, and am in need of some advise as to how, and where to start !

Thank you for taking the time in reading my post.

Netty

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queenofhearts Explorer
queenofhearts
Posted

Welcome to the board! I hope you find it as helpful as I have.

Your symptoms definitely sound suggestive of Celiac, so trying the diet sounds like a great idea. Have you had the blood tests? You wouldn't need sedation for that, & it might help narrow things down.

Nini has a Newbie kit that is really helpful starting out, as are the lists you can find on the site index here.

Leah

Ursa Major Collaborator
Ursa Major
Posted

Hi Netty, and welcome to this board. You sure sound like you have celiac disease, and most of your problems are common ones for celiacs. Leah is right about the blood tests, you could do those, but would have to have the blood drawn before going gluten-free. Once the blood is drawn, regardless of results being back, you should start on the diet, since you won't do a biopsy.

You need to eliminate all wheat, rye, barley and oats, and anything that contains any parts of those, as they either contain gluten, or in the case with oats, are usually contaminated with it. The easiest way to start out is to just eat things that are naturally free of gluten, until you figure out what contains it, so you can safely avoid it.

So, just eat meat, vegetables, fruit, eggs etc. for starters. And realize that most celiacs can't tolerate dairy for at least a while, very few of us have no other intolerances.

To get Nini's amazing newbie survival kit, go to her website and scroll to the bottom. You can either download as a zip file (one of the folders won't download for some people), or click on the other link and download them separately. She has taken the time to compile all the basics and it will safe you loads of time and hassle to get this.

You will also need to go through your personal care products (shampoo, conditioner, lipstick, soap, lotion etc.) and replace the ones with gluten. Look out for things like wheat germ oil, barley extract, oat bran etc. in those.

Also, you have to replace your toaster, if you are going to eat gluten-free bread, as well as your colander, wooden cutting boards, wooden cooking spoons and scratched non-stick cookware. All those will hang onto gluten, and are impossible to get clean enough to be safe.

I hope the diet is going to help, let us know how it goes!

Netty Newbie
Netty
Posted
  • Author

Thank you Ladies for your replies! My symptoms started as I said about 5 years ago after a surgery that went very bad! Ended up loosing 2/3rds of my blood supply which required 5 blood transfusions. Can this disease be aquired? I have been to numorous Doctors which I may add until this last Doctor (Allergist/Immunologist) made this suggestion. I too was diagnosed with IBS, and told "Eat more fiber"! That was a GI specialist!! The only testing he had done was a colonoscopy..

My immune system seems to have gone "crazy" within the last year breaking out with warts, planters warts, and cysts, and exema..any assosiation?? But I must add, these strange invaders showed up suddenly after these new found anesthesia reactions..in which 2 of them landed me in Intesive Care..

I feel like my body is falling apart one piece at a time....I am someone who is very active, and have a job that is very physical, which I enjoy...the muscle pain, bone pain, gut pain, is really taking its toll...

I'm a single Mom that my Boys count on.. and certiantly NOT where I thought I'd be at the age of 42!

So this has been very scary in terms of finacecle, thinking my body can't hold out much longer..and feeling like I'm going to starve to death! So in one since I'm sort of "excited" (In an odd way) that just maybe things will change with this diet?? (Praying all the way of course!)

(((LEAH)))) Where can I find "Nini's Newbe Kit"?

(((Ursula))) This sounds like a MAJOR LIFE adjustment..(In hopes of it working of course!)

Thanks again Ladies!

Netty

Ursa Major Collaborator
Ursa Major
Posted

Netty, sorry about forgetting to add the link to Nini's website last night! Here it is:

Open Original Shared Link

No, you can't 'acquire' celiac disease, but yes, surgery can trigger it if it was silent before. You were likely showing signs of intolerance before without realizing it, but not full blown celiac disease.

And yes, the immune system going crazy with celiac disease is common. I hope things will settle down on the gluten-free diet.

Netty Newbie
Netty
Posted
  • Author

Thank You Ursula for your reply! I was happy to see that the company I work for has many products gluten free.

I am scheduled to see my Primary Care Doctor tomorrow and will also run this all by her also, and see if see wil have those blood tests ordered for me. If not I'll go back to my Immuneologist.

I'm also seeing my Neurologist today this afternoon for a follow up to all these reactions I've had with anesthesia and run this by her as well. I must say I have a great group of Doctors working with me at this point although it took 5 years to gather them up and a whole lot of Quacks in between!!

I'm begining to think this may be the turning point in my life I've been hoping for! To feel good again!! Thats all I want!

Unfortunatly I had yet another set back yesterday in my health and broke a rib (Horse accident) so I'm out of work for at least 3 weeks! That will give me time to get this whole diet thing rolling!

I want to thank you again for all your help, and information!

Netty

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