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Cfs Sufferer

SickPuppy

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SickPuppy Newbie
SickPuppy
Posted

G'day!

I'm new here so I'll fill you in on my story...

What started as Glandular Fever developed into a Post Viral Induced Chronic Fatigue Syndrome. I've had this condition for almost six years now. I have tried all sorts of diets, remedies, exercise plans, drugs, vitamin supplements, all to no avail. I have tried being gluten free before but at the same time it was no dairy, no preservaties and no additives. Basically just fruit, veg and rice. It was too hard to follow and with no signs of any improvement I stopped it within 4 weeks.

After Glandular Fever my immune system was shot. Every time I catch something, be it a cold, hayfever, a bug, rash, infection or virus, it takes a long time to get over it and it knocks down any small recovery I may have made with CFS.

Recently my doctor encouraged me to try a gluten free diet again. I've read that a majority of us are Gluten Sensitive, but the symptoms rarely show because the immune system can deal with it. As I am so weak I think it makes sense to cut gluten out of my diet so that my immune system has less trouble to deal with.

I have been gluten free for two weeks now with no signs of improvement. Actually I feel worse but it is summer in Australia and the heat never helps. How long should I try being gluten free and can one tiny ingredient stuff things up? I have made a few stumbles from certain products.

Look forward to reading more, posting more and learning more...

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome, sick puppy!

I hope to see you change your name to "well puppy" soon!

Yes, one ingredient can totally mess everything up.

SOunds like you have an amazing doctor!

Perhaps you need help with figuring out menus? Many of us found that when we cut out gluten, our poor unhealed intestines could not at first tolerate the gluten-free substitute breads, cookies, pizzas, pastas, etc. Not to mention all the preservative and chemical-laden things like fake maple syrup (there's a thread about that somewhere here). And some people have more than one food intolerance. :(

ANyway, I just wanted to suggest that you stick to fresh fruits, fresh vegetables, rice, potatoes, fish, chicken, meat for a few weeks and see if that makes you feel better. Many here were also unable to deal with lactose until their intestines healed. If yogurt makes you feel worse, you might want to look into finding a probiotic or else trying soy yogurt if you're okay with soy.

Hang in there--hop you feel better soon!

marciab Enthusiast
marciab
Posted

I agree with Fiddle Faddle. Stick to healthy meats, fruits and veggies at this point. Did your doc mention candida or toxins ? Many people with CFS have these too.

I was diagnosed with CFS/ME/FM back in 1990 and after 1 year on a diet that is GFDFCFSFEF and chemical free, my ataxia (balance problems), myoclonus (jerking) and insomnia are gone unless I eat some gluten.

I'm still more tired than I'd like, but I'm extremely sensitive to a lot of things, like dust mites and cleaning chemicals ...

Good luck ... marcia

CarlaB Enthusiast
CarlaB
Posted

Did your doctor give you the celiac blood tests? If not, I would want to get them before you go gluten-free. :)

Here's something else to check out. Open Original Shared Link

SickPuppy Newbie
SickPuppy
Posted
  • Author

I have read a book called The Gluten Connection by Shari Lieberman. The cover of the book says...

Reduce or reverse symptoms in just 14 days!
So I was wondering, knowing my situation, if this is accurate. Otherwise how long might it take?

I've had no Celiac tests, so I will ask about it next time I see my doc. In any case I believe it is beneficial to be gluten free. I have been on the diet for two weeks, but I've made some mistakes and as previously mentioned that can totally mess things up so I guess the count is reset at zero days.

ravenwoodglass Mentor
ravenwoodglass
Posted
I have read a book called The Gluten Connection by Shari Lieberman. The cover of the book says... So I was wondering, knowing my situation, if this is accurate. Otherwise how long might it take?

I've had no Celiac tests, so I will ask about it next time I see my doc. In any case I believe it is beneficial to be gluten free. I have been on the diet for two weeks, but I've made some mistakes and as previously mentioned that can totally mess things up so I guess the count is reset at zero days.

You don't need to wait until the next time you see him. You can call the office and talk to the nurse and he can order the tests over the phone. You might have to pick up a lab slip or they can send one to your local hospital lab by fax. You could possibly get the blood drawn the day you call. But do you really need to? You have had a good response to the diet and had symptoms return when eating gluten. That really is the best test there is. If you do decide to blood test regardless of the results of the blood testing you should give the diet a good try. It only took a couple of weeks for my GI related problems to go but it took longer for CFS and Fibro symptoms to resolve. The ataxia and nerve issues for me took the longest to see improvement but those had been with me 40 years. I agree you have a great doctor, please listen to him.

SickPuppy Newbie
SickPuppy
Posted
  • Author

I keep making mistakes :lol: This is hard. Thanks for the replies though, I feel encouraged to continue.

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ravenwoodglass Mentor
ravenwoodglass
Posted
I keep making mistakes :lol: This is hard. Thanks for the replies though, I feel encouraged to continue.

It is hard at first but it is doable. Any questions you need to ask please do so. We all make mistakes at first, heck mine continued for almost 2 years and I still make them now and then. It will be so worth it in the end though if it helps. I was so happy to just have one pain free day and one nights sleep without being awoken by cramps, then it wasn't long before those days and nights were coming one after the other. It is a slow process sometimes to get as sick as we were and it is a bit of a process to heal also. Keep going.

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