Update On Me: New Diagnoses (Chronic Dys, Cfs, & Gluten Intolerance)

[hilbiligrl]

hello all:

just wanted to update that at my last doctor visit, my doc had a chronic fatigue specialist with him to talk to me and all. So, here's what is being said about my 'case'. Doc says he put down that i have 'chronic autonomic dysfunction' (not sure if that is a true medical term for the DYS, but well, it really describes me..... chronic.... lol). Also, added to that: Chronic Fatigue Syndrome. I figured i had it anyways for many years, but i hate that phrase to it's core because it is so misjudged and misunderstood as to the true severity of it. Also, i was ordered on a 100% gluten free diet. And, I have implemented yin yoga since i have no strength to stand, etc.

The gluten free diet, oddly, has made a difference. I honestly, just didn't believe that gluten could be doing so much damage, but im amazed at the difference. It's not a cure, but I can tell it has made a real difference. In still in a 50-70% bedridden range.... and still having only a couple of real good days a week. But I admit, it is very hard to stay on track and i mess up a tad here and there..... but it is working progress.

Im also being prescribed dronabinol, but working on getting it covered, as it is like over 500 a month. We are hoping this will help with my relentless nausea, vomiting, diarrhea and the extreme 'sick' feeling that i suffer through every second... (lots of suffering and agony going on that is so very undescribeable).

Anyways, just thought id post an update on my diagnoses and see what you guys thought.

Many blessings everyone

tennille

[misstraci]

Good news on the diagnosis' and the fact that the gluten free is helping, even if only a little bit. I'm happy for you and I hope you can get the prescription covered so it can help with all those GI symptoms. I wish you the best and hope things continue to improve for you!!!!!

[sue1234]

I've been wondering where you were! Glad to hear the gluten-free diet is helping. I'm gearing up to begin one. I've been reading all I can so that I know how to shop. Picked up a few things yesterday to put in the freezer for when I'm ready to begin. Keep us posted on how you feel. Also, I see you take a variety of prescription/non-prescription meds. You may have to have a pharmacist review them all to make sure they are gluten-free, especially all the supplements.

[Dizzysillyak]

I'm happy to hear that the gf diet is helping you .. It's made a huge difference in my life. I still

have dysautonomia but that doesn't mean you will. Our bodies are all different.

I didn't see how long you've been on it and wanted to point out that if you're like me and

most people I've met, more positive changes are on the way but it takes time. It took a year for

my ataxia to disappear completely. Look for gluten cc, nutritional deficiencies, and dysbiosis

if this doesn't happen. Or if you're up to it, look for these now in order to save time.

And, not to

be a downer but you more than likely have other food intolerances. Dairy and soy are my two

most noticeable food intolerances but it really depends on what you've been eating.

I've met several people over the years who've figured out that the paleo diet was necessary

in order to feel healthier. Whether it.s a glucose issue or those described by cordain, I don't

know since grains and legumes are high carb.

Which reminds me, Dr. Myhill, a cfs specialist, says that most pwcs have chronic hypoglycemia

so she recommends the paleo diet. Oh and I just learned that carbs and glycemic levels aren.t the same

thing, pumpkin nailed me ... It's low carb high glycemic ..

Good luck ... Sorry for the book .. D

[janiedelite]

Yay, Tennille! That's great!

[Katybug]

Not that I ever want to hear there are more things wrong with anyone here....but, it's great that you are making diagnostic progress and you are finding treatments that are making you feel better. Every little bit of feeling better is great! I'm really happy to read your post too. You sound so much more upbeat and hopeful.