Severe Weakness/ Fatigue Episodes, Dizziness, Brain Fluttering Sensation, Etc...

[notme]

I know you will not like my answer, but here goes:

 

Stop eating out. Period. I think this is your problem. IMHO and feel free to ignore. 

But it is the only way to stop the constant inflammation and symptoms.

 

Take care!

i agree =- these 2 back to back instances which have taken up nearly a month of my time have been brought to me courtesy of eating out     so not worth it

[dilettantesteph]

I know you will not like my answer, but here goes:

 

Stop eating out. Period. I think this is your problem. IMHO and feel free to ignore. 

But it is the only way to stop the constant inflammation and symptoms.

 

Take care!

 

Before talking to me about specifics about super sensitivity, go here first.  I have to agree with IrishHeart and notme! that this is the most likely source of CC issues.  Sorry about that.  

[IrishHeart]

Before talking to me about specifics about super sensitivity, go here first.  I have to agree with IrishHeart and notme! that this is the most likely source of CC issues.  Sorry about that.  

 

 

I think if Joy stops eating out, continues the clean diet and still finds she is reacting, she should contact you, Steph.

It may be a solution in the long run.

In any event, she has support here but she may need to make some changes first.

Best luck, Joy! we're here for you.

[JoyMurphy]

You know, it's funny.. That was my second biggest fear next to losing the other grains.. It wasn't as bad as i thought. I will give it a try.

Irish, i know what u mean about pursueing the ai.. I know there are dozens of ai's not just the main ones covered by the rheumy...but my pcp just throws up her hands and says she has no idea.... It makes sence to me.. And the fact that my ana raised back up again one of the weeks i was sick

[IrishHeart]

PCP docs are not our best resources. Just sayin. I mean, look at me. I went back to my PCP guy dozens of times in 12 years. He farmed me out to everyone --all disciplines. (GIs, Neuros, cardiologists,rheumies, Endos, even a psychologist.... blah blah blah) Doctors in 3 states.

Celiac is not on their radar.

By the time I was dying, he had his aha! moment. ! because I TOLD HIM what it was.

 

Admitted he has children with celiac but "did not know how it manifests in adults"....

He's lucky I was so weak I could not strangle him. Had to stop the hubs from doing the same.

 

Seriously. stop eating out. For months. Then see how you feel.

[Chrisz1000]

Hi Joy,

 

I read the title, it covers everything I have right now. I had 5 months of gluten free and responded really well. A few hicups here and there, of course. After 5 months I felt great - energy, excercise and happyness all in boat-loads.  

 

But then something started happening. Energy decreased, dizzyness here and there losing lots of weight. Feeling blue constantly. No desire to do anything. I really related to your original post.

 

Like you, I still eat out 2/3 times a month. But I know for sure I am not getting contaminated and I am pretty sure you aren't either. You just *know* when you've had CC - there's an immediate reaction or at least a noticable one in the following hours or day.

 

I've been reading into the other AIs and it seems like you may have a thyroid issue, maybe Hashimoto's? Look at the symptoms list for Hashi's on Wikipedia (for example) - you have a lot of those symptoms to the extreme. Hashimoto's would explain a lot of my symptoms too. I seem to have the gluten free thing down really well, but I've stopped making progress and now something else is trying to slow me down. I have some hospital tests over the next 2 weeks so hopefully I can find out.

 

You seem to have the diet nailed so, contrary to the other advice, I would be reluctant to restrict yourself even more. Of course eliminating restaurant food is a good 'rule-out' excercise.

Good luck.

[dilettantesteph]

A big contamination you feel right away and it hits you hard.  A small contamination can sneak up on you.  Those symptoms get worse and worse and it can be very hard to figure out what it is.  I've been doing this for 6 years and this has happened to me several times.  Eventually I figure out the source and fix my health problems by eliminating it.  If you are sensitive enough to need a gluten free household, then you can expect to have problems eating in any facility that isn't gluten free like a restaurant.

 

Eating out used to be one our main socializing things to do.  I loved trying new things.  But, not eating out isn't that bad.  You have a lot more money for one thing.  You can still try new things with exotic ingredients, fresh produce from the farmers market and such.  I'm eating all sorts of vegetables now that I barely recognized before.  When you get away from all the sugar and salt in most processed foods your palate changes and you appreciate the flavor combinations of fresh foods.  After all, when you go to the best restaurants, they are all cooking with fresh whole foods.   What really got me the most was having to do all the cooking.  Then my son grew up a bit and started doing some of the cooking.  He makes different things than I do and I appreciate the variety and the break.  Another thing that can be hard is getting food when you are in a hurry.  To solve that problem, freeze up a few meals when you have extra time and then just can heat them up in the microwave when you are in a rush.

 

Try it for a month and see if there is a change.  It could be well worth it.

[Chrisz1000]

Yea I appreciate your perspective and I believe you when you say it helped you. I have experienced tiny contaminations in the past - it really is an unbelievable disease when a grain of flour can hit you for weeks.

 

Large or small though I know when I've ingested gluten. Personally, I've gone at least 6 weeks without eating in a restaurant and seen a deterioration in health during that period so I myself am confident its not restaurant contamination that is knocking me.

 

Maybe for Joy avoiding restaurant meals whilst pursuing thyroid testing could be worthwhile?

[JoyMurphy]

I just don't quite know what to do with the pcp right now.  I feel like she is against me.  Right now, I'm putting everything back into the celiac "basket" and looking into the restaurant possibility.  The fact is that right now, none of the bloodwork is showing another AI..though I know that it can take up to seven years even to get an accurate celiac diagnosis...so maybe this is the case with another AI....Who knows.  But at this point, those dr's have dismissed me 100%.   I even asked about Addison's Disease, b/c my symptoms are almost exact.  But endo looked at me like I was nuts.  Ran a few tests and patted me on the back.  So I wait.  

The only thing I can do is take care of myself in the meantime...I have started doing yoga at home, I'm better at taking at least my Vitamins, started a probiotic, trying to cut back on stress,.

I will cut the restaurants for a few months and see if that makes a difference.  

I see the nutritionist in dec, which should be good.  I know she should have some more insight.  I also crave a lot of natural sugar, which may mean something somewhere.  I eat 2-3 apples a day and bowls full of grapes....which i never did.  my body for some reason craves the sugar.  

Argh I used to be such a foodie....I remember a day when anytime someone needed restaurant suggestions...they would come to me.  My therapist even came to me for new restaurant advice....lol

[JoyMurphy]

steph,

I have found this to be true.  Since getting so sick, I have been forced to be more creative in my cooking.  I have always loved to cook.  Always a cook, not really a baker....Now I'm a great baker too?  My cooking has definitely evolved.  Even with the Fasano, it forced me to be more and more creative.  Some of my best recipes came out of cooking with fresh ingredients.  Pan roasted chicken with roasted squash and apples, with rosemary and sage...not so hard to take.  

It got to the point where when I went to the restaurants, I was turning my nose up at the food, b/c what I made at home was better.   But you are right it is a convenience thing....I need to get better at prepping frozen casseroles and such.  Which I did last year.  I was watching the pioneer woman on the food network, and she was doing prep work for her freezer meals.  I need to plan a day for that.  Even making grilled ckn breasts to freeze for my kids lunch boxes.  

This year I expanded my garden by double the size, went all organic.  Canned 10 quarts of tomato sauce.   Which I always make my own, but I used canned tomatoes.  Now I grew them all.  I make all my own broth.  The nutritionist had me drinking 2 cups a day last year.  I started up again.   She told me that would help repair the brain.  I use the rest to cook with. 

It's funny, I had more energy 6 months ago than I do now.  That is the scary part to me.  I feel like I am slowly slipping backwards.  When I do have a day where I feel pretty good, I pack it with as many things as I can do.  And then I wind up in total exhaustion.

[Gemini]

I have been gluten free since Feb 2012.  Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted.  To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease.  Now I'm not sure.  The dr.s have no clue and I believe they are ready to send me for a psych consult.  The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it.  My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time.  I have been doing better since the Fasano diet, but these things have stood out glaringly.

I have persisting dizziness and lightheadedness.  Fatigue is severe.  I wake up fine, and do as much as I can before I am a waste case for the rest of the day.  That is between 6-9 am... and then I am exhausted for the rest of the day.  If I rest, I can get a little energy back and it is gone quickly

I feel like a cell phone that can't hold a charge.  I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation.  My face goes grey, my eyes are sunken.  I need assistance getting into a chair.  It takes a few hours before this passes.  I feel like I am trapped in my body.  Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain.  It is very concerning. However, the neurologist has never heard of this before.  (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!)  When these episodes pass, they leave me exhausted for hours to days.   

Please can someone advise if they have had some of the same symptoms?  

My ANA is high, 640   My ttg is around 29.  I live in 100% gluten free house.  Including all of my beauty products.  

Joy....you do not do a dietary check using the tTg.  Having a still elevated tTg after being gluten-free for awhile does not necessarily mean that you are being glutened. It can mean you have another AI disease popping but you know how hard that is for them to figure out. 

 

My tTg remained a little elevated for awhile after I went gluten-free.  I was not being glutened.  I had thyroid disease and it took healing to the point where I was absorbing my meds better for it to go down to low normal.  The doctors didn't figure that out....I did. 

 

MRSA can really screw people up.....my sister had MRSA twice and she got it from a hospital.  Don't ever let a doctor tell you to stop throwing a word around.  They don't like it when it's MRSA because it's the medical profession that is responsible for that one.  Overuse antibiotics for 40 years and this is what happens.

 

Neuro issues can take a long time to heal....much longer than gut symptoms.  But with a stubborn tTg and higher ANA, along with your symptoms, I would bet there is another AI issue going on and they are not good at finding them.  I am so sorry you have been going through this.  I wish you a world of luck in getting to the root of your problems.

[GFinDC]

Hi Joy, Joy, Joy in the morning!

 

Since you had improvement on the more restricted diet it seems like that is a good starting point for you.  I suggest you stick with that diet for 6 months to see how things go.  Eating out is always risky, so I think you are right to stop that for now.  I suggest you cut out coffee and any other caffeine for a couple months also.  Caffeine makes your body race and then crash, and that cycle repeats whenever you drink more of it.  That's not something you want happening in a sick body.  Some people think caffeine worsens adrenal fatigue symptoms, and I might be one of them that think that there a-way.  Regardless, you will know after a month if it helps you to remove it.

 

Other food intolerance besides gluten can cause symptoms also.  You could try eliminating things like nightshades, dairy, soy, eggs etc, or all of the top 8 food allergens for that matter.  But I'd try the coffee and not eating out first.

 

[JoyMurphy]

 I was worried about the coffee too.  I know I am supper addicted to it, and I have actually increased the amount of coffee I drink.  Good lord, there goes all the fun!  TBH I would rather do things I can control rather than trying different types of meds.  

[GFinDC]

Makes sense to me Joy.  Take care of it with diet when you can.  I can tell you that coffee has a bad effect on me.  I tried drinking it over the summer again.  Worked fine for a couple weeks but then I got sicker and sicker.  I stopped it and got better fairly quick.  It just doesn't work for some people.  I used to be a big a coffee drinker though.  Now I find it more fun to scowl the the Starbuck's patrons...   

 

[AnemiaFibroGluten]

On 11/2/2013 at 2:39 PM, JoyMurphy said:

I have been gluten free since Feb 2012.  Many of my symptoms have subsided, but there are some alarming ones that have maintained and persisted.  To the extent I had gone back to the dr. b/c I believed them to be something separate from the celiac disease.  Now I'm not sure.  The dr.s have no clue and I believe they are ready to send me for a psych consult.  The neurologist alluded to a conversion disorder...psychosomatic etc.....I know that is not it.  My celiac dr had put me on the Fasano diet, b/c I am so sensitive to gluten, and the 3 accidental exposures I have had have laid me out for 5 weeks at a time.  I have been doing better since the Fasano diet, but these things have stood out glaringly.

I have persisting dizziness and lightheadedness.  Fatigue is severe.  I wake up fine, and do as much as I can before I am a waste case for the rest of the day.  That is between 6-9 am... and then I am exhausted for the rest of the day.  If I rest, I can get a little energy back and it is gone quickly

I feel like a cell phone that can't hold a charge.  I have episodes when I am walking, I start to slow down, balance is off...weakness takes over, I can barely walk, or hold a conversation.  My face goes grey, my eyes are sunken.  I need assistance getting into a chair.  It takes a few hours before this passes.  I feel like I am trapped in my body.  Sometimes this comes with a sensation of a shivering or fluttering sensation in my brain.  It is very concerning. However, the neurologist has never heard of this before.  (thankfuly my celiac doc told me yesterday that he has had patients with the same fluttering....No other dr!)  When these episodes pass, they leave me exhausted for hours to days.   

Please can someone advise if they have had some of the same symptoms?  

My ANA is high, 640   My ttg is around 29.  I live in 100% gluten free house.  Including all of my beauty products.  

This is anemia. You are feeling these things from the malnutrition that comes along with having celiac disease. I experience this when my iron is really low. Please take care to get tests on your levels and then remedy from there! 

 

[MotherMary]

I'm a newbie here!!! 

But, I found your symptoms very familiar! 

My stepmother used to go through exactly what you're describing! Down to the brain tremors! 

She went through miles of tests, and years (2) later, finally got a diagnosis. Menier's Disease. 

I'm not a Dr.... However, I did find it interesting that you share the same symptoms. 

It's a rare disease, but that doesn't mean you should count it out. 

I hope you find relief soon!