lmj623

Hi again, 

I haven't posted in awhile. I have been going through some VERY stressful personal things int he last few months and my "burning muscle" situation is worse than its ever been. This used to be the end of my glutening symptom cycle where some of my muscles would feel burning or inflamed. After one very physically demanding week and being out for a week after that (stuck on the couch with every joint in my body aching) I thought I had been cross contaminated but had no other typical symptoms. 

Anyhow- that was in February. I have been struggling to recover from my workouts (pilates, yoga, once a week weight lifting) because my abs and QL/psoas are burning. Or i am sore for longer than i normally am. 

I then recently had bloodwork for and my CK or CPK Creatine kinase was 6100, supposed to be under 200. It had been 3 days since I worked out (weights) they send me to the ER for fluids and run a bunch of other tests for inflammation or auto immune which all came back normal. My CK after a week dropped down to 700. Saw a neurologist today and waiting on a nerve muscle test in 2 months. 

Does anyone have this burning muscle situation? Since I stopped working out and resting more i am MORE tired. Would love any insight. I guess my thought is. I either have another food allergy (because the muscle pains remind me of pre-diagnosis/gluten-free diet the constant massaging of limbs) or its emotional trauma related.

Thanks

  On 10/25/2016 at 7:29 AM, egs1707 said:

Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this.

Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse

@GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same. 

I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own.

Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...

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First of all- who are these a-holes making fun of you? It's making me heated just thinking about it. Coworkers? If you don't like your job much I suggest taking a diarrhea sh*t in a bag and leaving it on their desk. Then see how hard they laugh. (sorry I have quite an interesting sense of humor/need to make people realize how not funny their jokes are).

I haven't had a whole lot of people who poke fun at me, I get the annoying "oh! That must be why you are so skinny- you are SO lucky!" Even one of my very close friends says that to me sometimes- that she wishes she wouldn't absorb all the nutrients in her food so she could lose wait. I'm sorry WTF did you just say to me?! Seriously? IF you are that desperate to lose weight maybe TRY to do something about it instead of complain to me and wish you had some effed disease. Phew- tangent.

Um. This might be against what others think or recommend. But I want to share so maybe you feel less overwhelmed. I didn't worry about other cross reactive foods or even think about it until later on. And with some worries about this and that (coffee mostly) I stopped thinking about it and stopped googling it. There are enough things for me to worry about just avoiding gluten. And I still drink coffee. Dairy has only recently become a (noticeable) issue after 3 years gluten free.

The kissing thing- I don't worry about either. Maybe because I have been with the same guy for 11 years but we don't do a whole lot of hard make out sessions right after dinner. LOL. I don't know how sensitive you are- I don't know if you even know how sensitive you are. It takes a long time to really figure this whole thing out. And then once you get it figured out- something changes (just like parenting small children!) I think with the other foods issue, because you are feeling so depressed- I would just worry about the gluten part for now (after you get through this nightmare of eating it again).

Do you have to have the diagnosis? Is it really worth it in the end? I know having the official diagnosis can make it easier to see necessary specialists and get tests done- when you stay in the hospital they try to feed you the right food. But. I don't know. Hard for me to say because my dr went about things a little differently and gave me a diagnosis just based on my symptoms being better without gluten and having a genetic test that was positive. After reading what you are going through I would bail in a heartbeat- eating that gluten for that long and still working and all that is a lot. And it will make the depression you are already going through seemingly worse. I am in no position to suggest what you should do in this instance but just a thought I wanted to share.

Anywho- hang in there. Hire a hit man perhaps to take out these evil people. or leave flaming poop bags on their porch (so you can keep your job  )

  On 10/14/2016 at 9:09 AM, GFinDC said:

Hi lmj623

Maybe try Brianna's line of dressings?  I am not sure if the ranch dressing is dairy free.  But the poppy seed and honey mustard are both dairy free.  They make 12 gluten free dressings of the 15 total they do (Oct-2016).

http://www.briannas.com/gluten-free/

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Thanks! I actually looked into a few recipes online- with the addition of a fair amount of mayo i hope its just as good  

  On 10/13/2016 at 10:01 PM, egs1707 said:

Yup that sounds a sensible way to approach it, seems to be the direction I'm going in by looks of things

Private appointment with a gastro specialist now booked for next Monday so will see how that goes, money talks I guess 

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Good luck! I just went to my regular doctor who now suggests I stop eating dairy and I about died. But whatever. After crying about it a lot and realizing after eating it that it may be the culprit for me spending a lot of time in the bathroom.. I move onward. At least we all have each other. 

Bur ur dear god can someone suggest a gluten free dairy free ranch salad dressing option?!?! I love ranch ?

I feel your pain- as do most of us. I have been gluten-free for 4 years and still have lots of pity parties. But its more than that its just down right depressing like you stated in your original post. And I am sad af. Sad that my body is betraying itself.

All I can say is DON'T read too far into all the celiac crazy on the internet. It is effing scary. I was just on the SCD website the other day like what is this?! 

About makeup- I am a chick and I have never been big on lipstick so don't fret too much unless you have a fetish for gals with lipstick  and sadly though i am married my husband isn't entirely understanding. Yes he is supportive and yes he checks labels, but i still have to double check. And he is frustrated by my situation which doesn't make me feel much better. 

You can only do what YOU as a person can take on right now. So take a deep breath- keep exercising (totally get that it keeps me sane!) I got a decent vegan (i am not vegetarian) meal supplement shake on amazon the other day and its pretty good! makes me feel less.... empty- hungry- unfulfilled. https://www.amazon.com/gp/product/B00FYD5MVA/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

And again try to not google too much. Honestly this website has been the best info I have found out there because its REAL PEOPLE. Not some stupid sales pitch. I literally lost it on a comments section of a "celiac diagnosis is a blessing in disguise" blog post. haha! it felt SOO good. 

Anyways hang in there and YES to microwave rice it is delicious and way better than any i have tried to cook

OH I forgot to say about gluten free foods- I recently tried cutting most of them out aside from lke once a week because i felt a little off if i ate TOO much in a week. I am now slowly reintroducing a slice of bread here and some noodles there because my body craves it so much and i feel like i am starving all the time. And so far i'm ok. I think the main thing is to just not eat gluten free products as often as you would have eaten regular products. For example: cereal for breakfast, sandwich with 2 slices bread for lunch, crackers and cheese for snack, burrito with flour tortilla for dinner. etc.. does that make sense?

I seem to have zero issues with corn tortilla chips or corn tortillas- i only count like gluten free bread and crackers/noodles as those crappy super processed foods. 

I feel your pain- as do most of us. I have been gluten-free for 4 years and still have lots of pity parties. But its more than that its just down right depressing like you stated in your original post. And I am sad af. Sad that my body is betraying itself.

All I can say is DON'T read too far into all the celiac crazy on the internet. It is effing scary. I was just on the SCD website the other day like what is this?! 

About makeup- I am a chick and I have never been big on lipstick so don't fret too much unless you have a fetish for gals with lipstick  and sadly though i am married my husband isn't entirely understanding. Yes he is supportive and yes he checks labels, but i still have to double check. And he is frustrated by my situation which doesn't make me feel much better. 

You can only do what YOU as a person can take on right now. So take a deep breath- keep exercising (totally get that it keeps me sane!) I got a decent vegan (i am not vegetarian) meal supplement shake on amazon the other day and its pretty good! makes me feel less.... empty- hungry- unfulfilled. https://www.amazon.com/gp/product/B00FYD5MVA/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

And again try to not google too much. Honestly this website has been the best info I have found out there because its REAL PEOPLE. Not some stupid sales pitch. I literally lost it on a comments section of a "celiac diagnosis is a blessing in disguise" blog post. haha! it felt SOO good. 

Anyways hang in there and YES to microwave rice it is delicious and way better than any i have tried to cook

I might be a little late to add but I was having a lot of spasms/cramping in my neck shoulders mid back (seemed to just keep spreading despite ART and deep tissue massages) I ended up seeing a spine doctor after MRI and they prescribed Baclofen-it's a non narcotic muscle relaxer that stopped my spasms after only taking a half pill each night for a week. Then I didn't need it anymore.

I have been gluten-free for a year though this cramping got pretty bad after a 2 month poisoning of taco seasoning.. i won't forget to check labels again.