Miriam3

Hi all!

Anyone gotten useful advice from their doc on magnesium and calcium? Mine doesn't want to commit to anything because he doesn't know. He starting out advising me to take calcium. I told him that when I just take calcium I get migraines. I also get migraines if I DON'T take magnesium. And after exercise I sometimes get muscle twitches and I can't tell if I need calcium or magnesium. That totally flustered him.

I tried asking if I should try to take both somehow, but he couldn't sort out what to tell me. He thinks my bones are okay right now (based on looking at an x-ray). But I haven't taken calcium in a long time because of headaches. He thinks both calcium and magnesium are nice, but has no idea how much of each is good or whether I should space them out since they can compete with each other. Anyone?

I'll add one more "me too"! When I've been glutened I have to pee over and over for hours. In between my bladder is uncomfortable too, almost like having a urinary tract infection but it goes away on its own after the gluten episode. Sometimes this happens at night and it's hard to sleep (and very hard for my husband to sleep as I am shuffling into the bathroom all night!)

I've also had the other type of frequent need to pee-- just after I went gluten free I dropped a lot of water weight. It wasn't uncomfortable, but I peed frequently for a few days as the stomach bloat, swollen fingers and oversize legs deflated. This was the good kind I guess!

This is a really positive thread and is really nice to see. Thanks ElizabethN!

I'll add that my husband has been really great about the diet and making me feel less alone with my high-maintenance food issues. I just came back from a trip and he had taken a trip to the health food store to make sure I wouldn't starve when I came home. He even bought and made an Arrowhead Mill gluten free chocolate chip cookie mix because he knows I miss cookies sometimes I had never tried these before and they were incredible (chewy and better flavor than any of the cookie stores I ever used to stop at in the mall!)

Last night I was feeling down and he remembered my comfort meal always used to be pizza and root beer. He went out and got the root beer and pizza toppings and we put it on an Amy's rice crust pizza. I offered to get him real pizza but he wanted to eat the same as me.

It feels good to have someone who understands. Especially someone who has seen the "before" and doesn't think this is some wacky lifestyle choice.

It happened to me and it was creepy! This was long before I was diagnosed. I had gotten the flu. I couldn't eat much for a few days and around the time I started getting better a CRAZY amount of hair fell out. It was evenly distributed, so no bald patches, but my ponytail wound up being less than half as thick (had to buy those tiny hair ties). I'm sure I was already on the edge of malnutrition and a couple of days only eating applesauce just finished off the hair.

I have always shed a lot of hair-- my sisters too, and the doc didn't care because it didn't seem to be thinning overall. I'm shedding a lot less though since I went gluten free. Anyone else notice this?

Sorry to add bad news, but I lived next to a wheat field once (before I knew I had celiac)....it is the sickest I've ever been. Now, I don't know whether it had anything to do with inhaled proteins or anything, that's just the time I was sickest in my life. I got to where I couldn't eat anything without being doubled over in pain and I had bad tingling in the hands and awful constant eye twitches. It was such a cute house, though-- a little farmhouse in the English countryside. Another bad issue I had while I was there was intense itching in my legs, especially after a shower. Now I know it's called pruritis and it's associated with celiac-- something to do with deficiencies that make keratin in the skin abnormal. It's also related to climate too-- cold and dry (inside) in winter. It was worse in that house than other places I stayed in the area and I was convinced it had something to do with the water (could water get contaminated with wheat?-- maybe that's farfetched).

I'm not sure how much of this applies to the house you're considering, but I'd beware of exposing yourself to the wheat. I'm putting in an offer on my dream house right now and I know how it is, though. Good luck!

Where does everyone buy this Jay Robb's protein??!!! I have searched the internet and it seems everyone is out of stock. Any help?

What is micronized creatine?

I used to take GNC's creatine monohydrate. The roughest form of creatine out there these days, I guess, but GNC is good and labels everything exhaustively. Most of their stuff is gluten free too. It worked for me.

The bummer for me is their creatine ethyl ester. It comes in pills that don't cause bloating and get into the muscles so well without a loading phase! But they actually say they aren't recommended for people on a gluten free diet. Anyone know why? (No obvious wheat ingredients). But of course I don't have to be told twice. I took them before I was diagnosed. Now they're off-limits. If anyone knows of another brand that doesn't have that problem, I'd love to know.

Unwanted muscle clenching can come from Magnesium deficiency! I have terrible deficiency of magnesium. I didn't know that for years and by the time I was in my teens I had ground my lower molars wayyyyyy down. I don't remember doing it, but I must have ground my teeth in my sleep starting in childhood. The magnesium problem also caused me migraines. Magnesium helps you relax muscles once you've clenched them. If you don't have enough, you can have a lot of problems with cramps, etc. too.

I take about 500 mg a day (you can take half that and see results though). I think good old Magnesium Oxide works the best-- cheap and easy to find. GNC's brand is gluten free (but so are most others). I've heard you absorb Magnesium citrate better, but it's expensive, you have to take tons of pills, and I've never seen great results.

Give it a try for a couple of weeks, and let me know if you wake up with your jaw feeling better!

Acid reflux - and the PA (yep, didn't even get to see the doc) kept telling me it was impossible that all the stronger and stronger antacids she was prescribing weren't working.

My imagination - I actually sat outside in the hallway while my doctor and her boss talked about how I might be making all this up.

Then there were a bunch of non-diagnoses - basically they do a lot of tests that prove your symptoms-- so I got sent away once told I was hypoglycemic and the next time that I had Raynaud's phenomenon (yeah, like I need someone to tell me that my hands are cold and my fingernails are blue).

Grey, it is good to meet you on this forum. I hope we can exchange experiences and learn from this, because it seems most doctors don't study ADHD or celiac much.

Bottom line, I'd tell you people with ADHD spend forever trying to find the right drug and then the right dose. They go through all kinds of side effects trying to decide if it's really better. As sick as you are, I wouldn't take that on and confuse the issue right now.

My story... long, sorry....A little over a year ago, I went to the doctor because I was tired of the ADD-type symptoms I felt like I always had (losing/forgetting things, exhausted trying to concentrate, forgetting names right after I meet people-- all the way back to when my parents got called in to talk to my Kindergarten teacher). I convinced my doc to send me to a psychiatrist, got diagnosed with inattentive ADD and started on Strattera. Strattera helped. It helped me be more on top of things, concentrate longer and get more done.

I still had other nagging issues though. Stomach problems come and go, I am skinny in strange ways (gaunt face, tiny arms, poor muscle tone even when working out), hypoglycemia, migraines, Raynaud's, muscle twitches. When I get weak or stressed, a whole pile of symptoms comes along, but the doctors always tell me it's stress or in my head.

Recently I was researching for a single thing that could explain all these strange symptoms, and learned about celiac. I tried a gluten-free diet just to see, and in three days I was feeling better than I ever remember feeling. Hypoglycemia, brain fog, gas, all gone. It's been over a month now. I started taking B-12 and B complex vitamins and that made me feel even another bunch better.

But now I'm in a pickle...I had to take the max dose of Strattera for it to work (now realize duh, bad intestines). That now makes me totally loopy. I've cut my dose almost in half and I'm not even sure I can handle that much. I don't even know if I need it at all... But I'm stuck between my primary care doc and psychiatrist who have no idea what I'm talking about with celiac at all.

Sorry, this was long. I can tell that you're sicker than I ever was--I never got admitted to the hospital! But my experience says you could have ADHD, or maybe you have been malnourished for a long time without knowing it. I don't know about you, but I'm sure I ate wheat at least couple of times a day for almost 30 years. I hope you can stabilize and get your nutrients in order before you have to make a decision about ADHD...please keep posting!