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IveGotEffinCeliac

Member Since 04 Jul 2010
Offline Last Active Jun 26 2013 12:08 PM
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#645447 My Description.

Posted by IveGotEffinCeliac on 11 October 2010 - 11:35 AM

Yep. I find it confusing because the "shredding" almost feels like hunger at times...except there's nausea in there as well. It was how I knew I got glutened at my in-laws' house last night. Grrr...


I feel so bad yet so happy that I'm not alone. This is exactly how it feels. Nausea and all. Celiac disease should be some sort of Corporal punishment for hardend criminals.
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#632521 1 Month Gluten Free - Still Some Hiccups

Posted by IveGotEffinCeliac on 17 August 2010 - 02:48 PM

It certainly can be, but - for me - it developed years after going gluten and dairy free.

Good luck figuring out the sleep issues. A chronic lack of sleep is murder on the body, throwing MANY systems out of whack and creating problems that you might not ordinarily assign to sleep.


Thank you. I've just accepted that sleep will always be a struggle. I can live with that, much easier than I can live with the way my body looks today compared to 2 years ago.
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#632520 1 Month Gluten Free - Still Some Hiccups

Posted by IveGotEffinCeliac on 17 August 2010 - 02:46 PM

I hate to tell you this but it can take awhile to heal and your body can get all wonky for awhile.

Don't hate me, but I wasn't fully well for 6 months. I did get better all the time, but feeling really good and having symptom free days took awhile. At 1 month I was still very very sick and not functioning too well.



I'm definitely not hating. There's just this sense of urgency to get myself back to my pre celiac days. My wife is expecting our first child in 8 weeks, and I don't want to be sick anymore when my son is born.

The cross contamination is a real concern of mine. I eat free where I work, (I manage a department at a casino) but there's no definitive way to prove or disprove cross contamination. I eat exactly the same thing at work each and every day. I have plain old cottage cheese with sliced canned peaches. I have plain scrambled eggs with some basic salsa mixed in. I have chopped fresh fruit.. Usually its watermelon and pinapple.

I don't see bringing food to work as a viable financial option. So hopefully I'm not beign cc'd when I eat there.

I totally get it about one month not being long enough for me to feel better. I'll keep pluggin away and hopefully my body really is reparing itself.
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#631488 1 Month Gluten Free - Still Some Hiccups

Posted by IveGotEffinCeliac on 13 August 2010 - 12:53 PM

How is your sleep? Do you feel tired during the day, regardless of how many hours you spend "in bed" or "asleep"? You might consider a sleep study. What you describe is similar to how I would describe my fibromyalgia, which was significantly contributed to by restless leg (which was contributed to by anemia, but not due to celiac disease).



I will definitely look into this. Let me ask you this, isn't anemia one of the many different manifestations of celiac due to the inability to absorb iron? I've always had trouble falling asleep. Honestly, I wouldn't imagine it was at all related to my celiac. I've had sleep issues for close to 20 years, and just figured it was a part of life for me. Ambian, lunesta, anti depressants, benedryl, soma's... You name it, I've tried to use it to help me sleep. Definitely ask the doc about a sleep study.
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#631255 1 Month Gluten Free - Still Some Hiccups

Posted by IveGotEffinCeliac on 12 August 2010 - 05:58 PM

Only a month isn't that long.

You could still have cross contamination issues that you are not aware of yet. Be sure you are not accidentally getting gluten from old cooking pans, toasters, colanders, cosmetics or pet foods or somebody else's crumbs. Depending on the amount of damage you have it is going to take awhile to get healed up and be able to use nutrients. You might also have a food intolerance to something else, such as soy or dairy or another food group, and you will find yourself doing better once you get settled with what sort of food agrees with your body and gives you energy.

I found that once my hormones started dropping off after menopause, in my mid fifties now, my short term memory got worse, so I have to develop tricks to work around this, and just accept that the really good, effortless memory I used to have is gone and I now have the regular model. :huh: This means I don't hesitate to write notes about stuff instead of winging it from visual images.

I take a multivitamin, B complex, and a calcium/D supplement, and I eat a lot of blueberries.

This also means that if I want to continue to write things that don't sound like gibberish I have to discipline myself more. I was eating more gluten free carbohydrates early in the day, but that just doesn't work for me, and I seem to think better on proteins and fats. This means I went back to something closer to a specific carbohydrate/Atkins style first meal. I also have to exercise.



Thank you very much. Although I'm not willing to accept my memory loss, because I know that it can be reversed, I'll definitely consider cross contamination as a possibility. Thank you so much for the input, and helping me make sure my writing also doesn't sound like gibberish.
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#631220 1 Month Gluten Free - Still Some Hiccups

Posted by IveGotEffinCeliac on 12 August 2010 - 03:12 PM

So I've been strictly gluten free for a bit over a month now and a few things seem to be really improving. Along with this forum, that gives me hope. However, the two symptoms that were/are most concerning for me haven't changed at all.

1. The mental "brain fog" isn't getting any better, and my short term memory...... Forget about it, it doesn't exist. Period. I'm absolutely unwilling to accept that this is how I'm going to function mentally from now on. That's not going to happen. Does anyone else feel this way?
2. The muscle fatigue is like nothing I could have imagined prior to a year ago. I can't squat down to play with my nieces without feeling like my legs are going to give out on me as I try and stand up. This one breaks my heart. I don't even recognize my body in the mirror anymore.

I guess my question at this point is, who all does their own vitamin injections, and specifically what are ya'll taking besides a really good (gluten-free) multi, and a healthy daily dose of Omega 3's?

I'm going to start doing B injections, just wondering what everyone else takes/injects. I'm very comfortable doing self injections both intramuscular and subcutaneous. I've got the fish oil, and multi down pat, now I need to know what else I need to be researching.
Just as an aside, celiac.com is amazing and I'm so grateful to have found this forum.
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#622092 Post Diagnosis

Posted by IveGotEffinCeliac on 06 July 2010 - 02:49 PM

Glad you found a good multi. People are so reluctant to spend some money on a vitamin. They don't realize their One-A-Day goes straight through the gut and hardly gets absorbed. I've been talking the double strength Nature's Bounty fish oil. It's been independently tested and comes up free of PCBs and mercury.


I'll find Nature's bounty fish oil. Thank you!
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#621960 Post Diagnosis

Posted by IveGotEffinCeliac on 06 July 2010 - 06:43 AM

For me, having a really clear mind requires a pretty good chelated multivitamin/mineral supplement and a couple double-strength fish oil capsules a day. If I slack on the supplements I start to get insomnia, brain fog, and some mild depression.


Thank you! I've got the multi sorted out. I've been taking Nature's Plus Source of Life (iron free version) for the last 3 years. I'm not going out on a limb when I say this is the very best multi out there. It's a bit pricey, but well worth it. And gluten free! I haven't even had a cold in well over two years. Any recommendations on a good fish oil suppliment?
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#621824 Post Diagnosis

Posted by IveGotEffinCeliac on 05 July 2010 - 02:36 PM

I hope the improvements are just spectacular for you!

I know for myself, my memory, emotional control, and depression improved significantly on a gluten free diet. I also had joint and muscle pain and that improved significantly as well. On this gluten free path- which sounds a little cheesy, but hey, I'm leaving it in - I've been amazed how many things I just took for granted as just being 'me' that have turned out to be gluten doing bd things to me. I sincerely hope that you find the same thing!


Thank you! I'm actually most worried about my overall brain function. Its a real dissapointment that my body has changed so dramatically over the last couple years but truthfully, I can't see a future for myself without total and complete restoration of my mind. Without that, my intestines and body don't mean much at all.

I'm staying positive, and I'm very grateful to have found this website and everyone here.
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#621708 Post Diagnosis

Posted by IveGotEffinCeliac on 05 July 2010 - 08:47 AM

Thank you both for responding. I'm sticking in there. Meeting with a nutritionist next week, and we'll see how things are in six months.
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#621603 Post Diagnosis

Posted by IveGotEffinCeliac on 04 July 2010 - 03:10 PM

So its been two weeks since I was diagnosed. Actually, I didn't really freak out at all. I was overjoyed to find out that all my seemingly random symptoms could all be linked to one disease. Two weeks in to the gluten free life, and I'm just now starting to feel overwhelmed.

I don't know if celiac has any effect on mental cognition, but mine is definitely off. I'm unable to think as quickly and react like I used to. A very general and generic way to describe this is that I've been feeling slightly "stupified" for the last year or so. Obviously, I can't speak for everyone with celiac, but losing any mental functionality has me petrified.

About one year ago, long before I'd ever heard of celiac, every single joint in my body began to crack. Not just an occasional crackle or pop here and there... This is litterally every joint in my entire body from my fingers to my hips. Most noticable is knees and ankles, I would venture to guess because of the larger stresses they encounter. The GI told me this is likely from being unable to absorb calcium. On that note, he gave me an idea of his interpretation of the severity of my celiac just based on pathology. Basically he told me that in his experience with 1 being very mild, and 5 being the worst he's ever seen, that I was a 4.

The downhill journey for me physically began three years ago. Over that 3 year period I have gone from having a swimsuit model body, to something that I don't even recognize. My muscle weakness (especially in my legs and shoulders) is almost comical. It's like I'm weaker than my 4 year old niece. Sometimes just holding my arms up in a certian position takes every ounce of stamina I've got.

I'm 36 and have no idea how long I went undiagnosed.
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