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Member Since 01 Dec 2012
Offline Last Active Feb 22 2015 11:55 AM

Posts I've Made

In Topic: Please Help...feeling So Discouraged!

21 February 2015 - 04:38 PM

I'm sorry this is so discouraging for you. I know how frustrating it is when you're trying so hard to stick to a healthy diet and you still hit setbacks. Have you ever heard of Cyrex labs? They do a lot of different tests for food sensitivities and gut permeability and I'd really highly recommend getting some tests done. I was in the same boat as your husband last year. I had been gluten-free for a year but still felt like crap, in fact I felt even worse than I did before going off of gluten. Constant digestive issues, extreme fatigue, hormonal problems, you name it. I got a few Cyrex tests done and I found out that being gluten-free wasn't cutting it. I'm also sensitive to dairy, corn, amaranth, teff, and tapioca. I was SO overwhelmed by this, but I actually felt better after going off of those foods, so it was worth it.

I think that sometimes you can go on an elimination diet where you cut out all foods that can cause sensitivities such as grains, dairy, eggs, nightshade vegetables, etc., and then add them in one by one to see if you have a reaction. To me, it was worth it just to get the lab work done, but you might want to think about that as well.

Gut healing is a weird thing because it really does seem to get worse before it gets better. Hang in there.

I also found success with the food intolerance blood test. Mine was a different company. As soon as I eliminated those foods, my inflammation calmed and I could raise my arms above my head (literally was in too much pain previously). I still struggle with my health but quelling the constant inflammation has allowed my gut to heal.

In Topic: My Heart

01 August 2014 - 07:28 AM

My inflammation seemed to have been related to my lymph system reacting to foods added back to my diet. I thought back to when I got sick and tried to eat only foods that I had not eaten during the coarse of my illness. I found new foods and ate them. It seems to be working. If you know which foods you have antibodies to, you can stop eating them.

To move lymph, exercise is a good thing I have learned. I started with squats, sit-ups and push ups. I began a rebounding routine. In the summer I need to skip that at times. I garden and walk the kitchen to freeze the produce.

I've been doing testing for irregular heartbeats this week. Same kind of thing, feeling butterflies/bubbles in my chest. Wore the Holter Monitor for 24 hours and it confirmed I have some irregular heartbeats, about 10% of my beats are "off". Since I'm also recently diagnosed with Celiac and Sleep Apnea, my Dr. wants to wait to start any meds, beta blockers, to see if going off gluten and getting better sleep help. I am tired ALL the time. I wish I could sleep for 12 hours...but even then, I probably would still be tired. They decided to check me when my heart rate was 35 while doing my sleep study. With my Monitor, my heart rates were between 40-81, with activity, walked about 5 miles during the day with it on, including climbing several flights of stairs.

I'm not sure where you live, but when you have multiple conditions, it might be worth a trip to Mayo to have everything checked out at once. My endo discovered my Celiacs during a "lets just make sure" test order. They will check everything, run tests you probably have never heard of and try to get to the bottom of things for you. It's an amazing place and I just can't recommend their medical model enough when you have multiple issues. Typically they check you in on a Monday morning and you will get a physical and discuss your history and reasons for being there. They will make recommendations about testing and other dr's to see. Usually you spend an hour or so doing that. Then they do the actual physical exam and if they find something else, etc. they add that. By the time you are dressed and ready to talk to the dr again, you have a multi-page itinerary for your next several days with your lab work, dr appointments, etc. on there. Appointments are added and deleted during your stay as necessary. I"d suggest starting with an appointment with the endocrinology department, mainly because they act at a "primary" doctor and since your endocrine system may be suspect, you have to start somewhere :D. During my visit I've met with my endo, 3 GI dr's, 2 dietitians, did a sleep study, met with the sleep team to learn about using a CPAP (which has helped a lot), had 7 pages of labs done, an endoscope, bone density testing, cardiology consult......you get the idea :D. Good luck!!!

Thank you! I wish I had gone through Mayo years ago when a friend of mine recommended it. At the time, I was too ill to figure much out. Looks like the closest one is in Arizona. My doctor is waiting to be certified by Mayo and I assume that means certain testing will be available to her. I had so many doctors at one time who couldn't figure much out and all private practice. It would have been nice to go through a systematic process with a team approach as it sounds like Mayo provides. My cardiologist was going to have me wear a holter. Beating my chest 3-4 xs a day, as odd as it sounds, is raising my heart rate and BP so she wants to see how that pans out.

Interestingly, my doctor sent me home with an at-home sleep test a few months ago. You just motivated me to do it! There are a few more tests she's going to run in the next week. She wants me to push over the hump (employ mind/body healthy practices). She has also referred me to a naturopath who she hopes can help me with reactivity.

I received my bone density test results yesterday and must begin weight bearing exercises. It's tricky avoiding the heat and the "boom boom" gym across the street would send me to the ceiling. Weightlifting never steered me wrong (an old love affair) and so will start with some dumbbells at the house. This should motivate me towards light cardio.

Last night I drank some adaptogen tea that was very relaxing and calming to the nerves. I'm going to research it more. The only thing bothering me right now is my elbow because I slept hard on it all night.

You guy's support really helps. :)

In Topic: My Heart

30 July 2014 - 05:02 PM

Thank you for your replies everybody.

My cardiologist says I have a mild-moderate leak in my tricuspid valve that needs to be monitored. I'm full of symptoms right now and seeing my regular doctor tomorrow. Don't know if the summer heat plays in (and I'm sure stress does) but it feels like I have hot stickers rattling through my body. It's truly shaking me down. I am having difficulty turning down the internal heat and have become fearful of it. I'm rubbing my thymus, drinking cucumber water and sarsaparilla tea. I put my feet in water and am cooled. I am eating every three hours to reduce stress to my adrenals. Those hot stickers go through my heart and I'm concerned about inflammation. It feels like something I should get under control immediately. Saturday my head felt like it had fallen asleep and I was so scared from the symptoms, I was in bed all day (that was before getting my echo results). It makes me wonder if I have another AI or if I'm having adrenal issues. I have no idea.

Most of all, I feel desperate to reduce the inflammation in my body because I know it's not good for the heart. I had reintroduced some intolerant foods in March and it's been downhill ever since. I am back on my safe foods only but am having symptoms with some of those now. Any suggestions for reducing inflammation would be appreciated. It feels crucial.

*Edit: And no, I did not shoot up with street drugs. That previous cardiologist told me not to shoot up with street drugs and I'd be fine. No follow up. No nothing. What a jerk.

In Topic: It's Not Insomnia

26 July 2014 - 11:18 PM

That's so good to hear :) I can't wait for normal!

In Topic: How To Deal With Servers Who Don't Think Celiac Is Real

06 June 2014 - 07:35 AM

I stopped eating out until getting in better control of this thing. I haven't been glutened this year *knock on wood* because, with two lucky exceptions, everything I ate, I prepared myself. It's getting easier to speak up for myself the more I've healed (and with experience). Currently, I let my husband go to battle for me once I begin stuttering but that's happening less and less as I become stronger. He is gluten intolerant and doesn't have as severe a reaction but, because of me, his reaction towards the restaurant is severe when they serve him gluten. As he goes to restaurants with friends and business associates, he educates along the way. Hopefully, he's clearing a path as he doesn't mince words ;)

Someone on here says she only goes to fine restaurants because the chains aren't always well-trained (or trained at all). Whenever someone gives me a cavalier attitude, I pass on the meal. I've eaten a little something a few hours before going out with others (with snacks in my purse for later). That way, I'm fed and, if it feels safe to eat in a restaurant, I still have room to make that decision too. I've also gone ahead of time to talk to the manager and can usually get a good sense from that. It's getting easier to tell who understands the seriousness and who doesn't.

Use the words "severe celiac" (it elicits a more serious consideration) and there are also restaurant cards to print: http://www.celiactra.../cards/english/

I haven't used the card. Like I said, but for a few exceptions, I stopped eating in restaurants until my gut has had more time to heal.