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Member Since 12 Jul 2012
Offline Last Active Apr 20 2015 09:17 PM

Topics I've Started

New Nutritionist Is Helping Me

15 March 2015 - 11:40 PM

I finally found a healthcare professional who is helping me get better!!! She's the Nutritionist on the Celiac/GI team at UCLA (but I see her through her private practice for a lower fee). She has Celiac herself (I'm NCGI) and was willing to do sessions over the phone until I was well enough to make it into her office. Maybe she could do the same for someone who lives too far away to see her in person.


First she resolved my severe C problem which seems like a miracle after struggling with it for 5 years, (and after seeing 5 different Doctors). She thought my C problem was helping to cause my food intolerances, not just the other way around.


Now she's helping me re-introduce new foods into my very limited diet one at a time, in very small amounts (like 1/4 cup at a time). She explained that eating a normal size portion of a new food can cause a reaction just because my body is no longer used to it, when very small amounts to start can be ok, then can be gradually increased. So, I'm testing foods one at a time, and some of them are working out for me. Lots more testing to do, but each new food I can eat gives me a little more freedom.


Never give up... there is always answer :)

First Party Bringing My Own Food

15 March 2015 - 10:45 PM

Today was the first party I've been to bringing my own food, and the first party I've been to in 3 years - that's how long it's taken for me to feel well enough to go to a social event since my food intolerances began - quite a milestone!!! I've been seeing a new Nutritionist who has helped me get there. I'm going to post more info about that in another topic.


Now I understand what all of you were talking about when you shared your party stories. The host, my friend (who knows about my food limitations) couldn't seem to understand when I turned down everything she offered me. She was even surprised when I didn't want a piece of her homemade cake that had several things in it that I don't eat - gluten/grains, dairy, eggs, sugar, etc. She seemed hurt that I couldn't enjoy something special she had made, it was hard to disappoint her.


She was uncomfortable seeing me not eating or drinking anything, so I took out the water and food I brought. Then people were upset that I was eating out of plastic baggies. It didn't bother me. I was surprised that everyone was so concerned, I'm so used eating with no frills.


Next time I'll bring my food in containers or put it on a plate before I eat it, so the others will feel more convinced that I'm enjoying myself :) Or if anyone has suggestions on how I can blend in better next time, and not stand out so much, I'd love to hear them.

Is A Celiac Dx Necessary?

17 September 2014 - 02:44 PM

I already know I'm gluten intolerant. I'm wondering how important it is to have an official Celiac DX, and I could use some opinions.


I just went to see a new GI at UCLA who specializes in Celiac/Gluten Intolerance to address my ongoing chronic C that is closely related to the multiple food sensitivities that started after I went gluten-free 2 1/2 years ago. I'm still sick and figuring out what I can and can't eat.


Of course this new Dr. thinks it's important to know if I have Celiac or not. I asked him how Celiac treatment would differ from NCGI treatment. He said Celiac is an autoimmune disorder with inflammation which makes it more serious, and it would be more important to monitor my vitamin/mineral levels to guard against bone loss, Vit D deficiency, Thyroid problems, etc.


I knew all of that already from what I've learned on this site and my other readings. So far he's given me a Celiac Genetic blood test, but I don't have the results yet. Will that test tell me anything?


I've always said I won't do the "Gluten Challenge", and he hasn't asked me to - yet. Honestly I don't think I'm well enough to do it. I have enough trouble getting what I can eat in my body… and out again (sorry if that's TMI)


Does anyone think doing the "Gluten Challenge" and getting a small intestine biopsy is worth it for a certain DX. Or can I continue to monitor myself and get tested for deficiencies/imbalances as if I had Celiac to be on the safe side?


Is it necessary to know for sure if I have Celiac? I'm going to continue being gluten-free regardless, and continue taking extra good care of myself.

Life Savers Candy Made Me Sick

21 August 2014 - 02:30 PM

I know, Life Savers making me sick, it's ironic… I had a moment of weakness in the grocery store.

I had some hard candy before that was made in Germany that I ate sometimes, just sugar, a few ingredients, never had a problem. I can have a small amount of sugar and it doesn't bother me… but I ran out of those and nothing at the grocery store was available without Corn Syrup. Pretty sure that's what got me, unless it was the artificial coloring, but I doubt it. I hadn't had anything with corn in it for over two years.


Now I'm sick again, and I was doing so well. What I still don't quite understand is why my digestive system is still SO sensitive. I stopped gluten over two years ago, and since then I've had trouble with one food after another. I think it's because I still have never had a long enough time just being well without another flare up - I assume it's leaky gut, but it's so touchy, like it has a hair-trigger. I don't think my intestinal lining has had a long enough chance to heal in one stretch.


I've improved a lot though lately. I started to get much better as soon as I discovered the most recent thing that was causing me digestive problems: for me histamine was a big piece of the puzzle. I have a diet now that my body likes which is HUGE progress, as long as I don't add one single different thing to the equation. My motility is much better, so I can eat more protein, so I'm putting on some weight.


Hopefully it won't take so long to recover from this mishap… fingers crossed. I had just gotten over the last fiasco when I tried one omega 3 fish oil capsule. It took 2 1/2 months to get over being sick from that. It has taken that long to get over each thing my body has a bad reaction to since the beginning.


I'm seeing a new GI soon at UCLA who is supposed to know something about functional digestive disorders - my last GI was useless. I would feel better if I understood better what exactly is happening in my body! I like to understand things. If I find out anything useful at the new doctor appt, I'll share it.


I've been too sick to write much on here the last few months, but just knowing I'm in good company helps a lot, so I'm glad to be back on here… it's lonely out in the world of people who don't understand this stuff.

Colonic For Severe Constipation

15 June 2014 - 07:34 PM

I wanted to share my positive experience getting a colonic a couple days ago. I get them periodically and they always help me tremendously. I have tended toward C for several years but I never had such problems until my food intolerances started... gluten was only the beginning for me. Now as I determine which foods are safe for me, I get severe C whenever I ingest something my body really doesn't like, then I have trouble getting things going again.


I went in for my colonic feeling like I wanted to die and looking terrible, and left feeling so much better, as I always do. The next day I look so much healthier. Today no more dark circles under my eyes and acne nearly gone.


For me, I am not able to get this result any other way, I've tried everything. I believe a healthy gut is one of the most important things for good health, and that a toxic gut causes illness. For anyone who can maintain healthy movement, that's great, but for anyone who still has trouble after trying absolutely everything, I wanted to share my experience.


When I do have an occasional colonic I always double up on my probiotics for the day. I have my usual dose in the morning, then I repeat it at dinnertime.


I realize this can be a controversial subject and everyone has their own opinion. From experience I can tell you that it's just plain water flowing into and out of the colon to cleanse any toxic buildup and any blockage. I hope and I believe that eventually my colon will be functioning normally again and can do it's job completely on it's own. Until then, this has been a huge help to me when nothing else works.

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