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I'm Done
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40 posts in this topic

Razzle,

Have you had any luck with digestive enzymes? (I really liked Enzymedica Digest Spectrum or Digest Gold.) The reason I ask is because fat malabsorption can be caused by pancreatic insufficiency. You might wanna give them a try if you haven't!

Hugs!

Laura

But do be careful what you take. I was taking PDA and it was fine but have since switched to Swanson's HCL. Same thing but just not quite as strong. Much cheaper though and so far so good. I have to avoid anything with Bromelain because that gives me horrible gas and stomach pains. And I foolishly tried Pancreatin which is something one might need with pancreas problems. Aside from the diabetes, I don't think I have pancreas problems and that stuff left me in horrible pain. I think it made me vomit as well but can't remember. Then I looked it up and discovered that it should only be taken if one has a known pancreas problem.

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Hi Razzle

Just a small comment ( and yes, I do understand how you feel) - I have in the last week discovered coconut water, sold in health stores. Read a mention of it on this forum.

It's fabulous :) and really seems to knock out cravings with a small glass. I find it quite sweet as well and very hydrating.

Nutrient rich and probably anti-candida too - worth a try.

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Wow Marc49. I find your post totally useless and disrespectful. Perhaps the fact that five days a week I spend a third of my day at work means I am a workaholic. The word obsession implies that I give unrelenting and undeserved attention to what is going on in my body. I only have one body, one life and when what is going on with my body impairs my ability to suffer this life, then it is 100% deserved attention. When what is going on in my body makes it impossible to provide myself safely with mmy most basic neccessity to survive (nutrients), it is gonna get my attention.

And not that it is truly a point worth discussing but I will humor you: there were plenty of times I decided that I would just pretend like nothing was wrong and it just resulted in a lot of pain and suffering and a cascade of torturous symptoms that sapped my ability to function or even breathe or remmemmber what day it was or spend time with my family. Maybe you're right, if I quit dwelling on it and instead decide to starve myself rather thhan think about how to feed myself I will feel better for a day or two.

Obviously you are looking to take offense at what I said when it was not meant in that way.

First off YOU start a thread titled "I'm Done."

Sounds quite positive to me.

Secondarily, I tried to show you what one test was about that you claimed to be unaware of, and then I went on to say what I HAVE seen in a few folks before.

One of my best friends almost drove himself insane looking at medical info.

Best wishes, and you will never see another response from me, so no worries. :)

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Marc49

First off the fact that the thread was entitled Im Done bears no significance to whether it was appropriate to come on a thread with someone who feels as if they want to give up saying that they are obsessed and implying that they were sick because they were obsessive about their health.

I already know what ANA is by the way.

Obviously you typed what you meant and posted it. I doubt the keyboard took over and forced you to type the words "when ANYONE obsesses on a health issue..." You then go on to express that if I do not think about it I might feel better.

I hope you did not mean to be offensive but you ought to be more careful with the words you type because I know for certain that I am not the only one on this forum who would take offense at someone implying that their sickness is in any way in their head or that they could think or unthink themselves to no longer being ill with the things they put in their mouth.

I started this thread to express how I felt like giving up trying to avoid all the things that make me sick not because I had decided to quit making myself sick in my mind.

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I kinda know what Marc is saying in a way. Just bear with me. I have had severe back pain for years and it was nearly all I thought about. I became obsessed and allowed it to control me. Not a good place to be. Believe me - I am a researcher to the nth degree, nothing wrong with it. But I took it to extremes. Now I refuse to let it control my life. Not saying you are at all. Just relating my own experience. :) Though I continue to suffer daily, I feel liberated from the firm grip it had on me.

ETA: That said, I strongly believe we must be our own advocates and learn as much as we can about celiac and other things that plague us. This can be as much a mental game as physical. At least for me. When I am preoccupied and busy with interesting things, my pain lessen. Distraction really helps me. So, I make sure there are tons of (good) distractions in my life. ^_^

Edited by love2travel
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What brand coconut water do you use Lady? I tried some one time and it was disgusting. Maybe it is because I used to live in Hawaii and know what fresh coconut off the tree tastes like idk

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Hi Razzell

I have Vitacoco and Cocofina.

Have never had it before and when I first tasted it thought Eeww! - slightly odd and rather sweet :blink:.

It must be an acquired taste because 24 hours later it was Yum! - give me more :D .

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Did someone mention fructose intolerance? Could be that. It's a common thing for us within 2 years of going gluten-free while everything heals. A total mind game to suss out, though, since its in, like, everything.

Try plain white rice as your only carb, no sweet things at all, and see if it helps. If it does, PM me and I can suggest some low fructose stuff and dextrose sources that would be safe. Sounds like you're close to that diet already, too.

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Did someone mention fructose intolerance? Could be that. It's a common thing for us within 2 years of going gluten-free while everything heals.

I haven't seen any info on that.

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Just do a search on the boards here. A lot of people say fructose gave them problems initially. But not most people for sure.

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Just do a search on the boards here. A lot of people say fructose gave them problems initially. But not most people for sure.

I think we sometimes forget that these boards do not represent the majority of Celiacs. Most of them are not on forums and boards.

So I think to state as a fact that "It's a common thing for us within 2 years of going gluten-free" is a bit misleading.

If you have read a good article about that, then we would love a link to it.

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Well, I'm not a doctor. And most folks go off gluten and do just fine. But if you want robust studies on food intolerances connected to leaky gut, I would also love very much to see them. I'm desperate for serious medical research into the subject. Until then, we have outlier anecdotal evidence. It's not ideal.

The fact is that fructose malabsorption issues are still not well understood, and their connection to the increased intestinal permeability brought on by damage due to gluten in undiagnosed celiacs has never been a direct subject of scientific research. I do wish they'd get in the ball with it, honestly. Until then we celiacs with odd problems like this are left to look to each other for hunches and advice yo go to our doctors with.

I'm taking my hunches to the Mayo Clinic next month for testing, and have sent away for genetic testing as well to look for other possible causes, since what I have is unusually severe (though two others here have told me they had the same going gluten-free). But I wouldn't have known where to start without folks here passing along their ideas and experiences.

All of which is to say, yes, I totally agree with you.

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What brand coconut water do you use Lady? I tried some one time and it was disgusting. Maybe it is because I used to live in Hawaii and know what fresh coconut off the tree tastes like idk

I like Amy and Brian Coconut Juice brand the best. Blue Monkey is second. If you consider it tastes like water, it is wonderfully sweet. However, if you are expecting soda like flavor, it will be a big disappointment!

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I think we sometimes forget that these boards do not represent the majority of Celiacs. Most of them are not on forums and boards.

So I think to state as a fact that "It's a common thing for us within 2 years of going gluten-free" is a bit misleading.

If you have read a good article about that, then we would love a link to it.

OK, started a new thread on that here: http://www.celiac.com/gluten-free/topic/99944-fructose-intolerances-what-does-the-medical-literature-say/

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If you have a dry mouth your food won't have as much taste, and dry mouth can be caused by vitamin deficiencies in a few of the B's and A. Vitamins take a long time to build back up if you're low, especially if you have damaged intestines.

Also, I could only find a local gluten-free buckwheat flour, everything else had cc.

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    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
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