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I'm Done

Razzle Dazzle Brazell

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Juliebove Rising Star
Juliebove
Posted

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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Lady Eowyn Apprentice
Lady Eowyn
Posted

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.

Marc49 Explorer
Marc49
Posted

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. :)

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

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.

love2travel Mentor
love2travel
Posted

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. ^_^

Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted
  • Author

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

Lady Eowyn Apprentice
Lady Eowyn
Posted

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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Chaff Explorer
Chaff
Posted

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.

kareng Grand Master
kareng
Posted

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.

Chaff Explorer
Chaff
Posted

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

kareng Grand Master
kareng
Posted

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.

Chaff Explorer
Chaff
Posted

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.

1desperateladysaved Proficient
1desperateladysaved
Posted

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!

Chaff Explorer
Chaff
Posted

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: https://www.celiac.com/forums/topic/99944-fructose-intolerances-what-does-the-medical-literature-say/

  • 2 weeks later...
cavernio Enthusiast
cavernio
Posted

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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Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

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      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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