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Celiac Disease Effects

Celia the Celiac

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Celia the Celiac Apprentice
Celia the Celiac
Posted

I haven't been on here in forever! Everything's changed. I had to go in and find my password it's been so long lolol

Well, this is the deal....

I don't really feel very comfortable laying everything right now...but I'm having major bloat issues...if you know what I mean. When I say major....I mean....I'm very embarassed to even go to work tomorrow because something happened...that I had no control over...I don't want to spell it out for you guys. I'm practically in tears. Why have I been cursed with this poop! And on top of that...my stomache's stapled and I have stomache dumping syndrome. I'm starting go get very very depressed over all this...

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mftnchn Explorer
mftnchn
Posted

Celia, you didn't mention how your gluten-free diet was going--did you fall off the wagon so to speak, or is it possible you got some inadvertent exposure to gluten? Any changes lately like new medication that you haven't checked?

So sorry you are going through this awful experience.

How long have you been gluten-free? Some people here develop other sensitivities too.

Celia the Celiac Apprentice
Celia the Celiac
Posted
  • Author

I was diagnosed with Celiac two years ago. I've ben gluten free for about a year. We all know it's very hard to stay gluten free and have probably been exposed in some way or another. My stomache bloats so bad at times I can bearly breathe. I'm from Texas. You know, the South. None of the gastro doctors around here know much about Celiac. When I was diagnosed, my doctor just said don't eat wheat barley rye or oats. I mean....that was it. No....this is what's going to happen if...no...the reason you have osteoporosis is because you have celiac...no supplement info...nothing

lizard00 Enthusiast
lizard00
Posted

I am so sorry to hear things aren't going well. :(

My first suggestion is going on an elimination diet- eating only fruits, veggies and meats. No dairy or soy, especially. Those seem to be as common a culprit as gluten.

The second is- if that seems too overwhelming, keep a food journal. Be totally specific about what you ate, even if it was one little piece of something. And keep track of the rxns; sometimes things can be delayed. The important thing is to catch the pattern and do away with the further irritants.

Oh yeah, don't feel bad. I have 3 medical schools around me (one well known around the country)- do you think any of the doctors around here that I've been to know anything about Celiac... yeah, not so much.

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I'm right there with ya! I was diagnosed in Georgia. It only took 3 or 4 yrs with active problems to by chance get the right dr, and it still took forever to figure out the problem was Celiacs!

I have had problems in the past and only figured it out after checking every single item in the house! Cleaners, soaps, lotions, bath stuff, make up, food, drinks,....huge phone bill! One company makes a small change and we pay dearly! Maybe something else is getting you sick too?

Have you looked into a kinesiologist (sp?)? They might be able to help find a way to reduce the bloat and get your system under more control for you. It was a huge help for me

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    • AlwaysLearning
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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