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Sooooo Tired...all The Time!


kaki-clam

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kaki-clam Enthusiast

It seems as though I have made it through the "hungry all the time" stage, then on to the "severe cramping-three weeks on the couch crying" stage, and have now made it to the "so damn tired all the damn time" stage!!! it is all I can do sometimes to drive myself safely home from work. When I get home, I can't function..I literally sit on the couch staring at the TV, I don't know what is on, I can't make a meal or clean up after one if I do manage to make it. My arms ache, my body is sluggish...I can't comprehend things...I am in a haze.

I have been gluten free for 4 months now....every time I post on here, the reply is "it will get better" I can't take it anymore....it isn't getting better. I have been tested for other potential food allergies, diabetes, and other such matters, but other than the Celiac's nothing else is wrong with me. I see a therapist, he doesn't think I am depressed...I don't know what else to do or what else to ask the doctors to look at!!

I have missed so much work, and although I am covered under FMLA, I am taking this time unpaid. The smallest amount of stress causes cramping stomach pain....can anyone help, can anyone relate? Is this just normal Celiac's??? Help, I am at the end of my rope and the knot is coming untied!!


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Jestgar Rising Star

Allergy testing really isn't all that reliable. The beast way to find out if other foods are bothering you is by either keeping a food diary, or by doing an elimination diet.

You could start by cutting the biggies out of your diet - soy, casein, eggs, corn - and seeing how that makes you feel.

YoloGx Rookie
It seems as though I have made it through the "hungry all the time" stage, then on to the "severe cramping-three weeks on the couch crying" stage, and have now made it to the "so damn tired all the damn time" stage!!! it is all I can do sometimes to drive myself safely home from work. When I get home, I can't function..I literally sit on the couch staring at the TV, I don't know what is on, I can't make a meal or clean up after one if I do manage to make it. My arms ache, my body is sluggish...I can't comprehend things...I am in a haze.

I have been gluten free for 4 months now....every time I post on here, the reply is "it will get better" I can't take it anymore....it isn't getting better. I have been tested for other potential food allergies, diabetes, and other such matters, but other than the Celiac's nothing else is wrong with me. I see a therapist, he doesn't think I am depressed...I don't know what else to do or what else to ask the doctors to look at!!

I have missed so much work, and although I am covered under FMLA, I am taking this time unpaid. The smallest amount of stress causes cramping stomach pain....can anyone help, can anyone relate? Is this just normal Celiac's??? Help, I am at the end of my rope and the knot is coming untied!!

My roomie has had similar issues--as I have too in the early stages especially. What we had to do was to figure out what our other food sensitivities were. You can't just get tested for this. You have to figure this out yourself.

Go on a simple elimination diet. Make a food diary and notice when you get messed up. When one has celiac, it is very likely one also gets leaky gut syndrome due to the damaged villi, esp. at first. Thus its important to remove common allergens like potatoes/tomatoes/peppers, nuts, milk products (though some can handle plain organic yogurt), soy, beans, and often some of the other grains -- esp. millet, buckwheat and sometimes corn and//or rice--as well as a multitude of pre-prepared foods and sugars of all kinds.

After you have been off these things and feel better, slowly add one thing at a time and see how you feel. Take your pulse and see if that is a factor as well as notice how you feel--and write it down. Obviously avoid those things that mess you up. In time you might be able to tolerate some of them, but it often does take time.

Now you say what to eat?? Its easy enough to prepare your own simple foods like green vegetables with squash and roots (though not potatoes!). Initially after you feel better add chicken or fish or some other easy to digest protein and see how you do. With the protein you might need to take pancreatic enzymes. You might also want to consider taking bromelain/papain or simple plant enzymes to help your digestion.

Marshmallow root and/or slippery elm can also be a great help by soothing and healing the intestines--either as capsules or as a gruel.

Its a bit of trouble, but not nearly as bad as feeling awful all the time. Good luck!

Bea

PS--a bit of advice--the more nearly you eat whole foods rather than processed ones and eat less grains overall, the more likely you will feel better faster and longer. Its also great for one's health in general. This is after all more nearly like most people ate thousands of years ago--which is what our bodies are adapted for--rather than the current additive, starch and sugar laden diet that is now so popular.

Ahorsesoul Enthusiast

I agree about the food journal. Also start double checking everything that goes into your mouth. It really sounds like cross contamination to me. You shouldn't feel this terrible.

My dd was having problems for awhile. We finally figured out she was drinking root beer at work that was not gluten free. So it could be something that you would not even consider has gluten hidden in it (and shouldn't!).

When you first went gluten-free did you cut out dairy and soy? If not, your intestines may not have healed well enough for you to feel better.

Somethings to consider:

I have to use gluten free personal products so you might want to check your toothpaste and such. Is your kitchen gluten-free? Are you eating in restaurants that may not really be serving gluten-free items? I will get sick from one tiny crumb of toast hiding in the butter. Are you feeding animals glutened food? Did you stop using things in your kitchen that might have hidden gluten: wooden items, plastic items, toxic toaster/blender and coated pots and pans? Do you chew gum or use breath mints. Are you kissing someone who isn't gluten free? Some people can't do this unless the other person has washed and brushed. Maybe it a combination of foods eaten together, here is where your food journal would help you see a pattern. Are your medications all gluten free?

I know you can find the cause for your distress! We are here to help you.

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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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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
      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.
    • AlwaysLearning
      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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