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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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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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