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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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    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
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    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
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