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mainesgem

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mainesgem Rookie

Hi there all,

I am so thankful for this board!!! With out it I'd be in a world of trouble!

Thanks so much for all of your insight into this problem.

I have been having "on" and "off" days since I started this gluten free life exactly a week ago.

Today is definitely an "off" day.

I have been having diarrhea and I am sssoooo tired!!! I am so exhausted that I can barely

keep my eyes open. I am having trouble typing because I can't concentrate.

My kids want mama and I just wanna crawl in a hole and sleep. I would call my husband home

from work but he has no more vacation days. We can't afford him taking off any work

right now-holiday expenses.

I am so done with being frickin tired all of the time. When can I be normal again??? I just wanna

be fricken normal!!! I just want to be able to get through a day with out a stinking nap!!!

Will this ever happen-probably not! I am cursed to exhaustion for the rest of my days!

Well anyway....

Had to vent! Baby crying: WWWAAAAHHHHH!!!!

I know I am slowly getting better-I have been feeling a difference until today. Why can't this be overnight?

My instant gratification desire is kicked into high gear.

Sorry for the Pi**ing and moaning...but I had to do it.

Jenny. :(


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Ursa Major Collaborator

Jenny, sometimes being able to vent helps. So, vent away. I know how you feel, I raised five kids feeling like I couldn't even get out of bed. At least your husband understands that you truly are feeling exhausted. Mine would just call me lazy.

mn farm gal Apprentice

Sorry to hear you are having a bad day Jenny. I had terrible trouble with this until I see a NaturalPath doctor. She put me on a machine and it told her what my difficencies were. I was low with 17 minerals and vitamans. Some were very low and took a while longer. She put me on 2 things the first time I was there that had all of these areas and my health just got better and better. Of course you know this is not going to happen overnight. But I did see a fairly big difference in just a couple of weeks, and then it is just maintance once you levels get to normal. just give it some thought, it may be more than just going gluten free at first.

DingoGirl Enthusiast

Hi Jenny.....it does suck being that tired, doesn't it? I feel your pain as I was there. I am almost one year gluten-free, but I was sleeping at least 16 hours a day or more before getting my diagnosis. It took about a week to feel better - I remember feeling as though I'd come out of a fog - - but there have been many ups and downs. Now, I am almost never that tired, usually plenty of energy to get throgh the day - unless I've been glutened, and then it causes some insomnia, and pure exhaustion the next day or two.

Just wondering, have you gone over everythign with a fine-tooth comb and made absolutely sure you're not getting gluten somewhere (cosmetics, cross-contamination, etc)? the diarrhea sounds like a gluten reaction....

just keep at it, it does take a while!

hugs -

Ursa Major Collaborator

Jenny, both Susan and farm gal have good suggestions. Have you been tested for vitamin and mineral deficiencies? You might be very low in some key nutrients, which could cause exhaustion. You especially need to be tested for iron deficiency, vitamin B12, calcium and magnesium, potassium, vitamin D and K........and I'm probably forgetting some.

Have you bought yourself a new toaster? Did you replace any personal care products that contain gluten? Susan is right, if you have diarrhea, you probably got gluten somewhere. Also, you might not be able to digest dairy right now, are you consuming dairy? If yes, it might help to eliminate it for now.

Yenni Enthusiast

I was super tired like that too. It lasted a longer while for me actually. I had been tired for years but this last spring I was so tired it scared me. My husband started to read about Celiac and I eventually got tested at EnteroLab and it was positive.

I think the fact that I went for 4½ years feeling sick and with lots of stomach symtoms and brain foog makes it take longer to get back on track.

Like others have mentioned before, make sure to check vitamines, don't use plastic stuff in teh kitchen that has been used with gluten, check your shampoo, soap... So you don't get glutened still.

Were you checked for other stuff but gluten?

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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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
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      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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