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How Do You Normally Feel?


sharkmom

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sharkmom Apprentice

I have been gluten-free for a few weeks now. I have been careful not to have any cc, but Im pretty new to this. At the same time finding out about my food allergies, my thryoid was on the low range of normal and my medication was readjusted. Just came off of 4 days D, 1 day no bm, yesterday and today loose stool. I have days, like today, being tired and push myself to be active. Other days I feel just ok. I just had a B12 shot, but didnt notice a difference. I hate feeling sick and I dont know if it is a gluten reaction or something else. I want to feel good again and have the energy I had 6 months ago. Im wondering if Ill ever return to feeling good again and what I need to do to get there. I guess I should have named this: Is the way I feel common? I should add that I feel more fatigued since going gluten-free.


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tunibell Rookie

I've been gluten-free for 5 weeks now (diagnosed via biopsy last month) and I totally hear you - I feel more tired now than I did when I was happily munching on Autumn Wheat cereal. I actually felt systemically great when I was diagnosed; what drove me to the doctors (all four of them) was just a tight, dull stomach ache and a mild burning sensation in my abdomen.

I, too, am still having symptoms, although they are improving. I got hit with a nasty cold last week, and that was definitely a setback. I think this just takes time. I personally found all the "in-24-hours-I-felt-better-than-I-had-in-my-whole-life" stories depressing - that definitely has not been my experience!

foodiegurl Collaborator
I was happily munching on Autumn Wheat cereal. I actually felt systemically great when I was diagnosed;

Just had to chime in...I loved that cereal, my favorite!

I also felt great when diagnosed, and now have to be very careful about what I eat, or my tummy reacts :(

sharkmom Apprentice
I've been gluten-free for 5 weeks now (diagnosed via biopsy last month) and I totally hear you - I feel more tired now than I did when I was happily munching on Autumn Wheat cereal. I actually felt systemically great when I was diagnosed; what drove me to the doctors (all four of them) was just a tight, dull stomach ache and a mild burning sensation in my abdomen.

I, too, am still having symptoms, although they are improving. I got hit with a nasty cold last week, and that was definitely a setback. I think this just takes time. I personally found all the "in-24-hours-I-felt-better-than-I-had-in-my-whole-life" stories depressing - that definitely has not been my experience!

Well, at least I know I am not crazy. My family can't understand how I seemed fine and now "all of a sudden" I am sick. This whole thing came out of no where. I just went to a preventive/holistic MD and he did a few tests and all of a sudden a bunch of food allergies. I just had a celiac panel done and waiting results. This has been very depressing and wish it was just a bad dream and I would wake up!

linda7276 Newbie
I have been gluten-free for a few weeks now. I have been careful not to have any cc, but Im pretty new to this. At the same time finding out about my food allergies, my thryoid was on the low range of normal and my medication was readjusted. Just came off of 4 days D, 1 day no bm, yesterday and today loose stool. I have days, like today, being tired and push myself to be active. Other days I feel just ok. I just had a B12 shot, but didnt notice a difference. I hate feeling sick and I dont know if it is a gluten reaction or something else. I want to feel good again and have the energy I had 6 months ago. Im wondering if Ill ever return to feeling good again and what I need to do to get there. I guess I should have named this: Is the way I feel common? I should add that I feel more fatigued since going gluten-free.

It took 5 full weeks for me to recover from a week of gluten. I was well and then convinced myself that gluten was not my problem (before my testing)...will never do that again. Everyone is different but please feel good knowing that every thing you are doing to improve your health adds up and it does take time. Sometimes when we start to feel good we forget what was hurting or bothering us...then one day you realize oh yeah, I don't have that bone pain anymore, or that fluid retention, or that profound and crippling fatigue...you will notice things and you will get better, hang in there...most of us have been sick for all of our lives with this, and it takes more than a few weeks for all of the repair that has to take place. Just keep taking care of yourself everyday. Rest and don't give up, you're doing the right thing. I had to quit soy, and dairy as well...you may have to do that too. Gluten is the worst culprit but it may not be the only one, I hope you start to feel better sooner than later...:)

Jonbo Apprentice
Well, at least I know I am not crazy. My family can't understand how I seemed fine and now "all of a sudden" I am sick. This whole thing came out of no where. I just went to a preventive/holistic MD and he did a few tests and all of a sudden a bunch of food allergies. I just had a celiac panel done and waiting results. This has been very depressing and wish it was just a bad dream and I would wake up!

I was the same way. I was relatively healthy (some previous surgeries, one involving untwisting my small intestine years before this came on), and then all of a sudden one day in December it starting hitting me and by late December I was going through hell everyday with my stomach. No one else here saw it coming either since I've been normal enough since birth food wise without this condition.

Since diagnosis in April, my normal for now (compared to before dx) is no abdominal pain but still mild distended stomach while it's adjusting. Eventually I won't have to see this every day but compared to the severe pain of before, I'll take what I deal with now.

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    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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