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Feeling disheartened

Katsnkids
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Katsnkids Rookie
Katsnkids
Posted

 Im newly diagnosed and  aysystematic.. although, I did have symptoms, they were just relatively mild and life long (I’m 40) I assumed they were normal!!! I was diagnosed in May and have tried to be gluten-free since.. after a couple of months I noticed a massive change.. tons more energy, better skin, and my runs became faster and easier! (I’m a runner... not the other type of runs ?) but I had this change for a month, and now I feel the same as I always did.. tired all the time.. I haven’t run, and I’m fed up.. I’m worried I have accidentally eaten something, or been cross contaminated.. but without my family (and the children I childmind) becoming gluten free.. I can’t see how this is going to be avoided.. I try my hardest.. but could this change of energy levels be to do with this? I thought going gluten-free was a placibo to start with.. but reading some of the other posts on here,  I’m not sure! How do you guys all keep things so gluten-free with gluten in the house!! I have read the gluten-free help page here.. but it seemed so ott (sorry!) I never did it!! I use a dishwasher, have separate butter and have sadly reverted to squeazy bottles of condiments to avoid double dipping of crumbs! And I don’t use the toaster.. but I definitely felt a change.. a massive one.. and I was preaching to everyone!! But it’s all gone ?

  • 3 weeks later...
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jen22 Apprentice
jen22
Posted

Hi - have you had a comprehensive lab panel done?  Maybe there are other issues?  I would talk to your doctor about it.  It could be something other than Celiac.  

  • 2 weeks later...
LilyR Rising Star
LilyR
Posted
On 8/9/2018 at 4:02 AM, Katsnkids said:

 Im newly diagnosed and  aysystematic.. although, I did have symptoms, they were just relatively mild and life long (I’m 40) I assumed they were normal!!! I was diagnosed in May and have tried to be gluten-free since.. after a couple of months I noticed a massive change.. tons more energy, better skin, and my runs became faster and easier! (I’m a runner... not the other type of runs ?) but I had this change for a month, and now I feel the same as I always did.. tired all the time.. I haven’t run, and I’m fed up.. I’m worried I have accidentally eaten something, or been cross contaminated.. but without my family (and the children I childmind) becoming gluten free.. I can’t see how this is going to be avoided.. I try my hardest.. but could this change of energy levels be to do with this? I thought going gluten-free was a placibo to start with.. but reading some of the other posts on here,  I’m not sure! How do you guys all keep things so gluten-free with gluten in the house!! I have read the gluten-free help page here.. but it seemed so ott (sorry!) I never did it!! I use a dishwasher, have separate butter and have sadly reverted to squeazy bottles of condiments to avoid double dipping of crumbs! And I don’t use the toaster.. but I definitely felt a change.. a massive one.. and I was preaching to everyone!! But it’s all gone ?

I feel your pain and disheartened mood.  I found out I had a gluten sensitivity last summer.  I've had health issues my entire adult life, since a bad case of epstein barr virus at age 18.  So perhaps my fatigue and aches were gluten related?  But over a year ago the stomach raged up, and that is when I found out.  I am still not sure I trust dr's and their diagnoses though.  Mine did blood work, said it came back as a low positive for celiac. So then he did more bloodwork, and after that said I was not celiac, but gluten sensitive.  A rheumatologist I was also seeing said that fatigue and body aches are often the first signs of gluten issues.  

But I went gluten free last summer. It took a few months, but I started feeling almost back to normal with my stomach.  But then started getting bloat on and off and stomach distention on and off.  Lately I have been avoiding soy and corn also.  But still having some bloat on and off.  I think I recently got glutened, not sure how, other than in my own kitchen.  It is very hard and scary living in a house with people who eat gluten.  My family tries hard to be careful, but still, they forget things at times.  Like I had a wooden utensil (a gluten free one) soaking in a pan of water, and my husband then tossed in some gluten dishes with it.  I reminded him about it, tossed the wooden utensil in the trash, and just feel like I must come across as an annoying, paranoid nag to him. He says he understands, but I don't feel like anyone does. Except people who also deal with these food/health issues. 

Since being glutened recently, I decided to do an elimination diet. But it's so hard. I am so sick of eggs and plain chicken, I feel like puking every time I take a bite.  I tried some chicken sausage one day and it seemed okay.  I had it again yesterday,and felt stomach distention.  I don't get it.  I am having a really hard time finding connections in my food journaling. It feels like one day I can eat one thing, and be okay. But eat the same thing again, and feel symptoms.  I feel so lost. Today I really feel at wit's end and full of despair. 

I don't even want to go back to the dr's again.  I have seen rhuematology, neurology, and gastro dr's the past year and a half.  I had a fever for a year and a half as well, which finally went away.  Other than the gluten issue, I have basically been told they cannot find anything.  I do not fit into a little box.  I have some things in blood work like high Sed rate/inflammation, a few things like that. But nothing else in tests or CT scans or endoscopy that shows anything else.  Even had muscles and nerves checked for my weakness symptoms. I have had fatigue, weakness, and fevers on and off since 18.  I would always be told it  sounds like something autoimmune, but now with all the tests they have done, they say, no.  

I feel desperate today, and alone, and no answers.  Dr's never seem to help.  I am tired of the stress of expensive and unpleasant and nerve-racking tests with expensive bills that end up showing now help. I am glad nothing serious has shown up. But also no answers, so no help  

I guess I keep plugging away at food choices and food journals.  It is all my upper stomach, not lower.  But so far I am a mess.  I am getting so hungry, but don't know what to eat anymore. And can't seem to find rhyme or reason to what causes the bloat and discomfort.  There must be a food or connection I am not realizing yet.  Or I am just getting cross contamination gluten more than I realize in my own home.  How do you get your family to give up gluten?  It feels very unfair. And not sure they would even do it. But yet it's also unfair to feel I am never going to get better.  I am scared.  Today is a bad day. It's been a bad few months, but this week I feel so fed up. Eating a chicken sausage one day and seeming okay, then eating it another day and having problems.  What is it???  And what do people eat?  Again, I am so sick of plain chicken and eggs, I could puke.  And I used to love both of those foods.  I also seem to not feel very well on so much protein. I am eating some veggies and fruit, but not a lot.  I am not sure if the fiber bothers me right now. I am ready to give up. But yet I don't want to. I want to figure this out and feel better.  But it's very discouraging when you give up so much food, and still end up with symptoms.  I guess I give up the sausage now too.  I can't imagine it was the grapes or nectarine that bothered me?  But honestly, I have no idea anymore.  I am scared to eat, but obviously have to. Having chicken soup tonight, just chicken, celery for flavor, and some salt, and will drink the broth with some chicken in it.  Another thing I used to love, but now, ehh. It's getting boring.  

I feel so lost today I can't stand it. I guess all I can do is keep food journaling, work on the family being super careful, even though they already try.  Not sure what else to do. 

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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