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Anyone Else Have This?


Twister2

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Twister2 Contributor

Hi all, I am just wondering if anyone else has headaches with muscle weakness, difficulty concentrating and coordination problems. For the past few days I have had these symptoms and its beginning to scare me. I have not yet gone gluten free because I have not had my biopsy yet. My blood work was positive though. I am just wondering if this is part of Celiacs or something else!

Thanks! :)


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mommida Enthusiast

Yep. Had those symptoms. Went to the hospital for the headaches they were so bad. Had severe muscle cramps in my legs too.

Laura

darlindeb25 Collaborator
;) yup--me too, had those symptoms--i have had headaches all my life though so it is sometimes hard to determine if it's a regular headache, a gluten problem, stress--i do have the difficulty concentrating :( deb
Carriefaith Enthusiast

Yes, I have had headaches, muscle weakness, and difficulty concentrating. It's not very fun.

Guest missyflanders

Yup. My coordination and muscle pain and weakness was so bad they looked at MS, Carpal Tunnel, peripheral neuropathy, RA, lupus etc.

They found nothing. I feel it is hormonal because going on the bc pill helped but the only other thing that helped were several bouts with predinisone. I am almost to the point to look in further again.

darlindeb25 Collaborator
;) i keep reading the post in here and i do have to say that when i look back i do believe the worst i felt started just after taking the birth control pills--my ex wanted a daughter so much and after our third baby i decided i would go through pregnancy one more time trying for a girl--i was always sick when pregnant, by the time i found i was pregnant i had decided i didnt want anymore babies, that 3 were enough, but :P i was already pregnant with our 4th son and i was so sick the whole pregnancy, i was anemic the whole time and borderline gestational diabetes B) so after him i decided to go on bc pills--i got so sick with them and became pregnant with our last child--i cant say now that i was disappointed about having her :D --i finally had my baby girl and she was so precious :D --i have always told her that she was a wonderful surprise, never an accident ;) ---now when i look back, the bc pills may have been my trigger too, if not, they sure pushed me along--deb :(
Donna F Enthusiast

I had all those symptoms. For years we thought I had ms but the mri wasn't showing lesions - we were stumped. I could barely walk down the stairs or carry my son. The headaches were horrible. I couldn't bear the sun or any kind of heat either.

I went through that for years - sometimes it would subside, but then it would come back again. It all disappeared on the gluten-free diet - just a day into it I felt better immediately, and i've been fine ever since (aside from some gluten mishaps that send me to the toilet - a symptom i NEVER had BEFORE!)

-donna


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llj012564 Newbie

Ive been gluten-free since Feb04 and had all of those complaints and more. They did improve when I started the diet but I still find myself very fatigued all the time. I have to work hard at comsuming enough calories daily with the limited things I can eat.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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