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Symptoms And Waiting For My Test Back!

MrsC

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MrsC Rookie
MrsC
Posted

Hi there, not sure where to start...

I am waiting for blood tests back that were drawn yesterday for Celiac Disease. Since my baby was born last year in June these are some of the symptoms that I have been having:

Muscle Pain

Muscle Weakness

Fatigue/Exhaustion

Pins and Needles in Arms and Legs

Burning in Shoulders and Hips

Extreme Joint Pain at Night

Really BAD Rashes that are SOOO ITCHY

Dry Skin

Frequent Bowel Movements every day

Painful Belly Gas

Here is what I HAVE been diagnosed with: Thyroiditis (At first Hyperthyroid, then Hypothyroid. So Now I am on Synthroid everyday.)

I have gotten the run-around from my bloodwork for so many things being negative: Lupus, Lyme Disease, Rhuemetoid Arthritis, Sed Rate, ANA, etc.

I have also been to the Neurologist every month since January and had Brain MRI scans, and a negative EMG study on the arms! I can't take this anymore. My primary doctor and neurologist both are basically stumped.

My sister is an Emergency Medican Technician on the ambulance here and suggested that I see a doctor in the ER that she knows is quite good - he is the one that suggested the tests for Celiac Disease, and also put me on Prednisone to see if it would help with the pain that I am in and clear up any inflammation (that's not working by the way!) Can that alter my blood test? I really hope it doesn't.

My primary care doctor appointment after the ER visit was when she told me to go on gluten free while we wait for the bloodwork. So I started this morning.

Anyway - thanks for reading if you still are - I know this was long....Does this sound like Celiac Disease to you?? Any thoughts appreciated! Thanks.

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MrsC Rookie
MrsC
Posted
  • Author

I should also add that when I was 6 months pregnant, my father died of a sudden heart attack at 57 - I went into pre-term labor 4 weeks later, and was on bedrest until my son was born via emergency C-section in June.

Could stress have brought out the storm here?

mouse Enthusiast
mouse
Posted

Yes, stress can trigger the storm. So can operations. It sounds like it could be Celiac. I am glad that you found someone who would run the tests on you. Let us know how the diet goes for you. Remember you need your own separate toaster and do not cross contaminate. No letting the husband put his knife in the jar several times while putting something on his bread. The diet is not bad once you get the hang of it.

nettiebeads Apprentice
nettiebeads
Posted
I should also add that when I was 6 months pregnant, my father died of a sudden heart attack at 57 - I went into pre-term labor 4 weeks later, and was on bedrest until my son was born via emergency C-section in June.

Could stress have brought out the storm here?

Oh yeah - mine showed up after a really really nasty sinus infection. And lots of everyday stress. Anyhow, how are you while gluten-free? Some show improvements almost immediately. You might want to exclude dairy also, for now. If it is celiac, then the villi are damaged and that makes it really hard to digest dairy. You'll be able to reintroduce it in about three months. As Armetta said, watch for cross-contamination. That seems to be the bigger issue than the diet itself in trying to stay healthy. Keep us posted!

Annette

MrsC Rookie
MrsC
Posted
  • Author

Thanks for the replies!

I have been on gluten free now for 2 days and I actually feel a slight improvement in my energy. I hope it all gets better from here!

nettiebeads Apprentice
nettiebeads
Posted
Thanks for the replies!

I have been on gluten free now for 2 days and I actually feel a slight improvement in my energy. I hope it all gets better from here!

Glad to hear that! Don't mean to scare you, but you need to check toiletries (nasty old wheat starch and wheat germ oil and aveno (oats)) run rampant there. Also any otc - I was being healthy, I thought, by taking vitamins. Turned out when I finally read the fine print on the label that they had gluten in them! Sheesh! Don't be surprised if it takes you forever now to do the grocery shopping. All that label reading.

Anyhow, keep up the good work and here's to more improvement!

Annette

MrsC Rookie
MrsC
Posted
  • Author

I have been starving between meals since going gluten free on Weds. Is that normal?

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Lister Rising Star
Lister
Posted

yeah its pretty nomal what i had to do is instead of eating 3 meals a day i eat 6 small meals a day, well right now im only eating 2ice a day but thats just because i am not getting hungry, but either eat small meals or snack on lite foods like carrots

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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? 
    • Wheatwacked
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      By Wheatwacked · Posted

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    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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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