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Newly Diagnosed And Hoping To Learn From You All.

kerrygirl15

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kerrygirl15 Newbie
kerrygirl15
Posted

Hello,

I am 22 and newly diagnosed with celiac d.I went into hospital two months ago due to severe vomiting and diarrhoea which they initially thought was some sort of tummy bug.It turned out to be pnemonococcal septicemia which turned into septic shock.I was in icu on a ventilator for weeks,had to be resuscitated,it was awful.Anyway I'm alive now and home!While in hospital they tested me for c.d.bloods were positive,biopsy positive also was severely anemic,hyposplenism and leaky gut.I have been on gluten free diet for a few weeks now and getting on well.I'm really hoping that the gluten-free diet will make me feel well again.I've been sick all the time for the last few years.Anyway,I'm hoping I will learn a few things from everyone here.

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Jays911 Contributor
Jays911
Posted

Welcome. You will learn a lot following thIs forum. Glad you are feeling better.

mamaw Community Regular
mamaw
Posted

hello & welcome, lots  of  good advice  here.. Glad  to hear  you  are doing  better  it  sounds like  you  had a really rough  go of life for a period of  time....

nvsmom Community Regular
nvsmom
Posted

Welcome to the board!  :)  

 

It sounds like you are on the right track now.  I hope you have a speedy recovery and are well on your way to healing by time the summer winds down.  Best wishes.

kerrygirl15 Newbie
kerrygirl15
Posted
  • Author

Thanks everyone.

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    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      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
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • 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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