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Hello From Florida


Candice4

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Candice4 Newbie

Hi! My name is Candice and I'm 40yrs old. I live in Florida. Even though I had a basic idea of what Celiac Disease is, I never once considered it might be my problem and sadly neither did any of my doctors. Last Feb. I had a complete physical and was found to be in excellent health. When I talked with my doctor about my worsening stomach problems (again), she told me with my history of IBS and colitis to just go ahead and take TWO prilosecs, if one wasn't enough. I did this and by August was conviced I was dying. I actually became afraid to seek further help. I wasted from 130 lbs to 100 lbs. I honestly thought I had some form of cancer and was dying. Everything I ate went straight thru within minutes and I had bouts of such severe pain that I became afraid to eat.

When I found this website and scanned thru the list of symptoms it explained my whole life. It was a terrifying sense of relief.

I learned that people (even friends) can be cruel, whether out of concern or whatever reason, I don't need to be bombarded with how BAD I look. I finally broke down and saw a gastroenterologist and had a colonoscopy and an endocsope which revealed nothing. I honestly thought I was going crazy. It was the day after the scopes that my Mom called and mentioned that a friend of my nieces had the same symptoms and was diagnosed with celiacs. When I asked the doctor about this he said it was a possiblity but that he already had the biopsy's back and were normal, but that he had not taken a biopsy from the right area to test for celiacs. (not sure how that works).

In the meantime I put myself on a gluten and lactose free diet. (lactose has always been an issue). I did manage a small weight gain, but I cannot manage to keep it on. I have not been officially tested. When I asked the gastro about testing he simply said "what good is it going to do, if its positive what are you going to do different, and if its negative, what are you going to do different?". I'll be seeing my regular doctor on the 25th and I'll see what she says.

Last week I found a new heatlh food store and an abundance of new products and got so excited, in my haste I forgot to look for "lactose free" as well as gluten free and OOPS. Have had a rough couple of days as a result.

I'm just trying to find and meet others with this condition for tips and options. Anything that will help me avoid making mistakes and that can help me regain my strength and health. I do feel better, but am still tired and very weak. I have lost a lot of muscle mass and am very wasted. I'm 5'3" and a size 0 or a little girls size 14.

I have a wonderful and supportive husband, however he gets very frustrated trying to shop for me. I'm Mom to 4 wonderful children and I raise and show miniature horses.

Thats my story and a little about me.


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Becci Enthusiast

Hey there, I am Becci... I am also from FL (Green Cove Springs to be exact)...

I also lost thirty pounds out of the blue. I was kind of freaking out. I was sick everyday and couldn't make it any better. My doctor finally said that I just have to live with it, because she couldn't find anything...

And now, here I am!

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
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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
      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
      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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