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Victoria1234

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Victoria1234 Experienced
13 hours ago, Ennis_TX said:

Actually on a ketogenic diet, nothing but fats and protein no carbs, no fruits, no grains, no sugars. I consume massive amounts of protein and moderate fats. I am actually slowly putting on weight....but I am 127-129lbs and 5'11" I have less then 18% body fat. Once you hit ketosis you body burns fat for energy not carbs. So if you are late on a meal, forget a snack, or do not eat enough it eats fat stores first then your own body -_-. Bit brutal actually having to eat every 3-5 hours lol.    NOTE I am on this diet for medical reasons. I have recently learned I got UC so sugars/carbs cause flare ups. Celiac so no gluten, lactose intolerant...,,yeah .....On the bright side I recently found some great breads that are paleo with no carbs or grains then started making my own out of the same ingredients. No bloat starch free gluten-free bread, make my own cheesy garlic, and cheesy cheddar biscuits no grains....diets actually pretty damn good. I love I do not bloat, have so much energy. Just hate the expenses of eating all the nuts, egg whites, seeds, and fresh veggies.

I see! Wow, that sounds really restrictive. But you sound incredibly healthy. Thank you for the info. I will look to see if you've posted any of these great sounding recipes!

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Victoria5289 Apprentice
On 5/3/2017 at 1:53 PM, Victoria1234 said:

So in 2007 I started having constant abdominal pain. I had DH for years on my elbows, no reason given by doc other than "allergies". I had many tests done but no celiac panel. I was always anemic and constipated my whole life. I even had my uterus removed in January of 2008, seeking pain relief. The uterus was tested and was actually just fine,

Shortly afterwards we found out about celiac online and I went gluten-free....

i think it was February 2008. My pain immediately went away as well as the dh.

my question to you today is, should I even worry about a doc's diagnosis after this long a time being gluten-free? I'm wondering if there is a purpose for it at this juncture? I am pretty symptom free except for C when I've been glutened, plus some seboritis dermatitis (sp?) flares up as well. No pain, except for the chronic pain for when they botched the hysterectomy and damaged some nerves which is handled by a script.

thanks for any help. I just don't know what to think anymore after reading this board!

 

Gee it could be a pinch nerve alot

Victoria1234 Experienced
3 minutes ago, Victoria5289 said:

Gee it could be a pinch nerve alot

Sadly they don't have any way to treat the nerve cluster except for meds. Tried physical therapy but it just drained my bank account.

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    • Samanthaeileen1
      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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