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Going To Request More Tests....


taynichaf

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notme Experienced

Little vent-My Mom is another story.  She tries to be helpful, except I've asked if she cannot loudly proclaim in the grocery store, "Do you see any of your gluten foods?"   I bite my tongue because I want to say, yes I see PLENTY of gluten foods, but I need gluten-free.  Do you think next time we're near the diet coke, I should loudly exclaim, "Do you see any of your aspartame beverages?"  end rant

 

 

LOL *snort* 'aspartame beverages'  that is too funny - i'm going to do that to my mother-in-law!  she is constantly trying to feed me cupcakes - i don't know if she is just dumb or what her deal is - but she does love the aspartame beverages.  ima hafta tell her sugar is the same thing don't worry about it hahaha - thanks for the chuckle :)

 

tinychef - settle down, now.  everything's gonna be alll right.  my son is a diabetic so let me tell you this:  it's hard to figure out what combination of things are going to make you feel better!  when he was first diagnosed his sugar was all over the place so we had to figure out how to feed him, whether his background worked better for him taking it in the morning or at night, should he have a bedtime snack, blah, blah, blah - it took awhile but he is doing well with it.  it's all a learning experience - you can have a million tests and still be paralyzed with no hard and fast answer.  but, yes, get your stuff together and ms. karen will help you sort it out.  we're all here for you. now, go wash your face, put on your big girl pants and let me see that smile.  yeah, that one  ;)


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kareng Grand Master

And don't forget to clean your bathroom!

( maybe I should aim that comment about 6 foot high at my house?)

If you have all your Celiac lab work reports....post what you have. Give the "ref. ranges" and the answers. If it looks completely odd, message me. Maybe I can help you figure out what to post. If we need to, you can cover your name, address, hospital, etc and scan them and email them to me. Then I can explain what the ranges are or tell you the stupid doc didn't give you what you thought you had! Cause.....that never happens ( said sarcastically).

taynichaf Contributor

And maybe a few loads of laundry and clean your bathroom? :)

Hahahahahhaha! I actually do need to do my laundry... bad! Ha, i'll do that too:)

taynichaf Contributor

And don't forget to clean your bathroom!

( maybe I should aim that comment about 6 foot high at my house?)

If you have all your Celiac lab work reports....post what you have. Give the "ref. ranges" and the answers. If it looks completely odd, message me. Maybe I can help you figure out what to post. If we need to, you can cover your name, address, hospital, etc and scan them and email them to me. Then I can explain what the ranges are or tell you the stupid doc didn't give you what you thought you had! Cause.....that never happens ( said sarcastically).

I just got more blood work friday... So I should get the results by this coming friday, and then i'll post! The doctor also did other tests. She did one to check for iron deficiency anemia... So if that says im anemic again, I think I can tie that back to eating gluten again(last time I got tested ai was gluten light/free for awhile and it came back borderline, but normal) But I will deffinatly talk through it all with you, thanks.

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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? 
    • 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. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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