Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Final Testing For Emmah

vampella

Recommended Posts

vampella Contributor
vampella
Posted

Her enterolab gene test should be arriving at the lab by 10:30 this morning.

Wish us luck.

Also someone wanted to know how much the shipping cost me to send it back, it's was only 33.81 for over night from Manitoba Canada to Dallas TX.

We had her monthly weight and height again yesterday and she's gained another 1/2 lb. She's now 28 lbs and 37 1/2 i nchs tall at 4. YAY EMMIE!! That's like 5 lbs or so thus far & I think 2 inch's.

Also, Emmah's Dr got the letter from that horrible gastro and he laughed at it very hard because I had seen him the next day fuming angry & told him everything that happened.

She told him which he found funny as hell that I DIDN'T know why We were there, not her *ya OK*, and in the top of the letter that the IGA levels were fine but go to the bottom of the letter and it Say's well I don't know what her iga levels are.

She also went on to cover her ass, she said" this does not mean Celiacs will not develop in the near future"

He also told me that in her letter that she was saying the reason she believed emmah didn't have celiacs was because firstly the neg ttg & secondly no indented buttocks. remembering she's already be gluten-free for 4 months before getting to the gastro. he said she was going by "old" symptoms from 20 + yrs ago. before tests were more accurate. he said children who had indented buttocks and such were so far gone by the time they were dx'ed that they had these symptoms which we rarely see now since getting the ttg and parents awareness. she was a weirdo and I LOVE how she covered her butt!

Emmah's been gluten-free for 5 months now & doing great.

Anyway, thanks for all your support, I don't know if I could've done any of this somewhat properly without you.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


vampella Contributor
vampella
Posted
  • Author

She also said in her letter that she was against the gluten-free diet LOL I just laughed and said good for her.

ptkds Community Regular
ptkds
Posted

Good luck!!

I can't believe that a GI dr thinks a child has to have an "indented buttock" to have celiac. So, would my dd's cute little dimples on her bum count?? :lol:

ptkds

blueeyedmanda Community Regular
blueeyedmanda
Posted

Good Luck *hugs*

vampella Contributor
vampella
Posted
  • Author

So enterolabs did get the tests yesterday. yay. Does it really take the 2-3 weeks to get the results????

it's just too darn long to wait.

Lindsay GFMom Apprentice
Lindsay GFMom
Posted
So enterolabs did get the tests yesterday. yay. Does it really take the 2-3 weeks to get the results????

it's just too darn long to wait.

It took 2 weeks to get our results. We sent them on a Monday and we had the results first thing in the a.m. exactly 2 weeks later on Monday. We did the full test tho--gluten, dairy, and gene.

Good luck!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,647
    • Most Online (within 30 mins)
      7,748
    Julie 911
    Newest Member
    Julie 911
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Buckwheat

      By trents · Posted

      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Buckwheat

      By Inkie · Posted

      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Frequent nausea after gluten-free diet

      By Wheatwacked · Posted

      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.