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

Waiting, Waiting, Waiting...

jenny-ann

Recommended Posts

jenny-ann Rookie
jenny-ann
Posted

My daughter is 2 and had her panel (DNA included) drawn last Thursday. It was sent from our lab to their parent lab to Prometheus. I am so anxious to get the results. These past 8 or 9 days I haven't been sleeping as well as I usually do. I spend too many moments of the day and night wondering what the results will be. I even dreamt about it a few nights ago. (I was watching the lab tech perform part of the test and it seemed to be negative.) I called Prometheus diresctly to find out when I will see the results myself. They were sooooooooooooooooooooooooooo nice! The gentleman I spoke to told me when they received the sample, that the samples were adequate and that they expect to have them completed on Tuesday. He invited me to call back Tuesday and check on the status of the results. I don't know how long it will take the results to make it from Prometheus to the parent lab to our lab to our doctor....

Long story short. The wait is torture. I know there are others out there waiting! Please, vent here. :)

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

Celiac.com Sponsor (A8-M):


StephanieL Enthusiast
StephanieL
Posted

We are in the waiting stage here too. This is the second Celiacs panel they are doing to r/o a lab error (and to appease me too I believe). The Dr. would NOT to the genetic test as I asked her to. We have other issues we were getting blood work done for (my son had a zero Vit. D level and has been on an supplement for a month so they are rechecking those results as well.)

We have to decide what our next step is when we get these results back. Still not sure what we are going to do.

Hang in there!

concernedmamma Explorer
concernedmamma
Posted

My daughter is 2 and had her panel (DNA included) drawn last Thursday. It was sent from our lab to their parent lab to Prometheus. I am so anxious to get the results. These past 8 or 9 days I haven't been sleeping as well as I usually do. I spend too many moments of the day and night wondering what the results will be. I even dreamt about it a few nights ago. (I was watching the lab tech perform part of the test and it seemed to be negative.) I called Prometheus diresctly to find out when I will see the results myself. They were sooooooooooooooooooooooooooo nice! The gentleman I spoke to told me when they received the sample, that the samples were adequate and that they expect to have them completed on Tuesday. He invited me to call back Tuesday and check on the status of the results. I don't know how long it will take the results to make it from Prometheus to the parent lab to our lab to our doctor....

Long story short. The wait is torture. I know there are others out there waiting! Please, vent here. :)

We are waiting also. I tried to start a new thread, but it hasn't shown up here yet. Maybe soon! We have received a 'slightly positive' on one of the blood tests, but not sure which one (anti-trans....?). Now we are waiting to be booked in for the biopsy. My son is 4.5 yrs. What have your daughters symptoms been?

jenny-ann Rookie
jenny-ann
Posted
  • Author

Stephanie,

What is the reason the doctor won't order the DNA test? Though expensive it seems like such a non-invasive way to check...

I hope your son is feeling 100% and you have some answers very quickly.

Concerned,

Our posts all take a while to show up. The moderators glance over them before releasing them. That may no longer be the case when we have a minimum number of posts. I haven't looked into it.

Your other note is on here and other than age our kiddos seem to have similar situations.

My daughter seems mostly healthy. She is on the high side of the growth/weight chart. She has awful bags under her eyes. She has diarrhea almost all the time though she does surprise me with an occassional 'normal' one.

I don't know enough about the tests to comment on your son's test results. I hope you have answers quickly.

Both, please keep posting. It is nice knowing there are others out there going through the same thing.

Jenn

StephanieL Enthusiast
StephanieL
Posted

Stephanie,

What is the reason the doctor won't order the DNA test? Though expensive it seems like such a non-invasive way to check...

I hope your son is feeling 100% and you have some answers very quickly.

Jenn, I know, right? We are having a second opinion by a Dr.who does the genetic test before biopsy. My son has no real signs of it at all actually. We found this on accident w=because of the Vit. D issue.

Jestgar Rising Star
Jestgar
Posted

Concerned,

Our posts all take a while to show up. The moderators glance over them before releasing them. That may no longer be the case when we have a minimum number of posts. I haven't looked into it.

yep. keeps out the spam. I think the number's been set to 15, but I'm not sure.

concernedmamma Explorer
concernedmamma
Posted

Thanks for everyone's responses here. It is nice to know that there are others out there waiting. I had a bit of a meltdown last night with my hubby. I am so scared that the biopsy will be positive, yet at the same time scared it will be negative, then we will be back to square one! Perhaps I need to stop reading so much, I am feeling overwhelmed already at the changes we may have to undertake. It is helpful to hear of all the positive changes people experience on the gluten-free diet. Jenny_Ann I hope you will let us know if you get any results on Tuesday!

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

Celiac.com Sponsor (A8-M):


jenny-ann Rookie
jenny-ann
Posted
  • Author

Stephanie,

Is it possible the Vitamin D problem is a result of celiac? I don't know enough about celiac to know WHICH vitamins are affected. I do know that vitamin deficiency is one of the major problems.

Concerned,

I am 100% with you on the I want it to be celiac/I don't want it to be celiac. What I really want is a solid answer, NOW. Hopefully one with a solution.

I will keep you all posted regarding the test results.

Jenn

jenny-ann Rookie
jenny-ann
Posted
  • Author

Results are in. It is NOT celiac. I am going to digest this and then decide what to do next.

concernedmamma Explorer
concernedmamma
Posted

Jenny,

I am sorry that your search for the answer is not over. I can understand the conflict between being happy it's not this, but wondering what is going on with your little one. I would be interested to hear what direction you are taking now. Good luck to you.

jenny-ann Rookie
jenny-ann
Posted
  • Author

Concerned,

Right now she is wheat free. Her improvements are not as drastic as last time. I sat down and reviewed her food/poop journal from a few weeks ago. Perhaps milk is the culprit. I am going to keep her off milk and see what results we get. Regardless, I am going to go see her primary care doctor and consider a GI or nutritionist for our next step. I lean more toward the latter as I am not inclined to have any invasive procedures done unless we are fairly certain there is a good reason for it.

Getting the 'not celiac' news was frustrating at first. It is now a relief. If it is something along the lines of a milk intolerance at least we'll know that she isn't destroying her gut when someone sneaks something into her diet that we wouldn't normally feed her.

I will continue to update here when I get answers so that others in search of answers can use it as a reference.

shepgs Apprentice
shepgs
Posted

Concerned,

Right now she is wheat free. Her improvements are not as drastic as last time. I sat down and reviewed her food/poop journal from a few weeks ago. Perhaps milk is the culprit. I am going to keep her off milk and see what results we get. Regardless, I am going to go see her primary care doctor and consider a GI or nutritionist for our next step. I lean more toward the latter as I am not inclined to have any invasive procedures done unless we are fairly certain there is a good reason for it.

Jenny_Ann, my then-2-yr-old son last summer had diarrhea for 2 weeks. For him, his stools have always been on the soft side. Anyway, I took him in to the doc, explained his main diet elements, which were wheat (my homemade baked goods) and milk (lots). They suggested taking him off milk for a while and it did clear up! I was so glad to know. He does still drink milk, just not as much as he did. Anyway, yes, too much (individual, I'm sure) milk can cause diarrhea. I hope you get it figured out!

dedeadge Newbie
dedeadge
Posted

Don't accept the "it's not Celiac" so easily. It took 4 years to finally diagnose my now 14-yr daughter with Celiac (literally diagnosed today). It started with bone injuries/fractures, then joint pain, muscle pain, abdominal pain, failure to thrive, irritability, chronic consipation, frequent headaches (which developed into migraines after more than a year), ear aches and sore throats, Vitamin D deficiency, the list goes on.

After numerous blood tests, stool tests, five EGD's and two colonoscopies, we finally got our diagnosis. If you haven't already, read 'Celiac Disease, A Hidden Epidemic' by Peter H.R. Green, M.D. (the leading expert for Celiac Disease in the country).

There is a genetic component to this disease, so think about that as well. We don't have ANYONE in our family with a confirmed diagnosis, but I'm willing to bet that my daughter's paternal grandmother has it (my MIL), but has never been diagnosed.

Sorry for the long note .... good luck to your daughter and don't give up on finding an answer!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time. This makes it very hard for the body to absorb and utilize it. Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down. Thiamine Hydrochloride is great. Benfotiamine is wonderful, too. Retaining...
    2. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      Thanks again, I'll keep pressing on. 🤞
    3. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient". It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light. If not absorbed, excreted. Absorption of riboflavin will improve...
    4. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are...
    5. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins. I am 10-days into taking this already. My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day. I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,593
    • Most Online (within 30 mins)
      7,748
    creak
    Newest Member
    creak
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • 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.