Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      Hi @CC90 Ah... that is very interesting. Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time? I could be wrong, but I would not be at all surprised if they find something on the next attempt. Coeliac damage can be very patchy, as I understand...
    2. CC90
      - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      Hi Cristiana Yes I've had the biopsy results showing normal villi and intestinal mucosa. The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.
    3. Wheatwacked
      - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives. An elevated level means your immune system is reacting to gluten. Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis o...
    4. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease
      19

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      In Addison’s disease, autoimmmune adrenal cortex disease adrenal glands don't make enough cortisol. At 12, it is usually caused by an autoimmune attack. It has a strong genetic link to the HLA-DQ8 gene. After 12 gluten free and 14 years on prednisone for adrenal insufficiency (symptoms like you describe from 1984 until 2014) I recently removed all c...
    5. trents
      - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,189
    • Most Online (within 30 mins)
      10,442
    Lhughes327
    Newest Member
    Lhughes327
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possibly way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
×
×
  • Create New...