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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.