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Waiting, Waiting, Waiting...

jenny-ann

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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. :)

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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!

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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!

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    • Dr. Gunn
      Test interpretations

      By Dr. Gunn · Posted

      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      Test interpretations

      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
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      By Dr. Gunn · Posted

      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
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      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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