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

Frustrated


ShayBraMom

Recommended Posts

ShayBraMom Apprentice

for the last two adn a half weeks I've been trying to get the Bloodwork for Celiac-Panel with Prometheus done for both my kids! It was a back and forth with calling and so on! first the Lab said it shouldn't make a difference whith whom the Panel is done, I disagreed and insisted that they contact the Gastroenterologist since they had different Panels for the Celiac to offer, by the end of the week they still didn't have their answer because they where to slow. then last week I was in the hospital with my little one for Seizuretesting 4 days, on Friday we come home I get finally a call- yes we aranged ti so we can do the Test for Prometheus, the Gastro let us know what he needs, BUT we have to order the testkits first! Well, comes tuesday this week araound, they call in the afternoon and leave a messeage on the Aswermachine whic I saw Tuesday eve "The Test-Kits are in, make sure you come in no later then Friday! Ok, yesterday we hada n allday appt. for my son in tucson (which is almost 2 hours from here) for a Neuro-Psych-Evaluation (due to a Braininjury my son received) which took form 8 in the morning til 4 p.m., we didn't even get home until the evening, means we couldn't gho either. so I went first thing this morjning, only to find out that they got Training every Thursday (Military-Lab) and won't be in until 1p.m.- ok, I drive off Base again, come back int he afternoon, onluy to be told that I should hav e come in before 1.pm. :blink: AND that hey can't do it tomorrow because it would arrive at Prometheus until Saturday and they can take it because nobody is there on Saturdays- so they sent me back home and said "Come back Monday" :ph34r: .....

One question, since they say the bloodtest is m ore accurate when you are on wheat, or let me rephrase that- you have to be on wheat to have the bloodtest done and to be more accurately, is it going to make a big difference if you take my DD of wheat today and not put her through further misery through the weekend? I got superdelicious Pretzels from Glutino today ( I was amazed, they are REALLY good and taste not really different from regular snackpretzels)- they are actually Gluten,Wheat, Casein, milk and Egg free! Last evening she actually had gotten some crust off of a white toast (she's only 10 month old) and oh boy did we have to pay! she was ok for the first two hours after eating it, she wernt to bed at 8 and at about 9 or so she started waking up crying and passing gas closer and closer. By ten she was literally waking every two-3 minutes, bending her back, kicking, screaming, crying while dozing off in between again- this went on until 1.30 in the morning! I was awake holding her on my chest trying to calm her, massaging her tummy. I do not want to put her through more then this but I do need her dignosed too to rule out or in that she has that wheat issue! Should we still be ok if she does not get any more gluten amd then has her test on monday or could that already affect the accuracy of the test?

sure I can keep her glutenfree just on the suspicion but at school later for example or day care, the chance that they still will give her here and there something with wheat is big if it is only based on my suspicion, if I do have proof they will make sure that she doesn not ever get any wheat! that's why it is important for me to have papers on all of it!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Reverse Osmosis (RO) Water

    2. - knitty kitty replied to Rosalie P's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Oat &gluten free eczEMA MOISTURIZER

    3. - Scott Adams replied to Rosalie P's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Oat &gluten free eczEMA MOISTURIZER

    4. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Reverse Osmosis (RO) Water

    5. - Scott Adams replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Persistent isolated high DGP-IGG in child despite gluten-free diet

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,504
    • Most Online (within 30 mins)
      7,748

    Brailyn
    Newest Member
    Brailyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • Known1
      I am honestly not sure.  Initially I was purchasing my RO water via a refill station at the same store for the past several years.  My employer (at the time) also has an RO water filtration system.  Thus while drinking water and coffee at home or work, I was consuming RO water.  I just so happened to switch to a gallon of sealed store bought distilled water at home and instantly felt better.  I know that sounds like an exaggeration, but it is true.  My initial thought was the RO water refill station must have been contaminated, possibly from some sort of cleaning agent. Later I bought completely sealed RO water from a different store.  Again, my stomach started making crazy noises and I felt off.  It took a few days to get through all of the RO water I bought.  I thought it was distilled or spring, but after reading the label a bit closer...nope it was RO water.  Again, as soon as I stopped drinking it my stomach settled and I felt SO much better. I cannot say what it is about RO water that does not agree with me, but there are threads on Reddit and elsewhere on the Internet with plenty of people reporting GI related issues from RO water.  I linked to one in my original post within this thread.  While doing more research, I have discovered that RO water filtration systems should not be used with copper plumbing.  Per Google AI Overview:  Reverse Osmosis (RO) water should not pass through or be stored in copper plumbing because the purified, low-TDS water is highly aggressive and causes corrosion, pitting, and pinhole leaks in copper pipes. RO water leaches copper, resulting in a metallic taste and potential health risks like copper poisoning. Always use polyethylene (plastic) tubing for RO systems. The more I learn about RO water, the more I plan to steer clear.  If it is well know to damage and leach copper...well I'll just leave it at that.
    • knitty kitty
      Welcome to the forum, @Rosalie P, I like tallow balm for my eczema.  Vintage Traditions is my favorite brand.   I find that taking Niacin B3 and Omega Threes also very helpful in healing the skin from the inside out.  Our skin reflects the state of health of our intestines.  One of the first signs I ate something that my intestines didn't like is eczema.  Milk and other dairy products definitely make my skin break out.   Have you been keeping a food journal?  Have you noticed a link between break outs or exacerbation and the food you eat?
    • Scott Adams
      If you’re avoiding both gluten and oats, you’re right — a lot of “eczema” or “moisturizer with oat” products use oat-based ingredients (like colloidal oatmeal) that can be questionable for people with celiac or oat sensitivity unless the oats are certified gluten-free and tolerated. For truly gluten-free and oat-free moisturizers many people with sensitive skin use and recommend: Vanicream Moisturizing Cream — no fragrance, dyes, lanolin, or oats CeraVe Moisturizing Cream or Lotion — gentle, oat-free, widely tolerated Eucerin Advanced Repair Cream — rich but oat-free La Roche-Posay Lipikar Balm AP+ — good for eczema-prone skin and oat-free Aveeno Sensitivity Free (not Aveeno with oatmeal) — check the label carefully Always check ingredients for things like Avena sativa / oat extract, and if you’re extremely sensitive, call the manufacturer to confirm there’s no cross-contamination with oats or gluten. Patch test any new product on a small area first. Plenty of people with eczema and gluten/oat intolerance have found these work well without triggering reactions.
    • Scott Adams
      I wonder what in RO water would cause major issues with your stomach? That seems strange, unless there is an issue with the system itself, like an installation issue, lack of changing the filter for a long time, etc.
    • Scott Adams
      Isolated DGP-IgG elevation can be tricky. In children who are not IgA deficient and who repeatedly have negative tTG-IgA and normal biopsies, DGP-IgG alone is not very specific for celiac disease. It can sometimes be elevated due to other immune activity, transient infections, lab variability, or even non-celiac inflammatory conditions. The fact that it has risen despite a gluten-free diet and without symptoms or growth issues makes true active celiac less straightforward. The pediatric GI’s plan for a supervised gluten challenge followed by endoscopy is reasonable, as it’s the only way to clarify whether this is evolving celiac or a persistent false positive. You’re doing the right thing by approaching this methodically rather than assuming the antibody alone equals disease.
×
×
  • 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.