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. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      311

      Terrible Neurological Symptoms

    2. - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Reverse Osmosis (RO) Water

    3. - Scott Adams replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Water filters are a potential problem for Celiac Disease

    4. - Scott Adams replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Water filters are a potential problem for Celiac Disease

    5. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      311

      Terrible Neurological Symptoms

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

    • Total Members
      133,578
    • Most Online (within 30 mins)
      7,748

    Amiah
    Newest Member
    Amiah
    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

    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
    • Scott Adams
      Bottled water, filtered water, distilled water, and products like Gatorade are naturally gluten-free and do not contain gluten unless contaminated during manufacturing, which would be highly unlikely and subject to labeling laws. Gluten is a protein from wheat, barley, or rye—it is not present in water, minerals, plastics, phosphates, bicarbonate, or electrolytes. Refrigerator filters and reverse osmosis systems are not sources of gluten, and there is no credible scientific evidence that distilled or purified water triggers celiac reactions. If someone experiences symptoms after drinking a specific product, it is far more likely due to individual sensitivities, anxiety around exposure, or unrelated health factors—not gluten in water.
    • Scott Adams
      Water does not contain gluten--bottled water included. This is an official warning that you'll receive a warning if you continue to push this idea. Gatorade is naturally gluten-free as well, and it's purified water does not include gluten. You can see all sort of junk on the Internet--that does not mean it is true.
    • HectorConvector
      An interesting note (though not something that I recommend) is that in the last couple of winters before this one, I drank tons of alcohol because I found it reveresed the pain substantially. It seemed it muted it, then I stopped worrying about it, and so on, so that it was reversing the sensitization cycle. I mean, strong alcohol. Not a few beers. Talking 25% ABV stuff and well beyond any limit anyone has ever seen. Yes, bad for other reasons. But it was interesting, that even after stopping the alcohol (which I could do overnight, for some reason I don't get dependent) the nerve pain would stay "low" for a while, but then gradually ramp up again to where it was before. Obviously, that's not a long term solution as my liver would probably shrivel up and I'd go broke. So the pain clinic hopefully finds a better way to desensitize the condition.
×
×
  • 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.