Jump to content
  • 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):

I'm Discouraged... Need Some Advice


peetred

Recommended Posts

peetred Rookie

We have been as gluten free as possible now for a few weeks. That being said DH and I have made mistakes and it also seems that no matter where we go someone tries to give my 2 year old food. It doesn't help that DS tries to sneak food when I tell him he can't have any, even if I have his own food. He wants what everyone else is eating and he doesn't understand. I feel that we aren't going to see as clear of results as we need to see if we can't have him totally gluten free, but I feel alienated from situations b/c I have to be so picky about my son's food...

The worst part is I can't say for sure if he has Celiacs or not. Blood tests are negative... DH and I are seriously thinking of ordering tests from that laboratory online just so we know for sure. I feel dumb when I don't know for sure.. otherwise I'd probably have allergy information for him to wear or something and I could be pushy to people about his food b/c it's a true disease. Right now I just feel stuck in the middle and not able to say for sure.

Also, does anyone have extra advice for a 2 year old with Celiacs out in public settings. I feel like I have to have eyes on him at all times so someone doesn't give him something he can't have. People just don't ask the parents, you know?


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



Celiac.com Sponsor (A8-M):



cyberprof Enthusiast
We have been as gluten free as possible now for a few weeks. That being said DH and I have made mistakes and it also seems that no matter where we go someone tries to give my 2 year old food. It doesn't help that DS tries to sneak food when I tell him he can't have any, even if I have his own food. He wants what everyone else is eating and he doesn't understand. I feel that we aren't going to see as clear of results as we need to see if we can't have him totally gluten free, but I feel alienated from situations b/c I have to be so picky about my son's food...

The worst part is I can't say for sure if he has Celiacs or not. Blood tests are negative... DH and I are seriously thinking of ordering tests from that laboratory online just so we know for sure. I feel dumb when I don't know for sure.. otherwise I'd probably have allergy information for him to wear or something and I could be pushy to people about his food b/c it's a true disease. Right now I just feel stuck in the middle and not able to say for sure.

Also, does anyone have extra advice for a 2 year old with Celiacs out in public settings. I feel like I have to have eyes on him at all times so someone doesn't give him something he can't have. People just don't ask the parents, you know?

I don't have solutions for you about people offering him food etc. but I would say that if it would help you feel better or stronger, then by all means have the Enterolab testing done. I was skeptical about it (only because the work has not been scholarly reviewed/peer reviewed) but we did it for my son because he didn't want to try the diet without proof that he needed it. So, you are having the same doubts and Enterolab does give good info, especially when you have the gene test done too.

Best of luck.

~Laura

Ridgewalker Contributor

I have seen some really neat kids' t-shirts on the Web that say things like:

"Don't feed me! I have allergies."

or specific ones, like:

"I'm allergic to dairy!"

etc...

Here's a link to some gluten-free shirts and pins: Open Original Shared Link

If you're crafty, you could make your own with a plain t-shirt, stencils, and fabric paint.

okgrace Apprentice

Unfortunately I think we do have to be pushy and make everybody aware and keep our eyes on them in publlic places. I found it really hard around the holidays because our family didn't get it yet and kept trying to give her stuff and plus she was reaching for things. dd is four so she understands now and is very good about telling people about her many allergies when food is offered.

My husband and I both eat gluten-free when we are home so she doesn't feel different and there is nothing else to want. It's just easier for us and I think it has made it easier for her to accept. To keep the cost down we eat mostly meat, veggies and a grain in some sort of dish instead of buying specialty prepackaged food that is more expensive. At first is seemed like a lot more work but it's not a big deal now. I also discovered that I am gluten intolerant through this process. I would never have guessed that it affected me as well.

Good Luck to you!

Darn210 Enthusiast
I have seen some really neat kids' t-shirts on the Web that say things like:

"Don't feed me! I have allergies."

or specific ones, like:

"I'm allergic to dairy!"

etc...

Here's a link to some gluten-free shirts and pins: Open Original Shared Link

If you're crafty, you could make your own with a plain t-shirt, stencils, and fabric paint.

I was going to suggest the T-shirts, too. The also have stickers that say the same thing.

As far as telling other people without having a diagnosis . . . I would just say that you suspect a problem with gluten and you are in the midst of a food trial and to not give him anything to eat (that doesn't come from you) or it will invalidate the test. (Makes it sound kinda official, huh?? :lol: ) Say it with confidence and let them know that they will cause a setback in your trial and possibly making your child ill!! . . . you may not have a diagnosis at this time, but I would tell them that the trial diet is part of the diagnostic process. Lots of intolerances can't be medically tested for. . . and for those, it's trial and error.

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      1 Year Elimination Diet journey

    2. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

    3. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      34

      Pain in the right side of abdomen

    4. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      1 Year Elimination Diet journey

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      1 Year Elimination Diet journey

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

    • Total Members
      134,056
    • Most Online (within 30 mins)
      10,442

    Faiga
    Newest Member
    Faiga
    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

    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
    • knitty kitty
      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    • Aretaeus Cappadocia
      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
×
×
  • Create New...