- advertisement -

Newbie question re: zero gluten

Discussion in 'Celiac' started by Paula+four, Jul 25, 2009.

  1. Paula+four

    Paula+four Approved members

    Joined:
    Jul 25, 2009
    Messages:
    56
    I really need to ask this question. My 9 year old was diagnosed with Type 1 in January and celiac this week. I admit I'm overwhelmed trying to find new food for him but I have to ask . . . Why are we supposed to be 100% compliant with no gluten with celiac and there's a range of expected/acceptable A1c's for diabetes? The diabetes camp doctor even said they purposefully run the kids high at camp to avoid the lows.

    Don't get me wrong, we will be going for zero gluten (I'm a total type A personality.) but reading over and over about using separate toasters is a lot to take. Is the difference because they don't want the celiac to feel sick? My son is asymptomatic right now and I do realize that might change.

    Thank you so much for responding and giving me some perspective on this. It's hard to add this when we were just starting to feel calm about life with diabetes. The goal of zero gluten is freaking me out!

    Thank you! I'm glad there is a place like this where I can ask this question. Paula
     
  2. aklap

    aklap Approved members

    Joined:
    Aug 18, 2006
    Messages:
    732
    Hi Paula,

    Sorry to hear you have to add another thing to your plate. It's news that you don't want to hear, but on the flip side there's much worse news than celiac disease.

    The GF diet is mind boggling at first, but it does get easier with time.

    CD and T1D go hand-in-hand - they are both auto-immune disease as I'm sure you have found out. 8 - 10% of T1D's also have CD. CD is genetic, this means your son is getting the genes from you, his father, or both. This means your entire immediate [and extended] family needs to be tested for CD - regardless of symptoms. Silent CD [presents no symptoms] does exist and is fairly common. In fact I have a good friend that is a silent celiac, he has gone back on gluten - much to my dismay. Even w/o symptoms, damage is occurring with exposure to gluten.

    Here are some celiac prevalence numbers for you...

    Average healthy people: 1 in 133
    People with related symptoms: 1 in 56
    In people with 2nd degree relative (aunt,uncle, cousin) with CD: 1 in 39
    In people with 1st degree relative (parent, child, sibling): 1 in 22

    You can find some more facts here.

    http://www.celiacdisease.net/


    It's much better to find out at 9 years of age than at 39 - 49 - 59 years of age. Early diagnosis is the key! Exposure to gluten in those that can not tolerate it is detrimental to their health. It can cause a cascade of other auto-immune diseases and a host of medical problems that one should not have to live with.

    Why is a gf diet unlike a diabetic diet? Think of gluten [wheat, barley, rye & oats] as a toxin - a poison if you will. When one consumes poison, it does damage. The body's defense system fire up and start attacking itself. How much poison is acceptable for someone to consume? Well, when it comes to gluten, there's not a real clear cut answer because everyone reacts differently, but this has been researched.

    Tolerable Amount of Gluten for People With Coeliac Disease

    So, how much is 10 mg? It's about 3 grains of rice!

    Check out Tricia Thompson's [aka The GF Dietitian] blog post - Is it OK to have a little?.

    Keep reading, keep learning, keep asking questions! Knowledge = Health. The more one knows about this condition and ones food, the healthier one will be. Good luck in your GF Journey and your Knowledge Quest.
     
  3. aklap

    aklap Approved members

    Joined:
    Aug 18, 2006
    Messages:
    732
  4. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

    Joined:
    Sep 10, 2006
    Messages:
    4,925
    I don't have celiac so I feel a little hesitant to answer this, but my understanding of why you'd strive for perfection in celiac but not with diabetes is that there are two key differences:

    1. Attempting to get a lower A1c or generally lower blood sugars means risking hypoglycemia- a potentially fatal complication. Cutting gluten does not have any similarly hazardous potentials.

    2. Related to number 1, it is NOT POSSIBLE to get perfect blood sugar control for MOST diabetics, and particularly not for most children with diabetes. Aiming for the impossible is not only likely to result in disappointment, burnout, and hypoglycemia; it is unlikely to get perfect control.
    It is my understanding (and this is where my not having celiac makes me hesitant) that it is possible to get 100% gluten free. While you're right that burnout is still an issue, burnout is less likely with an attainable goal.
     
  5. Paula+four

    Paula+four Approved members

    Joined:
    Jul 25, 2009
    Messages:
    56
    Thank you for your responses. They really do help. We are having everyone tested and we will not be having him eat gluten on purpose. What got us going down this line of thought was eating dinner last night at Garlic Jims. Our son enjoyed the gluten free pizza but we had little faith that the fast food pizza workers were really keeping the gluten free pizza prep separate from the pizza with gluten.

    How do you balance the hope that gluten free really is gluten free at a restaurant with the child's desire to be a regular pizza eating kid?

    Thank you again, Paula
     
  6. jcanolson

    jcanolson Approved members

    Joined:
    Apr 7, 2008
    Messages:
    2,115
    If you can answer that, let me know. We've been gf for over a year now, and although it is overwhelming at first, it does get easier.

    Al always explains things very well. To our kids Gluten is a poison, and any gluten in their system keep the body's reaction active so the body can't heal.

    I'd ask the restaurant manager what steps they take to keep the pizza gf, and what training the workers go through. We don't have any gf pizza places close by, but there is one about 2 hours away. It's a local place, and he is meticulous about keeping the pizza gf. Matteo's outside Nashville has gone so far as to use sealed doors into their gf kitchen. Doors that are typically used for surgerical suites. Matteo's also flash-freezes the pizzas and can ship them to you. Just saying Garlic Jim's may be taking more care than you would expect, or they may not and you may need to figure out another option.

    Hang in there!! Many of us have been down the road and know how hard it is. Ask any questions. We've probably asked them before you!
     
  7. still..hopeful

    still..hopeful Approved members

    Joined:
    Dec 29, 2007
    Messages:
    343
    When we were in Atlanta, Ga this past weekend, we found a gluten free pizza place called Pizza Fusion. The food was great. I know they are a chain and are located in Fl, Ga, CA, and some other states. You may want to see if they are around your area.
    Angie
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice