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Diagnosis: Celiac

strawberrygm

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strawberrygm Enthusiast
strawberrygm
Posted

we finally got the results of dd's second set of bloodwork back.

the total IGA went down from 56 to 46, and the test that is supposed to be at least 20 to be normal, hers is 0.4.

i cant remember the abbreviations.

i will find out tomorrow if they want us to hold off on the diet until an endoscopy is performed or not.

however, i figure i should go ahead and place an order for foods and snacks to get started.

i have been looking at glutenfreemall.com. we live in small town america, so online will be my best bet for foods.

what on there do you recommend? what do you say is horrible? are the cheaper brands as good as the pricey ones?

it is so close to the end of the school year, should i go ahead and replace her art supplies now as well or wait till next school year?

i am also going to start a support group here, anyone have any suggestions about that as well?

guess this means i will be sticking around this board, and i look forward to getting to know you all!

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feedmykids Rookie
feedmykids
Posted

I live in a small town too. I really hate ordering before I know if we like it or not. I usually wait until we make a trip to a larger town and visit a health food store and find the product. THat way I only buy one with no shipping. If we like it - we order it. If not - we don't. Mostly I find that doing my own cooking works best for us! Good luck!

KTNY Newbie
KTNY
Posted

In regards to food and snacks: It's hit-or-miss with gluten-free foods in my experience, regardless of price. I haven't tried everything on glutenfreemall but I will say that I find the Glutano brand to be kind of bland. I have had good experiences with the Enjoy Life brand (great bagels) and Gillians. I don't think it's on glutenfreemall but I also like products made by Pamela's and the Erewhon gluten-free cereals (you might find them elsewhere online). As an aside, if you're ever traveling and get to a Whole Foods their Gluten Free Pantry stuff is really the best tasting in my experience.

strawberrygm Enthusiast
strawberrygm
Posted
  • Author

ok my ex husband has already ticked me off

he has talked to some doc that bowls with him that supposedly works at st jude who tells him celiac is no big deal and that it is ok for her to have gluten, just in moderation.

so i just told dd that her dad has talked to a doc who specializes in cancer, not celiac, and that while her daddy trusts him and he may be a great doc who means well, he doesnt know as much as our specialists and she is to do as her doc at vandy tells her.

thats just what i am afraid of, us working hard to get her gluten free and then her going over there and him not caring and doing what he thinks is fine.

mmcdaniels Apprentice
mmcdaniels
Posted

I would agree that tastes vary a lot for gluten/free products. Most of the ones I've bought, I won't buy again. My son's favorites are Annie's Gluten Free rice pasta and cheddar, Chebe pizza dough, Pamela's pancake mix. We haven't liked any of the Envirokids or Glutino breakfast or snack bars. I have also noticed that some mixes are very easy to prepare and others are fairly complex so you may want to read instructions and decide whether or not you want to mess with it. My son doesn't like any of the specialty gluten-free cereals so we stick to Trix and Fruity Pebbles.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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