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Diagnosis: Celiac


strawberrygm

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strawberrygm Enthusiast

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

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

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

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

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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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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