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Parents, Friends and Loved Ones of Celiacs

Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.

7,183 topics in this forum

  1. jesslee23
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    Very Confused

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  2. betsyly
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    Parent With Symptoms

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  3. SofiEmiMom
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    Need Some Hugs

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  4. 4angels
    wclemens

    The Doctor Just Called This Moring. Lots Of ?s

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  5. DawnI
    julia mom

    Nj Kids

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    Signs In Baby

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  7. DLayman
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    Bam!

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  8. emsmom
    gf4life

    Daughter Just Diagnosed

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    • AnneBSunflower
      mystery gluten?

      By AnneBSunflower · Posted

      I don't have access to the report and don't know which antibodies were found. I can email my doctor and ask her for it. GI Map: It is a fecal, microbial assay. It was done through https://www.diagnosticsolutionslab.com/tests/gi-map I don't consume oats-- because I don't like them.  I am trying to figure out if my Armour Thyroid has gluten in it. It is looking like a likely culprit. Tom's of Maine says that all of their toothpaste is gluten free. I share a kitchen with my son who eats gluten. Mostly, this translates to him eating his own bread. He eats my gluten free pasta and other items when we have a shared meal.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thanks @cristiana I really appreciate hearing all of this... I definitely need to look out better for the shared dishes/pans/ovens thing.  I'm currently not doing a good job of that at all.  But I think I need to make the airfryer a gluten-free only airfryer.  I've been keeping a food diary for these past few days and so far its been interesting.  I think I have 2 issues going on: I get a head/neck/shoulder/jaw ache when I get glutened (as well as feeling fatigued and brain fog).  At least this is what I think are my symptoms from consuming gluten.  I think that the only things I consumed were marked gluten-free, but they were a combination of "certified gluten-free" and "gluten-free", so I think I am definitely worried thinking that the "gluten-free" non-certifieds are not good enough for me.  Also, I feel like the issue of cross-contamination of dishes could be an issue for me too.  But there's also a second issue I'm trying to figure out.  I ate 2 dishes containing chicken this week from gluten-free companies (frozen dish, fully contained and sealed) - one of which had the "certified gluten free" logo on it.  And right after eating, I had bowel movements that I think would be classified as steatorrhea.  I have this type of bowel movement multiple times a week lately, which has become quite miserable. But from my food diary, I can tell that when I don't eat meat or eat fish, I am not experiencing this issue. From my reading, I can see that steatorrhea can result from malabsorption in the gut due to celiac, and I know that I do have issues with malabsorption because I have iron-deficiency anemia (my ferritin was 10 when last tested). I also had low potassium and low Vitamin D when first diagnosed with celiac, but both have come back into the normal range since I started going gluten-free and taking supplements.   Based on what you all are saying, I am now thinking that my iron-deficiency anemia, my steatorrhea, and my head/neck aches may all still be persisting because I'm still consuming this lingering amount of gluten regularly.  I've really got to do a lot to switch over to ONLY eating certified gluten-free products and also creating a clean space within my kitchen that is just for me to use, and probably just skip restaurants completely for a while... Also maybe in the mean time, I might just keep my foods simple.. no dairy or meats (just fish) which my stomach seems happier with. Do you all think this is something I should go into my GI doctor about?  Because when I saw her last, I wasn't having steatorrhea.  My GI symptoms were actually kind of mild, which I thought was sort of strange since I had just got diagnosed with celiac disease.  I was dealing with mostly headaches, etc and so I've been mostly working with a neurologist and physical therapist on these symptoms.. but there's only so much they can do when I trigger a brand new headache/stiff neck every week and I'm starting to think that celiac is at the root of all of this...  Thanks for all your support and insights
    • trents
      mystery gluten?

      By trents · Posted

      Welcome to the forum, @AnneBSunflower! Can you be more specific about the gluten antibodies? Which ones were found? Do you have access to the report and can you post the results? What is a "GI map"? How was this done? Is this a fecal matter test? Are you still consuming oats? Even "Gluten-free" oats? Have you checked all meds and supplements for possible gluten fillers or casings? Oral hygiene products? Are you sharing cooking facilities with wheat eaters?
    • AnneBSunflower
      mystery gluten?

      By AnneBSunflower · Posted

      Hi. I am looking for mystery gluten in my diet due to having a GI map done recently and the results found gluten antibodies. However, let me provide a bit of background. I was diagnosed with Hashimoto's 15 years ago. Ten years ago I consulted with a functional medicine doctor who put me on the AIP diet due to gastrointestinal distress. She did not diagnose me with celiac disease, but my thyroid antibodies skyrocketed when we reintroduced gluten after 6 months on the AIP diet. I have been maintaining a gluten free diet for 10 years. I have on again, off again gut issues, cannot lose weight, chronic vitamin deficiencies despite a diet focused on whole foods, and my thyroid numbers are whacky even with medication (my T3 is good, T4 chronically low, TSH low). My doctor diagnosed me this week as having celiac in addition to the Hashimoto's. Again, I have been eating gluten free for 10 years. My doctor says there is something I am eating that my body is reacting to that has gluten and I have inflammation in my gut. I don't buy anything that is processed without reading the label and it stating it is gluten free. I know things like soy sauce, salad dressing, potato chips (I haven't eaten a potato chip in probably 30 years), roasted nuts, lunch meat, etc. can have gluten. What else? Does Armour Thyroid have gluten? Kirkland Almond non-dairy beverage (doesn't say gluten free, but there are no ingredients that would indicate gluten)? Philadelphia Cream cheese plant-based cream cheese says it is gluten free but it contains maltodextrin, could this still be a source of gluten? If the plant-based cream cheese with maltodextrin could be a source of gluten, could anything labeled gluten free but containing maltodextrin still be a source of gluten?
    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I struggled for a long time.   My TTG levels took an age to come down.  I even gave pure gluten free oats a miss, it took 8 years before I could tolerate them.  Removing dairy temporarily from my diet was hugely helpful.  Check your utensils and the oven you use are scrupulously clean, and don't open roast or bake food uncovered in an oven shared with gluten eaters.  Shared grills must be thoroughly cleaned down, too. Our oven packed up a couple of years after I was diagnosed and after that time the top oven became my family's oven, I use the lower oven.  Also our dishwasher - the old one left a residue, and sharing with gluten eaters I think this was an important factor in my slow recovery.  When the dishwasher packed up I started hand washing the plates and making sure they were really rinsed well.  When we got a new one we bought a Miele does the initial rinse with clean water, not yesterday's old water.   I stopped eating out for a while - that's a biggie.  In recent years, in the UK, thanks to Zoe's Law, caterers are having to really tighten up on catering for people with coeliac disease and allergies so I am now finding eating out much less risky.  But I'd advise being very careful with restaurants where flour is thrown about and is airborne (such as pizzerias) or where harried chefs might cook pasta in glutenous water by mistake, as those are the places I've been glutened in the most.
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