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VAGuy

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VAGuy Apprentice

I've been trying to adhere to a gluten-free for two months after it was suggested by a dietician. The information on this site is just great, I've learned so much and it will be a great help. I think I'm going to do the Enteron tests and see what they show - I think I'd slug a doctor who wanted me to go back on gluten so they could tell for sure, I've felt increasingly worse for 23 years (51 now), I don't ever want to take a step backwards.

I'm amazed at the number of people describing situations similar to mine:

told it was IBS

depression

fatigue

doctors that don't listen

joint pain

sleep problems

Been looking for a miracle for years, maybe I've found it.

Do you people eat at restaurants - or just at home?

I think giving up pizza and deserts is the toughest for me so far - my Mom is/was a fantastic baker, a bakery nearby makes eclairs so good I salivate at the thought of them - I'm really going to have to learn to bake.

Reading the posts at this site is a great help - thanks again

Phil the Scrawny One


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Guest jhmom

Hi Phil:

I think you have made a wonderful decision by taking charge of your health!

I also think Enterolab is a great idea :) . That is how I was diagnosed after suffering for years only be told I had IBS.

I eat at home most of the time. If I have family gathering I prepare mine and my daughters food and we take it with us. We eat out about once a week. I only go to places I KNOW has a gluten-free menu and food that I know I can tolerate by trial and error. I eat at Wendy's, Chick-Fil-A and Outback Steakhouse. I have not had any trouble with any of these places other than the salad dressing at Outback, it was just a little to spicy for me :D If you have an Outback near you they have an AWESOME gluten-free brownie dessert! It is YUMMY!!!!

seeking-wholeness Explorer

Hi, Phil!

Let's hear it for forward progress! Like you, I feel like maybe I have finally found the key that will allow me to unlock my full potential as a human being, and no one could pay me enough to convince me to go back on gluten for testing!

Right now I eat exclusively at home except when I am traveling, and even then I take as much food with me as possible. Either I have gotten EXTREMELY sensitive to gluten in the past month or so, or I have some temporary intolerances (besides lactose) that I haven't figured out yet. I haven't found a good pizza recipe yet, but I have found a couple of delicious cookies. One is a (vegan!) gingerbread cookie; the recipe is Open Original Shared Link. The other is a fruit-filled bar cookie with a crumble topping that I adapted myself from a regular recipe, and I will post the recipe as soon as I get a solid block of computer time without my baby trying to climb on my lap! These cookies really help me feel less deprived of the good things in life.

I hope you find some emotionally satisfying foods in short order, and that you continue to feel better each day!

Guest LisaB

I feel just as you do Phil, there are great people on these boards that can help with the bad and share in the good. I think being a person that has gone through what we have really adds to our overall character! :wacko::P

Seriously, what doesn't kill you...o.k., it almost killed us all, but we are still typing so...

Glad your here, glad we are all here and can help each other.

As far as restaurants go, I have gone out to eat only a couple of times since going gluten-free, but I'm still not sure what is doing what yet. My immune system is so shot that it is hard for me to tell when I have a virus or if it is gluten that is causing suffering. It also depends on how desperate you are to feel better, I am limiting any potential mistakes because I can't live like this any longer. If your not too bad off and the risk is worth it, then o.k., but there is always the chance that even if you have eaten there before there will be cross contamination from a cook or whatever...it is tough, no way around it.

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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.
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      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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