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Still Healing Vs. Being Glutened


pochtas2003

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pochtas2003 Newbie

I was diagnosed with Celiac disease about a month ago. Two weeks after my diagnoses, I felt great. Pretty much back to normal. I think that I was glutened unknowingly and it has been over a week and half and I still feel sick. IBS symptoms, muscle cramps, tired all the time. I've been trying to be extra careful about what I eat to make it doesn't have any gluten, but I'm still sick. Not sure if I'm still healing or if I'm ingesting gluten without knowing it.

 

Any advice or tips to feel better would be much appreciated.

 

Thanks


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notme Experienced

it takes awhile for the gluten reaction to go away.  if i get 'glutened' i feel it (full on!) 2 days later and then it takes another 12 days to go away  :(  you are very new - have you read the newbie 101 thread?  lots of info to help you avoid pitfalls, especially early on.  welcome to the best club you never wanted to join  -_-  hope you feel better soon.

tka Apprentice

I was diagnosed with Celiac disease about a month ago. Two weeks after my diagnoses, I felt great. Pretty much back to normal. I think that I was glutened unknowingly and it has been over a week and half and I still feel sick. IBS symptoms, muscle cramps, tired all the time. I've been trying to be extra careful about what I eat to make it doesn't have any gluten, but I'm still sick. Not sure if I'm still healing or if I'm ingesting gluten without knowing it.

 

Any advice or tips to feel better would be much appreciated.

 

Thanks

I was diagnosed about 2 months ago. It's an up and down ride and very difficult to know when you are glutened by cross-contamination, especially if you are still eating out any. I hadn't eaten out for a while until yesterday, then I really did it. We had a birthday lunch at work and my brother's birthday dinner too. I did not eat anything with gluten that I am aware of, but must have been cross-contaminated because I'm paying for it now. Will have the bloating and gas, headache, muscles aches, fatigue that can last up to 5 days or more. From what everyone on this forum has said, It can take months for you to really feel better consistently. Don't get down on yourself and don't get discouraged ( I need to remember that myself!)

A couple of other things I learned from this site that my doctor never said anything about:

1. Once you go gluten free, the reactions are much worse than before.

2. Check all of your meds for gluten.

3. Get really good at knowing how they put hidden gluten in your food and note if a food was made in a facility other than completely gluten free. Even though it is a gluten free food itself, you can be cross-contaminated.

4. Check your makeup and personal care products for gluten (including toothpaste).

5. Buy your own butter, peanut butter and condiments and label them so no one sticks a knife into them with gluten on their utensil and spreads it to the container.

6. Get a new toaster that only you use so you don't transfer gluten from someone else that way.

7. Invest in at least one pot or pan that can be designated for gluten free use only...don't reuse one that is Teflon or such coated. Buy a new spoon for stirring too.

8. Many people can't eat milk products when first diagnosed.

9. Many people can't eat oats either. They can easily be cross-contaminated in the processing.

10. Make sure your doctor has checked other markers in your blood for things like anemia, low B12, low D3, as you may need replacement until you heal.

Sorry if this is a lot. I know it can be overwhelming. I wanted to try to put all of this in one place for you. If you search items from this list in the forum, you will find threads that go into greater detail on each area. They have been a lifesaver for me. Hope you feel better soon.

it takes awhile for the gluten reaction to go away.  if i get 'glutened' i feel it (full on!) 2 days later and then it takes another 12 days to go away   :(  you are very new - have you read the newbie 101 thread?  lots of info to help you avoid pitfalls, especially early on.  welcome to the best club you never wanted to join  -_-  hope you feel better soon.

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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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