Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Frustrated.


leighannh2

Recommended Posts

leighannh2 Rookie

I've been two weeks gluten free (aside from a couple of 'learning mistakes' along the way). Even though my (limited) tests for celiac came back negative, I was really hoping to find a way to help my bowel problems, mainly frequent D, I decided to give this a try, thinking it may be gluten sensitivity.

The first 5 days or so I found what I thought was immediate relief, no bad bad bathroom episodes at all! Then, a couple days I had mild symptoms, then the dreaded withdrawal a week in (headache and oh so tired!), then a few days of normalcy. Now, the last couple days (days 14 and 15) I'm back to the same level of symptoms I started with, even though I've been very very careful. It's very hard to stick with this with these setbacks. Am I just expecting too much? I was hoping if I truly have a problem with gluten but don't have celiac disease, that I had found the problem early and would get better quickly, which seemed to be the case those first few days.

Anyone have any experiences they could share that might help me?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Daniela03 Newbie

Honestly, your symptoms sound similar to some of the ones I've had & they weren't from gluten/wheat - they were actually from dairy and/or soy. Have you tried an elimination diet? That's what really helped me pin point exactly what was causing my issues. When you add back foods one at a time, you'll know exactly what you should & shouldn't eat. Trust me, I know you're frustrated - its taken over 3 years for me to figure out & adjust to my food allergies & I'm still working through them. Good luck!

PadmeMaster Apprentice

I spent the first month on a gluten free diet in severe pain. My issues aren't digestive tract (unless related to that evil milk -.- ), I have joint pain. And while 14 to 15 days seems like a long time (especially at first), your body may need more time. My body took about a month. Your body might be ready tomorrow or next week or a month from now. It all depends.

Although, what are you eating? Are you eating your normal foods with gluten-free substitutes, or did you go more pure than before, or? A lot of people have issues with the prepared foods (An amazing number, actually, if you read through here you'll see.). Also, you may need a new toaster, super clean your microwave, etc. Your issue may just be Cross Contamination.

I don't remember the first few days gluten free, but I've read a lot of stories on here pretty similar to yours. I think I would have given up at that point! Good job pressing forwards, it's worth it in the long run! You may also check that you're not having oats (Even gluten free. There is a protein in them that some people process the same as gluten. I'm just copying what I heard :) ).

leighannh2 Rookie

Thanks so much for your help everyone! I'm dreading giving up dairy more than gluten, to be honest. I did some research last night and found some information on something entirely different that might be going on with me - bile salts D - and some people say that calcium supplements help tremendously with that. So, that's something easy I can try, and there is also a medication I can ask for from my dr, but I'm hoping to do without a prescription.

so, at this point, I'm going to try the calcium, and stick with the gluten free for a while longer, before eliminating another food.

Even if this doesn't turn out to be my issue, I have a son with Asperger's syndrome, and I'm learning about the diet through experience. I may start him on it (and dairy free) in a few weeks. So all is not lost, even if I don't find my answers here, I may find help for him.

Oh, and about the oats, that was the thing that would send me running to the bathroom before I went off gluten, so I have avoided them completely. Which is a shame cause I love 'em!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • 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.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.