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

Hopeful but still anxious


KeriMary

Recommended Posts

KeriMary Newbie

Hi everyone! New to the forum. I was diagnosed in 2012, told to never eat gluten again, and never had a follow-up or anyone really care about the diagnosis. My Endo checked my vitamin D levels (the low level and genetic history lead to my diagnosis) bi-annually which have remained now in the normal range. This level is what I was always told determined if absorption was happening or not. I have never heard of the things everyone on here gets tested for :( I feel so cheated out of my health in a way.

anyways. I have severe, severe brain fog. I used to be so smart, sharp, witty, focused. I even have some personality changes and severe anxiety. I was put on Xanax after I was diagnosed but my tolerance to that medication is outrageous. I have to take three times the prescribed dose (my doctor knows this) in order to get any relief/clarity. I have a weight problem even though I work out four days a week (with a trainer), probably due to my flip floppy thyroid levels. Anyways, that’s my story! I have appointments with a new PCP, Endo, and GI doc in March! Just wanted to share with you all because you’re so kind and helpful. If anyone has any advice for this brain fog, I would be so appreciative. 

I should also mention that I was extremely smart and sharp before stopping gluten, ironic? Like the lack of gluten dumbed me down ? I never ever cheat. I know restaurants aren’t 100%, but I rarely chance that. There may be SOME cross contamination but I never feel repercussions. 

Thanks for reading ☺️


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
1 hour ago, KeriMary said:

Hi everyone! New to the forum. I was diagnosed in 2012, told to never eat gluten again, and never had a follow-up or anyone really care about the diagnosis. My Endo checked my vitamin D levels (the low level and genetic history lead to my diagnosis) bi-annually which have remained now in the normal range. This level is what I was always told determined if absorption was happening or not. I have never heard of the things everyone on here gets tested for :( I feel so cheated out of my health in a way.

anyways. I have severe, severe brain fog. I used to be so smart, sharp, witty, focused. I even have some personality changes and severe anxiety. I was put on Xanax after I was diagnosed but my tolerance to that medication is outrageous. I have to take three times the prescribed dose (my doctor knows this) in order to get any relief/clarity. I have a weight problem even though I work out four days a week (with a trainer), probably due to my flip floppy thyroid levels. Anyways, that’s my story! I have appointments with a new PCP, Endo, and GI doc in March! Just wanted to share with you all because you’re so kind and helpful. If anyone has any advice for this brain fog, I would be so appreciative. 

I should also mention that I was extremely smart and sharp before stopping gluten, ironic? Like the lack of gluten dumbed me down ? I never ever cheat. I know restaurants aren’t 100%, but I rarely chance that. There may be SOME cross contamination but I never feel repercussions. 

Thanks for reading ☺️

Magnesium, B-vitamins, Vitamin D etc. Should probably be supplemented. For the fog, stress, brain issues I swear by my regime of Liquid Health Stress & Energy, and Liquid Health Neurlogical support 1tbsp each 3 times a day in a beverage before a meal. Works wonders, magnesium is also wonderful, you did not mention constipation or D so I do not know which is best for you. There is Doctors best and Natural Vitality, Doctors best works great for relaxing and is easy on the gut but Natural Vitality is easier absorbed but can be harsh on the gut, it also is great for constipation. Doctors you dose as it tells you, Natural Vitality, you start off at 1/4 tsp and up it slowly to full dose over 1-2 weeks.
Liquid Health also makes Vitamin D3 in a sublingual form. ALL of these can be found on Luckyvitamin.com and on Amazon.
These will help with you fog, and anxiety.

cyclinglady Grand Master

Welcome!  

Get that follow-up testing.  At least help  confirm that you are compliant with the diet and that celiac disease is not the root cause of your brain fog and anxiety.  Once ruled out, your doctors can focus on other possible AI issues that are beyond your control (unlike celiac disease).  For now, you can focus on a good healthy diet.  Consider a modified AIP diet.  I just read a study involving this diet and IBD (autoimmune) done by Scripps in San Diego.  There was a 77% remissions rate.  Amazing!  This can (in theory)  be applied to other autoimmune issues.  It helps to validate that diet can heal.  

Open Original Shared Link

here are some follow-up guidelines:

Open Original Shared Link

Hang in there.  Consider Ennis’ tips too, but I prefer and do well without supplements.  My doctor has checked me for deficiencies and so should yours.  You need to really  figure out what is best for you (food, supplements, etc.) 

cristiana Veteran

Hi there KeriMary

 

I think iron is something worth looking into on this one, too.

My teenage daughter has been looking pale recently and has started using the wrong words for things - something that I do when my iron is low.  It made life interesting when I used to have to give talks.  One evening the audience was joining in as I tried to find the right word for 'lantern'.   (I need to get my daughter's iron checked!)

 

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
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.