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

Just an update about my daughter!


Mermaid's Mom

Recommended Posts

Mermaid's Mom Enthusiast

Hi Everyone.

I haven't been on here much but some of you may remember me.  I am just returning to give you our update.

So what brought me here originally was that my daughter was textbook Gluten Ataxia and when we put  her on a gluten-free/DF diet she improved so much.    But like everyone else - she seemed to get "glutened" all the time and was clearly VERY sensitive.  Once we had her on the gluten-free/DF diet for a while we realized she was still getting sick and figured she must be also allergic to some of the other common culprits; corn, oats etc.  And on the advice of our Naturopath we put her on a Paleo diet.  I will spare you a LONG story of our journey following that - but the end result was that I learned about something called SIBO - which stands for small intestine bacteria overgrowth.

Celiac's are prone to SIBO.

So I ended up also finding a Dr. in Arizona that is doing AMAZING things resolving SIBO in people.  He has a developed a health plan for curing SIBO that is called the Nemechek Protocol.  It is dead easy to follow and all natural.  

So we started to implement the protocol and here we are 3 months later and my daughter is essentially cured from most of her issues.

She suffered from: 

Chronic constipation - Gone.  

Sleep issues/insomnia - Gone

Sensory Processing Disorder - Mostly resolved.  All sensory issues except some food/texture issues but even that is melting away daily and she is eating way healthier!

Chronic Fatigue -  100% GONE!!!  She was literally absent/late 150 days of school last year and now - NOTHING a true miracle!

Dysphagia (difficulty swallowing) - gone

Dyspraxia (A coordination disorder) - GONE.  almost 2 ys ago she stopped swimming in her mermaid tail.  Stopped most physical activity. She is now doing cartwheels and swimming in her tail again!

Brain fog - Gone.

Central Auditory Processing Disorder - 100% gone!  Her test results 12 mths ago were BAD.  She only had 40% processing in one ear and 65% in the other.  Now hearing is NORMAL!!

ADHD - GONE.  She went to Summer school and the teacher had no idea she had ADHD.  Her daily report cards said that she was "focused and on task" she also got E (excellent) in skills like organization, and time management.

AND...she is now eating ALL FOODS.  Even gluten!!  It took almost 3 months for her to be able to tolerate Gluten (it was still making her queasy) but this past week - pizza, buns, cookies!!  NO ISSUES.

She still has cognitive issues - difficulty trying to recall a word (could NOT remember the word Lunch even with hints) and still forgets what she was about to say but those issues are improving daily.  She is now able to do mental math etc.

Anyway...just thought I would share.  This Dr feels that most people with Celiac also have SIBO and that the SIBO is what is giving everyone all these issues.  Let me know if you have any questions! :)


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

Nice to hear she is doing better. after months of antibiotics for a infection. I myself am now dealing with a candidia issue -_-  on stuff for it and just starting that regime lol. Thank god I am already on a ketogenic/paleo diet.

I was actually starting to wonder about you and your daughter yesterday.

Mermaid's Mom Enthusiast
Just now, Ennis_TX said:

Nice to hear she is doing better. after months of antibiotics for a infection. I myself am now dealing with a candidia issue -_-  on stuff for it and just starting that regime lol. Thank god I am already on a ketogenic/paleo diet.

I was actually starting to wonder about you and your daughter yesterday.

Thanks!!  I think about you often as well - you were such an "anchor" for me to cling to when I first landed here!  

Mermaid's Mom Enthusiast

OH and it turns out that WORST thing for SIBO - the thing that causes it to grow out of control and make things worse in Probiotics!

Jmg Mentor

Glad to hear she's doing so well! 

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

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

      IBS-D vs Celiac

    3. - 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
      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.
    • 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.
×
×
  • 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.