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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748

    yfuvhg
    Newest Member
    yfuvhg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.