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

A happy update!

Mermaid's Mom

Recommended Posts

Mermaid's Mom Enthusiast
Mermaid's Mom
Posted

We are only 6 weeks into being Gluten Free and the improvements in my daughter are astounding!  Truly shocking. 

Biggest improvements are definitely in brain fog,  fatigue and pain.  She is one month constipation free and laxative free!   It seems to have completely resolved itself!

I have no real way of knowing if she is having improvements with her Visual Processing Disorder....but it *appears" as though her Auditory Processing Disorder is mostly resolved.  She hasn't worn her FM system in a month and we no longer have to repeat ourselves.  She had a friend here today and the friend asked why she was gluten-free.  We explained that she is intolerant and Gluten makes her sick.  I explained it a bit and asked if she noticed that my daughter was different lately.  She said "YES!  Now when I talk to her and my head is down she actually answers me!".  I almost cried!

Yesterday I bought a slackline (essentially a tightrope you string between trees) and in 23 hours she learned how to balance and take 4 steps on it!  Typically she has horrible balance!

She still has nausea at bedtime ( I think it might be from the Magnesium) and she still gets minimal heartburn etc.  She still goes into school late everyday but her energy in the evening is OFF the charts! 

She is also sleeping better at night and reports that she has ZERO issues with swallowing anymore - though I think that resolved prior to going gluten-free and in part due to months of B12 injections!

We have real hope that we can resolve most of her issues!  I would say she is almost 50% of the way there in only 6 weeks!

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

Celiac.com Sponsor (A8-M):


marren27 Apprentice
marren27
Posted

Happy news to hear of your daughter's drastic improvements! You must be a proud mom!

Jmg Mentor
Jmg
Posted
3 hours ago, Mermaid's Mom said:

We have real hope that we can resolve most of her issues!  I would say she is almost 50% of the way there in only 6 weeks!

Fantastic! It's always nice to read of good outcomes, thanks for sharing :)

Reading these sites it's easy to focus on the negative, but the reality is that for most of us the gluten free diet delivers the single biggest boost to health and well being it would be possible to imagine. It's great for you both that at 6 weeks you have tangible results which will help you both stay the course and hopefully see lot's of improvement or indeed resolution to remaining symptoms.

I'd suggest maintaining any diary or records you're currently keeping and perhaps supplementing with photos or videos. As time goes on there may be a temptation to stray from the diet, so that evidence may be useful at some point?

 

Mermaid's Mom Enthusiast
Mermaid's Mom
Posted
  • Author
4 hours ago, Jmg said:

Fantastic! It's always nice to read of good outcomes, thanks for sharing :)

Reading these sites it's easy to focus on the negative, but the reality is that for most of us the gluten free diet delivers the single biggest boost to health and well being it would be possible to imagine. It's great for you both that at 6 weeks you have tangible results which will help you both stay the course and hopefully see lot's of improvement or indeed resolution to remaining symptoms.

I'd suggest maintaining any diary or records you're currently keeping and perhaps supplementing with photos or videos. As time goes on there may be a temptation to stray from the diet, so that evidence may be useful at some point?

 

Thanks!!  I have actually kept VERY detailed logs and videos over the past 3 years.  I have videotaped her therapy  sessions where she struggled to use her foot to tap the floor.  Where she was unable to cross the midline.  I have compiled over 400 pages of documents from everything to what she said and did to what rabbit hole I was currently chasing for answers.  It started out as a way to track her progress but eventually morphed into the rough outline of a book that I am co-writing with her OT.

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.