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

New and Confused

hazelleviosa

Recommended Posts

hazelleviosa Newbie
hazelleviosa
Posted

Hello! New to this site and message boards in general, I hope I do it right :) .  I'm sure you guys probably get so tired of the same questions, but in my lurking I've seen you guys give some good advice, and I'm a little lost in all this. My 15 month old daughter started having loose stools when we started solids, so around 6 months.  Loose as in they were never normal, always degrees of loose, runny, food chunks, sometimes mucus, sometimes bad diaper rashes etc.  Around 12 months I took her off dairy for several weeks, and that made no difference.  A few weeks ago I took her off gluten.  It took almost two weeks, but we had normal stool for the first time in ages.  I got hopeful.  Then she had a small amount of gluten a week ago.  Since then her stools have been back to loose etc.  I was hoping by now things would have been headed back to normal, since she's been off gluten for a little over a week, , but if anything it's getting worse.  In this process I have learned that her great-grandmother had Celiac, not sure if that's a close enough connection for her to have the gene. I'm not aware of anyone else in the family that has it.  I do intend to test her at some point if we continue to have issues, and I understand that I will need to do a gluten challenge before that.  I'm not ready to do it at this point, the last blood draw she had was a scream until you puke trauma thing, not ready to do that to her again.   She has been tested for the standard food and environmental allergies, and those were all negative.  I know gluten issues can cause dairy issues, so is removing dairy my next step? Or is it just taking her this long to get back to regular stools after a small amount of gluten? Or is it something else all together? Too many variables! 

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

Celiac.com Sponsor (A8-M):


Ennis-TX Grand Master
Ennis-TX
Posted

Not a medical practitioner or anything but my mother would tell me stories that make alot of sense now that we know. Back when I was a baby, they learned quickly I did not stomach most grain based baby food or dairy. She says they had to feed me sorghum porridge, and some kind of special non dairy formula mix with sorghum malt.

There are way to many variables with a young child. It could many many things, I might suggest trying a non dairy yogurt also to get some probiotics perhaps, blend it with some soft pre cooled steamed veggies, try to get a balanced blend if you can.  SOO sorry I wish I knew more about diets for kids that young and could be of more help. For adults I might suggest digestive enzymes but for a child like that I am at a bit of a loss. Try talking to your doctor about the enzyme idea? Something to help get more nutrients out of the food, I know at that young of a age loose stools can cause all kinds of nutrient absorption issues.

GFinDC Veteran
GFinDC
Posted
3 hours ago, hazelleviosa said:

  I know gluten issues can cause dairy issues, so is removing dairy my next step? Or is it just taking her this long to get back to regular stools after a small amount of gluten? Or is it something else all together? Too many variables! 

If you are not going to have her tested now, yes, dairy is a good thing to remove for a while (several months).  Our immune systems don't stop working the minute a germ is killed. They are always active and ready to protect us.  Antibodies will (usually) decline over the course of several weeks to months.  Antibodies are the immune system response to a germ or gluten in the case of celiac disease.  Antibodies are what kills germs and our intestinal cells if we (celiacs) eat gluten.  Healing and recovery from celiac can take 18 months or more.  But children may tend to heal somewhat faster.  Or not, there is no guarantee.

CeliacMommaX2 Enthusiast
CeliacMommaX2
Posted
On 5/6/2017 at 3:16 PM, hazelleviosa said:

 In this process I have learned that her great-grandmother had Celiac, not sure if that's a close enough connection for her to have the gene. I'm not aware of anyone else in the family that has it.  

I just wanted to chime in that we have 2 children diagnosed (at ages 3 and 4 1/2) with their great aunt as the closest known celiac.  We now suspect at least another great aunt and maybe grandmother also had/have celiac but don't have confirmed diagnoses.  Remember, that a large number of celiacs (80%?) are undiagnosed as the symptoms vary so drastically.  

Best wishes for your daughter's health!

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.