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

Promising Scope...waiting On Bloodwork


wmramsel

Recommended Posts

wmramsel Explorer

We did the scope and biopsy and blood work.  The GI said that he did not see any damage to her villi, but he qualified that by saying he wasn't surprised because she is so young and has been off of gluten most of her life.  He said it will be the blood work and biopsy that really show if she is Celiac.  He said he thinks she definitely had a gluten problem (obviously).  

Meanwhile, she got glutoned somehow yesterday and threw up today and have multiple gross poops.  The only thing I can think of is the restaurant we went to yesterday that claimed their gluten free fair was prepared and cooked separately.  **Sigh**


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



Celiac.com Sponsor (A8-M):



mommy2krj Explorer

Oy. Sorry she got glutened yesterday! :(

Hope you get some answers from this!

 

I'm really beginning to stress out about my little guy's endoscope tomorrow. And the afterwards when I have to actually start with the gluten free diet. My menu planning skills absolutely stink. :/ My brain has just shut down and I'm no longer thinking clearly about food. *sigh* Like right now, I can't for the life of me figure out what to feed my family for lunch when we go gluten free. No real reason...I know there is plenty but I'm just coming up blank.

It would help if my kids weren't all so picky. This is going to be a rough road in the beginning.

 

Anyway...sorry for that little rant. I'm frustrated to the point of tears and should really just walk away from trying to figure this all out right now but I know it isn't going to be any easier tomorrow or the next day. Sure which I had better planning skills!

notme Experienced

Oy. Sorry she got glutened yesterday! :(

Hope you get some answers from this!

 

I'm really beginning to stress out about my little guy's endoscope tomorrow. And the afterwards when I have to actually start with the gluten free diet. My menu planning skills absolutely stink. :/ My brain has just shut down and I'm no longer thinking clearly about food. *sigh* Like right now, I can't for the life of me figure out what to feed my family for lunch when we go gluten free. No real reason...I know there is plenty but I'm just coming up blank.

It would help if my kids weren't all so picky. This is going to be a rough road in the beginning.

 

Anyway...sorry for that little rant. I'm frustrated to the point of tears and should really just walk away from trying to figure this all out right now but I know it isn't going to be any easier tomorrow or the next day. Sure which I had better planning skills!

look in the cooking and baking forum - maybe you will find some ideas - or post your own thread about lunch ideas for kids :)  we have a bunch of people on here who like to play with their food!  you will do fine feeding them, it's just a little much in the beginning.  

 

and there's no such thing as an 'unnecessary rant' around here - all rants are valid! lolz - i throw even myself a pity party every now and again.  good luck with the 'scope' - one step at a time.  you're the mama, you can do it!!

mommy2krj Explorer

look in the cooking and baking forum - maybe you will find some ideas - or post your own thread about lunch ideas for kids :)  we have a bunch of people on here who like to play with their food!  you will do fine feeding them, it's just a little much in the beginning.  

 

and there's no such thing as an 'unnecessary rant' around here - all rants are valid! lolz - i throw even myself a pity party every now and again.  good luck with the 'scope' - one step at a time.  you're the mama, you can do it!!

Thanks! I've been trying to stay positive about all this because my youngest is really very good at reading me and I didn't want him worrying any more than he already was. Poor kid has been terrified that they were going to cut open his stomach and I don't know where he got that from. :(

I will probably post my own thread about food for kids....I just keep running into small recipes that only feed one or two and there are 5 of us here and one is a bottomless pit of a teenage boy! I will keep plugging away at it and figure it out....my brain is just done for a while. Don't think it helps that I'm sick on top of it. Still fighting off the cold I caught after we got strep...good grief.

Sorry WM for hijacking your thread though.

wmramsel Explorer

Thanks! I've been trying to stay positive about all this because my youngest is really very good at reading me and I didn't want him worrying any more than he already was. Poor kid has been terrified that they were going to cut open his stomach and I don't know where he got that from. :(

I will probably post my own thread about food for kids....I just keep running into small recipes that only feed one or two and there are 5 of us here and one is a bottomless pit of a teenage boy! I will keep plugging away at it and figure it out....my brain is just done for a while. Don't think it helps that I'm sick on top of it. Still fighting off the cold I caught after we got strep...good grief.

Sorry WM for hijacking your thread though.

 

 

DON"T APOLOGIZE!!  Seriously, this is all so stressful and confusing.  I worked on it an hour or so a day.  We are probably going gluten free as a household when we get back from vacation.  It doesn't help that my MIL thinks she is "helping" when she buys junk food that says gluten-free on it.  I wouldn't let her eat this crap anyway!!!  Ugh. 

mommy2krj Explorer

Oh yeah...my MIL is the same way and my stepmom. The only one that really seems to listen at all is my mom. *sigh*

 

My dad keeps telling me it's not going to be a big deal because there's so many restaurants that offer gluten free (and yes there are quite a few) but so far only one of them that I know of has dedicated space or way of keeping away the cc and that's Chuck E Cheese. Oy. He isn't really getting the cc part of it all. But at least he isn't looking at me like I'm nuts with this one like he did when my oldest  boy was diagnosed with ADHD.

 

Fun stuff I tell ya. Thanks for the replies and understanding. :)

justa Newbie

The endoscope is way worse for us a parents. The just go to sleep and it only takes about 15 mins.

It really is not bad


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



Celiac.com Sponsor (A8-M):



mommy2krj Explorer

The endoscope is way worse for us a parents. The just go to sleep and it only takes about 15 mins.

It really is not bad

It really wasn't. And it was barely 15 minutes! They told us we had half an hour so we went to eat (since we didn't eat anything as the little guy wasn't allowed to) and all we did was go to the hospital cafeteria! Got back and they were cranky that we had left the room! Good grief. We were only gone for 20 minutes! Oy. Still waiting on the results. Hopefully the nurse calls me tomorrow with them...we have an appointment with the GI doc on Friday to go over them but they said they'd call as soon as they got the results so I didn't have to worry about them all week.

I just had no idea what to expect. My husband had an endoscope done several years ago, but I know things are always different for kids than they are for adults and I couldn't remember if my husband was in any pain or anything afterwards. All I can remember is how loopy he was from the medications they give the adults. :)

justa Newbie

Glad it went smooth

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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    3. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    5. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    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
      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
      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
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.