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

Despite Negative Results....

MrsWinkler

Recommended Posts

MrsWinkler Newbie
MrsWinkler
Posted

My daughter is 3 1/2. She's diagnosed with JDM and tested negative for celiac. She's been on gluten free diet since Feb. 1st. and I am glad I did.

A major concern that I had about possible gluten allergy were her b.m.'s. Loose, watery, foul etc. She's had her first very nearly normal one yesterday. Now I have the impression that the food she eats is starting to be absorbed.

The best indication of all?:

She's been drawing faces for a while. And they looked grim.

Last night for the first time, a face she drew has a smile.

D**** the results. NO MORE GLUTEN!

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

Celiac.com Sponsor (A8-M):


Isis Newbie
Isis
Posted

Hi!

Congratulations on getting your daughter feel better! I am also on a gluten-free diet I started a few months ago. I've been feeling better but all tests came back negative, including biopsy. unfortunately I stopped eating gluten a few months before starting testing ( I didn't know I needed to be eating gluten to get tested). Two night ago I went to an oriental restaurant and I eat rice and some beef. they put soy sauce on it and I guess it had gluten in it.. I felt very sick for 3 days, cramps, bloating, felt very very sleepy, etc. Anyway, be careful when you take her out for dinner. Also, forget if the tests came back negative, it won't harm her to be on a gluten-free diet... but if she was my daughter I would consult a nutritionist just to make sure she is eating a well balanced diet every day and getting all the nutrients she needs. I am working with a nutritionist right now to work on some severe deficiencies I have and to help me in the bone building process (osteoporosis @ age 28 due to severe folate, b vitamins and calcium deficiencies). I would hate for your baby to be one of the kids not growing up the way she is supposed to just because she is not getting what her body needs :( There is a test that is called Functional intracellular analysis (FIA).It is a blood test and they go inside the cells to see what she really is absorbing and not what is "floating" in the blood and being eliminated.

For example, my folate and calcium blood levels were great, and I have osteoporosis CAUSED by deficiencies on these. When the FIA came back, I was basically starving :(

Good luck with your little angel

sorry if the message is a little bit confusing but English is my second language and I was also trying to tell you all I could! hehe

And by the way, for your little princess...today I tried Pamela's gluten and dairy free chocolate chip cookies and they are AWESOME!!! even better that some commercial brands. Fruity Pebbles do not contain gluten and I have been eating them with no effects ;)

T.H. Community Regular
T.H.
Posted

Good for you! We did the same thing, with similar results. It's great when we can find out what's been bothering them!

congrats!

My daughter is 3 1/2. She's diagnosed with JDM and tested negative for celiac. She's been on gluten free diet since Feb. 1st. and I am glad I did.

A major concern that I had about possible gluten allergy were her b.m.'s. Loose, watery, foul etc. She's had her first very nearly normal one yesterday. Now I have the impression that the food she eats is starting to be absorbed.

The best indication of all?:

She's been drawing faces for a while. And they looked grim.

Last night for the first time, a face she drew has a smile.

D**** the results. NO MORE GLUTEN!

happygirl Collaborator
happygirl
Posted

You are a good mom!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,915
    • Most Online (within 30 mins)
      7,748
    marcusdarrell1
    Newest Member
    marcusdarrell1
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thank you, a little expensive but glad to have this source. 
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.