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

How Careful Do You Need To Be?


Shamilton

Recommended Posts

Shamilton Rookie

My older daughter has recently been diagnosed as a celiac (her symptoms were loose stools and small stature). We have eliminated all major sources of gluten as well as many minor sources, but my husband is having a hard time being convinced that we need to eliminate every little bit of gluten. For example, we have left over rice cereal from Arrowhead mills that is possibly cross-contaminated, and he is concerned about not using it up first before using the grinder we bought to . He couldn't believe that we needed to get special Vanilla. My daughter is 4 and 1/2, so it is difficult for her to communicate her feelings about what she eats. She does complain about stomach aches still (almost more since we have gone on the diet!), and her stool is still a bit loose, but she has also been diagnosed with a casein allergy and we have not eliminated all cheese yet yet (we are getting there..). I guess what I am looking for is information about the sensitivity of celiacs, and if they are all sensitive to every molocule of gluten or not. Information that I can share with my husband so we can be better informed.

By the way, my younger daughter has not been tested, but she had horrible rashes and diarhea for so long while she was brestfeeding exclusively, so we finally figured out what I neded to eat, and she appears to be a celiac as well. This has, of course, led me to the conclusion that I am probably one too, and that might explain the red cheeks i have had for the last twenty years.

Any help would be appreciated!


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Regardless of her symptoms, if she ingests any gluten (yes, you read that right, any), damage will be done to her intestines. The body's immune system is a chemical machine, one that will recognize virtually everything you send through it, so yes, ALL gluten that can possibly be eliminated should be eliminated.

Connie R-E Apprentice

Well, I'm a celiac who is soooo super sensitive that I definately cannot have any molecule of gluten!!

I am lucky in a way, at least I react--many people do not, so they don't know if they are getting gluten and harming themselves or not!! :unsure:

When I first went gluten-free, I didn't react very much, but the longer I have been gluten-free, the more sever my reactions have become!

Now, if I have the tiniest bit of cross-contamination, I have the "World's Worst 9 Hour Stomach Ache Imagianable". (It's soooo bad, I've even named it! :wacko: )

I hope your husband will come to understand that the tiniest amount of gluten is stripping the villi from you little daughter's intestines! It sounds crazy, but is true...

Good luck with those hidden glutens!

Connie

wdavie Newbie

The simple answer is that you need to eliminate all Gluten. If your husband is having trouble believing than tell him the possible implications of continuing on Gluten.

For example, infertility and intestinal cancers. Whenever I feel it is too hard I remind myself of this.

I certainly do not want to sit Grace down one day and say "Sorry sweet but maybe the reason you cannot get pregnant/you have cancer is because the Gluten free diet was too hard, so we kept feeding you Gluten". Very harsh and in your face but that is the reality of Celiac Disease.

Please for your childs sake educate your husband and eliminate Gluten from the diet.

Wendy

wclemens Newbie

Shamilton,

Judging from the way my 10 month old Celiac grandson reacts to even a few grains of wheat, it is very important to eliminate all sources of gluten. He becomes irritable and fussy, has diarrhea, cannot sleep, has stomach cramps, and is a completely different baby after accidentally getting gluten into his system. It takes at least 3 days for him to feel better.

My Celiac comes out in the form of Asthma, which sets in within 15 minutes of eating any gluten-containing food, or any product containing milk, dairy, casein, whey, egg whites, or yeast. Welda

lovegrov Collaborator

As the others said, eliminate all gluten. Period. Research has shown that even low-level exposure increases the risks of cancer and other problems. Both you and the child will make enough mistakes that gluten exposure will occur anyway.

BTW, you don't necessarily need special vanilla. I went out and bought health food store, "gluten-free," expensive vanilla the first time, only to discover that every single cheaper vanilla I've checked on since has been gluten-free. This includes McCormick's, Kroger, Frontier, Penzey's and on and on.

richard

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,339
    • Most Online (within 30 mins)
      7,748

    Teresa King
    Newest Member
    Teresa King
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.