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

Waiting For Biopsy Results While My Daughter Suffers


clemrobey

Recommended Posts

clemrobey Newbie

My daughter has had stomach pains since Jan. and out of control tantrums too. Bitibg, pulling hair, throwing furniture. I have had friends tell me to take her to a child psychologist, and her pediatrician said 4 year olds are menapausal! She had her endoscopy yesterday....finally. The GI doctor said he doubts she has celiacs....we will see. I just wnat her to be better! I'm so exhusted for my dauhter and me too!


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, now that she actually had the biopsy, what is stopping you from just putting her on the gluten-free diet right now? Because, no matter if the biopsy turns out to be positive or negative, you ought to give the diet a try anyway.

Both blood work and biopsy are highly unreliable in young children under six, and negative results can NOT rule out celiac disease, no matter what many ignorant doctors (including GIs who should know better) will tell you. In little kids the diet trial is the most reliable test of them all.

One of my granddaughters had terrible temper tantrums and blow-out liquid diarrhea bowel movements from the day my daughter started giving her bread.

Within a day of putting her on the gluten-free diet when she was 15 months old she turned into a little angel (for the most part :rolleyes: ) and became the easygoing kid she used to be once again.

Phyllis28 Apprentice

I agree with Ursa Major there is no reason to wait for results before going gluten free.

celiac-mommy Collaborator

You could always take her off and see what happens. That's what we did with our son and there was an instant change. I could actually take him to the grocery store and have a really great time--never has that happened before in 2.5 years! He's back on gluten before his dr appt next week and he's back to the tantrums, but the intestinal issues haven't returned and his appetite has remained good. Not sure what to think.

Worriedtodeath Enthusiast

I can second that!! My daughter turned into a devil doing things just like yours. Two weeks gluten free she was smiling. 6 weeks later she is a dream. Having suffered for years with chronic pain, I can contest to the fact that pain will make you evil. Do the diet - go ahead and remove dairy as well for the fastest results. Dairy also makes my middle child crazy. He become a screaming whiny crying thing that is out of control. Never noticed it when he was on gluten/dairy. Now it is so obvious!!

when we did the gluten challenge with my daughter it took almost 3 weeks for the gi issue to return. however the attitude was like flicking a switch.

NIght and day difference

Stacie

cruelshoes Enthusiast
She had her endoscopy yesterday....finally. The GI doctor said he doubts she has celiacs....we will see. I just wnat her to be better! I'm so exhusted for my dauhter and me too!

You've made it through the hardest part. Now that she has had the biopsy, there is no reason to continue gluten.

I hope you see positive changes on the gluten-free diet.

clemrobey Newbie

This is the first time I don't feel like the one mom with a crazy child. I feel like she is so sick, but no one will help us. I am definetley starting the gluten-free diet, regardless of the biopsy results. Her GI doctor perscribed AXID which she is taking twice a day and miralax once a day, because she was so constipated. I feel like the AXID is giving her nightmares, and the miralax is just making thigs worse. Anyone with ecperience with these medications?


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

I believe that all the treatment she might need is the gluten-free diet, rather than medications. Celiac disease can cause constipation, not just diarrhea. You will need to eliminate dairy as well, at least for a few months, in order for her to heal. Dairy is well known for causing constipation as well. And soy is no good, either.

Rice milk is a good substitute for dairy (not Rice Dream, though, it contains barley malt) to put on cereal, and so is almond milk.

Try giving her prune juice or steamed prunes for the constipation, rather than meds.

ravenwoodglass Mentor
This is the first time I don't feel like the one mom with a crazy child. I feel like she is so sick, but no one will help us. I am definetley starting the gluten-free diet, regardless of the biopsy results. Her GI doctor perscribed AXID which she is taking twice a day and miralax once a day, because she was so constipated. I feel like the AXID is giving her nightmares, and the miralax is just making thigs worse. Anyone with ecperience with these medications?

I would start her on the diet and skip the pills, just my personal opinion here. The diet will most likely take care of any issues within a very short time. If she is having stomach pain and there is no reason not to take pepto bismal, name brand liquid, that may deal with the tummy pains for the days until the diet kicks in.

I am glad you discovered this in her before they started loading her down with mind altering drugs to improve her mood.

Get her on the diet and don't wait or get talked out of it if the biopsy comes back negative. The true test is the diet.

my3apsons Newbie

I agree with everyone else that the diet is a good idea now that she's through all the testing, regardless of results.

My son also deals with horrible constipation, to the point they are considering hospital admission to help him clear it. We went on the diet, after just blood work and added VSL3 ( it's a probiotic that his GI doc wanted), as well as senna. We've only been at this a week and while we've had some improvement, we are still working on it. He is so use to the pain that he has learned to ignore it. We also so a huge change in behavior this past year that wasn't there before. He's 7.

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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

    • 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/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.