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. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.