Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


Archived

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

clemrobey

Waiting For Biopsy Results While My Daughter Suffers

Recommended Posts

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!

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

Join eNewsletter

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.


Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

Share this post


Link to post
Share on other sites

Join eNewsletter

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

Share this post


Link to post
Share on other sites

Join eNewsletter

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.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

Share this post


Link to post
Share on other sites

Join eNewsletter

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?

Share this post


Link to post
Share on other sites

Join eNewsletter

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.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

Join eNewsletter

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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Join eNewsletter

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.

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter