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TarynsMom

Now What?

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I hate not knowing if my 3-1/2 year old is actually Celiac or just gluten intolerant. At a year old she was diagnosed "failure to thrive" ALWAYS had stools that you could identify what she had for dinner.(never seemed to digest)Went from 97 percentile as a 9 pound newborn down to 3 percentile by the time she was a year old. Never really seemed in pain. (except whole milk constipating her) But was quite sickly, fevered often. She never gained 1 pound between 1 and 2 years old!! Scarey! Also has quite a...hyperactive side to her.REd food dye is BAD! Anyway...Doctor after doctor...blood tests..etc, I finally decided it had to be something she is eating. So I decided to do a process of elimination diet on her. I actually started with Gluten being that my Dad and sister are both intolerant and my cousin is celiac. Stools are now...normalish...Im sure there is something still affecting her minimally. But, 2 years now off gluten and she is up to 25 percentile! "Happy Dance" Unfortunatly, I had her off gluten prior to a celiac test. So Where do I go from here? Im 90% positive she is Celiac, just really not wanting to put her back on a gluten diet for a month or so to do these tests. Is there any other way? Does what I described sound like a celiac reaction to any of you?

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Welcome to the board, TarynsMom. All those doctors, failure to thrive, and not one of them thought to run a celiac panel on her??? So now that you have figured out the problem yourself and taken her off gluten, you have to repoison her if you want a valid test. It's enough to make you want to cry! What you have told me has 99% convinced me that she is celiac/gluten intolerant, especially with your family history - in fact you run a risk of becoming intolerant yourself and should probably get yourself tested.

At this point in her life, the importance of a positive diagnosis is significant from the standpoint of her schooling. She will need a diagnosis in order for the school to make special provisions to keep her gluten free at school, play doh, birthday treats and such, and a meal plan exemption if she is ever in a dorm in college.

What kind of a relationship do you have with her pediatrician and is he now on board with this possible diagnosis. If she has been gluten free and thriving, she could do a gluten challenge and based on the results of this your doctor may well give her the diagnosis, especially in view of the family history. Or you could order stool testing for her through Enterolab, including the gene testing to see whether she has any of the major genes for celiac or gluten intolerance. The gene testing doesn't diagnose celiac but tells whether it is likely that she has it; the antibody testing done from the stool by Enterolab is not accepted by most doctors because Dr. Fine has not published his research in a peer-reviewed journal. But it is another method of validation. However, it is doubtful that her antibodies would still be high if she has been gluten free for so long. So the genetic confirmation at this point, together with a gluten challenge (which need not last very long if she has a very strong reaction) seem to be your best bets at this point. The Enterolab test could also tell you if she has antibodies to dairy and soy, and measure her level of digestion through her fecal fat score.

Good luck on your decision making on this one. I elected not to go back on gluten to be tested because it was not going to make any difference to my life whether or not I had a diagnosis; for your daughter it could be important down the line....


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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I so feel your pain. After my girl's doctors just kinda shrugging things off as something she would grow out of we finally switched pediatricians. We knew there was a problem we just weren't quit sure what it was. We put her on a gluten free diet because I knew I was sensitive and she probably was too. At that point I had heard of celiac but didn't really know exactly what it was an it never even crossed my mind that it might be something she had. Well, at our first appointment with the knew ped she pretty much right away suggested at celiac disease. We took her to a GI who went ahead with the blood test which of course came back negative so we did the gene test with her. It came back positive for one of the two genes. We have decided that we want to go ahead with the testing since we know she has the gene and she has symptoms, based on these two things we are pretty sure the process won't be in vain and that we will get a diagnosis. We just started her yesterday and so far so good. I would highly recommend getting the gene test first. Then if she does test positive for either/both genes then you know the challenge is not a waste of time (and pain).


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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Thanks for the reply. I actually havent heard of a fecal test before. I am from Canada, so finding other ways to test Celiac other than the normal blood test/endoscopy probably do not exist. Her pediatrition actually does not want her off gluten to do the endoscopy until she is older (6 or 7) so she can better explain her feelings. Also, because of her wieght and health being such a concern for her he felt the surgery was a risk that was not needed at the time. Mind you that was a year ago, she may have gained enough weight and showed enough improvement now that he may do the surgery. Its just a painfull thought that that I have to make her sick to prove that she has this condition.

I already know that she cannot digest whole milk (constipates her)But processed dairy (cheese, yogurt) dont seem to bother her. I also realize that Im new at this gluten free diet and have probably contaminated her a few times, and I KNOW her daycare has. And can tell... She gets moody, tantrums can happen. Hyperactivity-overtiredness. Although NEVER complains of pain.

Also..Have you ever heard of anyone being OVER sensitve to bright light/loud noises/food temperature along with celiac? or bruising easily? We hare still having some issues in that department.

Sorry if im sounding needy.

Thanks.

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Also..Have you ever heard of anyone being OVER sensitve to bright light/loud noises/food temperature along with celiac? or bruising easily? We hare still having some issues in that department.

Sorry if im sounding needy.

Thanks.

Interesting that you mention this. My girly is extremely sensitive to light and loud noises. And so is my husband who we suspect may have celiac also. Not sure if it's connected or not. I do know that bruising easy is a symptom.


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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Just a thought- Have you had her vitamin and mineral levels checked to see if she is absorbing them?


Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.

2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.

Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.

So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!

My adult daughter also has been helped by eating gluten-free.

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All her blood work lately has comeback with normal levels. They were low previous to a gluten free diet.

Does anyone else have a problem with thier children not interested in food... I mean will be hungry, But once she has had a bite, loses interest.. Wont even finish a cookie without reminders that it is in her hand. No interest in feeding herself. I have to literally shovel it into her, or sit there and remind her to take another bite...for every bite. Dinner can take an hour easy. Very frusterating.

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Also..Have you ever heard of anyone being OVER sensitve to bright light/loud noises/food temperature along with celiac? or bruising easily? We hare still having some issues in that department.

Yes, I have had all these, and still do to some extent. The bruising has gone away - I believe it was a nutritional problem, plus I took grapeseed extract for it.

All her blood work lately has comeback with normal levels. They were low previous to a gluten free diet.

Does anyone else have a problem with thier children not interested in food... I mean will be hungry, But once she has had a bite, loses interest.. Wont even finish a cookie without reminders that it is in her hand. No interest in feeding herself. I have to literally shovel it into her, or sit there and remind her to take another bite...for every bite. Dinner can take an hour easy. Very frusterating.

Have you considered that the lack of interest in food once she starts eating is because eating is physically uncomfortable for her. I would find this, be really hungry but after a couple of mouthfuls could not force anything else down. For me, it was because of bloating and gas in the stomach, leaving no room to fit in food as well.

I would expect that if she still has bloating and gas that it would be because she is still getting glutened or is intolerant of one or more other foods. Do you send food with her to daycare? Are they instructed not to allow her to eat anything else. Do they let her play with Play Doh? If she is continuing to get gluten she is not healing although she may well be a lot better than she was.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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All her blood work lately has comeback with normal levels. They were low previous to a gluten free diet.

Does anyone else have a problem with thier children not interested in food... I mean will be hungry, But once she has had a bite, loses interest.. Wont even finish a cookie without reminders that it is in her hand. No interest in feeding herself. I have to literally shovel it into her, or sit there and remind her to take another bite...for every bite. Dinner can take an hour easy. Very frusterating.

For those who have heard this story before, my apologies.

I asked my son, after he went gluten free, if he noticed any changes and he said "I didn't know that eating wasn't supposed to hurt." That's an awful thing to consider - that he was in pain all those years and I didn't know. I hope you get answers and encourage you to have her try the gluten-free diet regardless of test results.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I so feel your pain. After my girl's doctors just kinda shrugging things off as something she would grow out of we finally switched pediatricians. We knew there was a problem we just weren't quit sure what it was. We put her on a gluten free diet because I knew I was sensitive and she probably was too. At that point I had heard of celiac but didn't really know exactly what it was an it never even crossed my mind that it might be something she had. Well, at our first appointment with the knew ped she pretty much right away suggested at celiac disease. We took her to a GI who went ahead with the blood test which of course came back negative so we did the gene test with her. It came back positive for one of the two genes. We have decided that we want to go ahead with the testing since we know she has the gene and she has symptoms, based on these two things we are pretty sure the process won't be in vain and that we will get a diagnosis. We just started her yesterday and so far so good. I would highly recommend getting the gene test first. Then if she does test positive for either/both genes then you know the challenge is not a waste of time (and pain).

could you please tell me what the test implies i have 5 week old baby whom is in care at moment but celiac runs in family and the careers are giving him formula what formula i don't know and won't tell me i'm also breast feeding him when have visits though today i didn't breast feed as doc's are trying to say it's something i've eaten thats up set him which i have very blane food no spices and have been on gluten free diet since i found out i was pregnet and am still on gluten free diet today he was very gastric and was throwing up his formula bootle they had sent .

i have taken his stool to douglas to be test but was wounding what else i could do when the careers won't do so? @Email me

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Interesting....my 4 year old daughter also has an extreme aversion to loud noises. She tested positive for celiac on a blood test and we are awaiting a biopay/scope.


Mommy to 2 Divas in Training

~6 yr old daughter positive Celiac blood test December 2010 (at age 4)~

~Positive Biopsy January 10, 2011~

~Gluten Free since January 11, 2011~

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