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New Here And Need Help! 8-Year-Old Daughter So Many Symptoms Even Though We Stopped Gluten Five Days Ago

stop gluten child scope testing

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#1 worriedseattlemom

 
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Posted 07 November 2013 - 10:20 PM

A little history about my sweet 8-year-old daughter. She's in a medical study (unrelated to celiac, though they do test for celiac as part of the study). She's been testing positive since she was about three, via blood test. In 2009 we had her scoped at Children's Hospital here in Seattle. The biopsy came back negative and, besides a few tummy aches and some occasional constipation, has been asymptomatic. We continued on with gluten.

 

This summer she ended up in the ER writhing around with abdominal pain. I was worried it was her appendix, which was why I took her in. They took an x-ray and said she was extremely constipated. We were given zofran and miralax and sent on our way.

 

Fast forward to three weeks ago when she got a gnarly stomach flu. The rest of the family has recovered but she can't seem to. She's still almost constantly queasy, has a stomach ache, and is constipated if we don't keep her on a regimen of prunes and a metamucil type fiber (generic). She has also developed a goiter (which I just read can be secondary to celiac), and her doctor said she looks anemic, so she's now taking Flintstones vitamins with iron. I would've preferred something more natural but couldn't find it in time.

 

She has an appointment next Friday with a pediatric GI doc and will be retested for celiac (though she's had at least 8 to 10 positives through this study she's in). My questions are: she stopped eating all gluten that we know of five days ago. Shouldn't she be showing at least a little improvement with symptoms by now? If she eats no gluten between now and next Friday will the test still be accurate?

 

Thanks for any help or input! I'm so scared and don't know how to help her feel better besides what we're doing. (Oh, and out of desperation I started giving her OTC Zantac tonight to see if it helps her sore throat/acid reflux, another ongoing symptom). So overwhelmed and sad!!!

 

~Angie (and Claire)


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#2 cyclinglady

 
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Posted 07 November 2013 - 11:03 PM

Welcome!

 

Take a deep breath!  There are lots of folks (parents) who will be willing to respond to your posting (just give it a day or so).  

 

Your daughter has had a complete Celiac Blood panel several times since she's been three?  Do you have the records?   Are you sure they were testing for Celiac Disease?   From my understanding, even though the biopsy may have been negative, many doctors will give a celiac diagnosis.  She has not been asymptomatic (constipation and tummy aches, even if they happen just occasionally, are symptoms).   Please go to the University of Chicago's celiac center website to research more about testing and what actual tests are ordered by doctors.

 

Looks anemic?  What does that mean?  To get an anemia diagnosis, the doctor has to order lab tests (e.g. CBC).  

 

Goiter?  What are her thyroid lab tests results?  Does she have Hashimoto's Thryoiditis?  That really can cause constipation if she's hypothyroid.

 

For relief it can take months to several years for many to heal (especially adults).  You should read up on cross contamination too!  You might think you're gluten free at home but you may not be!  I'm not sure those Flinestone Vitamins are gluten free.  Please read the bottle.  It should say "no gluten"!  Or check their website.  We use Gummie Vits at our house and the bottle states "no gluten".  

 

There's a "newbie" section on this site that is very helpful and here's the link:  

 

http://www.celiac.co...ewbie-info-101/

 

She should probably still eat gluten until all testing is done even though she's been off gluten for only a few days.  That's a hard call, and I'll defer to some of the experts around here.

 

I'm so sorry she's sick.  I'm not a doctor, but from what you presented, it sounds like she had Celiac.  What a shame to have suffered for so long!

 

 

Best wishes!


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#3 WinterSong

 
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Posted 08 November 2013 - 04:44 AM

Hi, 

 

So sorry to hear that you and your daughter are struggling through the diagnosis process. 

 

Ditto to everything in the post above. She needs to continue to eat gluten until she finishes her tests. If you do decide to have another biopsy, you could also consider having a gene test done. I've recently learned that doctors can skip the biopsy if they choose and diagnose Celiac based on positive blood tests + gene test + symptoms + response to gluten-free diet.

 

It certainly sounds like she could have Celiac. Have you and the rest of your family been tested? Remember that it's genetic, so you should all be tested, as well. 

 

Five days into the gluten free diet many people do not feel a lot of relief. There could be some cross contamination like cyclinglady said, or she could be going through gluten withdrawal (which actually seems to make things worse before they get better). 

 

Good luck, and I hope she feels better!


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Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#4 MominSoCal

 
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Posted 08 November 2013 - 08:05 AM

Just to add - my DD is 7yo and tested weak positive for Celiac and had a negative scope.  She has suffered from constipation since birth, which worsened a few years ago.  We did every intervention, diet change they asked and she still suffered.

Finally - we got to a GI doc and he recommended gluten-free, despite the negative scan.  She had been on daily Miralax for over two years - and within one week - was able to be completely off of it.

Now I want to add, we did some behavior modification a month before going gluten-free - and I am sure that has helped.  Here is our routine:

She gets up 20mins earlier than before

Goes pee FIRST thing when she gets up

Eats breakfast - gets dressed and then sits for 15mins on the potty (she takes her tablet)

  *If she goes #2, she cannot get up until she has ANOTHER mvmnt

She has to do this for all meals that hare eaten at home - with the AM being the most important

We eliminated juices not conducive to going (such as apple,orange)

She has mostly single pit juices (cherry,mango,pear,apricot,prune) or combos of those

 

If she has been struggling for a long time, the body needs to remember how this works on a regular basis.  

 

Hoping she feels better soon


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#5 nvsmom

 
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Posted 08 November 2013 - 09:02 AM

Oh dear.  :( The doctors told her to continue eating gluten in spite of multiple positive tests just because they didn't happen to biopsy the areas that were damaged.  :angry: Did they say why they did not think her positive results were caused by celiac disease? Most celiac tests are pretty specific to celiac disease. The tTG IgA is one tests that has a "high" false positive rate of between 1 and 9% of the (weak) positive results and those false positives are almost always caused by thyroiditis, diabetes, crohn's, colitis, liver disease or a serious infection... doctors should know this!  (((hugs)) to you.

 

If you have her past tests, we might be able to help you interpret them. Same goes for the biopsy results.

 

I would let her have her last Oreos or Kraft Dinner, and then make her gluten-free as soon as the doctor is done with testing (or you are). That is plenty of evidence for you to treat your daughter with the gluten-free diet even if the doctors don't get on board. My kids tested negative in blood tests but because I'm a celiac, and they have symptoms, I went with the assumption that they are celiacs too - I'm glad I did as they are much better.

 

You should probably get the rest of the family tested too as celiac disease runs in families.

 

Symptoms can take weeks to months to improve; sometimes it takes years. As Cyclinglady said, if her thyroid is under-functioning, that will cause worse constipation and she may need hormones to treat that issue. If she gets tested for thyroid function, request a TSH (should be near a 1 regardless of most labs' ranges), free T4 and free T3 (should be in the 50-75% range of the lab's normal reference range), and TPO Ab.

 

Best wishes.  I hope she feels better soon.  (hug)


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#6 GFinDC

 
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Posted 08 November 2013 - 10:21 AM

Hi,

 

I don't understand 10 positive tests and no diagnosis myself.  But, you can hold out for a doctors ok to put her on the gluten-free diet or go with a more cautious approach and do it yourself.  We don't need a doctor's permission to eat a gluten-free diet.  Since she has developed a goiter it is possible she is hypothyroid.  Hypothyroidism can cause constipation.  Is she taking vitamin pills with iodine in them?  Is she eating a lot of soy?  Soy is a goitrogen and should be avoided for children IMHO.  Recovery from her symptoms is going to take a little while as she has a couple issues going on, gluten intolerance of some kind and thyroid issues.  Your doctor should test her for Hashimoto's thyroiditis (tpo antibodies).  Hashimoto's thyroiditis is an autoimmune condition that attacks the thyroid.  It can cause swelling in the throat and sometimes pain and warmth in the throat.  Hashimoto's and celiac kind of go together sometimes.  They are both autoimmune conditions, and people with one autoimmune condition are at higher than normal risk to develop a 2nd autoimmune condition.

 

Celiac is autoimmune.  The immune system doesn't shut off a response instantly.  The immune system may keep making antibodies for weeks to months after the trigger is removed.  So recovery is not an over night thing when going gluten-free.  You can expect each time she gets a small amount of gluten that the immune system will  mount a new attack.  That will probably be a 2 week reaction, but it varies between people.  Children's immune systems are different from adults so they may recover faster.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#7 worriedseattlemom

 
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Posted 08 November 2013 - 01:11 PM

I'm humbled that you all took the time to read my post and respond. Thank you! It means so much!

 

Claire hasn't had her thyroid blood work done yet. That should happen one week from today when she has her other blood work for celiac. I honestly noticed the goiter (it's relatively small and my husband can't even see it), a month or two ago, Googled and it and it didn't seem to be too scary and seemed somewhat common in kids, so I didn't fret too much, and just figured I'd mention it to her doctor at her well-child visit, which was one week ago and was the appt. at which her ped. confirmed the presence of the goiter and referred us to a GI doc.

 

Our house is definitely not gluten free. I would consider it as I don't eat gluten either (tested neg to celiac but am somewhat intestinally sensitive), but my son has severe food allergies to dairy, egg, peanuts and tree nuts, and wheat is one thing he can reliably have. Of course my main concern is for my son and daughter, but at times I just don't know how I'm going to manage all these dueling food issues in our house. I had myself a good cry a couple nights ago, but that's done and I just have to move on and plan. I have been trying to be careful about not letting her food touch crumbs from our toaster oven, etc. I may one day get a toaster/breadmaker just for her, but I'm kind of overwhelmed right now and am taking baby steps. Maybe the whole family goes gluten-free for a few months so we know for sure. I also did check on the vitamins. No gluten is used, but they can't guarantee they are gluten-free because of sourced ingredients. I will search for a better iron alternative.

 

I was also reading, I think on this site, last night about lactose intolerance possibly happening to celiac patients while the gut is damaged, so I've cut out all dairy for her starting today, hoping that makes her feel better.

 

I gave her a Zantac and Zofran this morning, but she still said she felt bad and was queasy. :( She is also having a tough time at school with a not-great teacher and some anxiety/grumpiness about class and food.

 

Anyway, thanks once again for all the info and for reading my super long post. Once we get her blood work results next week I'll update. This website has been a big help already (and I just found it last night). At least there is support and community here for us. Happy Friday, everyone!


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#8 cyclinglady

 
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Posted 08 November 2013 - 04:25 PM

Are our families related?   :lol:

 

My husband's been gluten free for 12 years (no formal diagnosis) and since I was diagnosed with celiac disease in March, our entire house is now gluten free with a few exceptions.  My 12 year has learned to adapt.  I purchase gluten prepacked foods that she takes in her lunches.  She eats gluten filled cookies, but only at the table, never in my car, and she must wash her hands ASAP in order to not contaminate us.  She will tell me that she prefers my homemade gluten-free baked goods over store bought!

 

I also have been diagnosed with milk, nut, garlic and egg allergies.  When I prepare meals, none of those ingredients.  Hubby and daughter can eat ice cream while I eat a sorbet.  Nuts using go into lunches.  I do cook eggs for them, but I don't eat them.  My egg allergy seems now to be more of an intolerance, I can can eat them in baked goods.  So, it's possible to learn to cook around gluten free and allergies!  I also host all family gatherings, because I want to insure everything is gluten free.  

 

I think you'll find that it's easier to go completely gluten free in your house since your kids are young.  

 

Eliminating dairy products for a while (hard to digest with damaged villi) is a good idea.  Add in some calcium gummie vitamins to her multi.  Ask the GI to check her levels of other vitamins and minerals.  Most folks with celiac disease are deficient in many!  I was so iron deficient that I developed anemia and calcium deficient that I fractured a vertebrae doing nothing!  The good news is that kids heal so fast!  

 

Lastly,  take care of yourself.  "Put your oxygen mask on first before assisting others!"


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#9 WinterSong

 
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Posted 08 November 2013 - 06:16 PM

 

 

Lastly,  take care of yourself.  "Put your oxygen mask on first before assisting others!"

 

 


Agreed! Take a few deep breaths. It may seem like a lot to handle all at once, but have faith that things will get better :)

 

Welcome to the board!


  • 0

Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#10 MChase

 
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Posted 10 November 2013 - 07:59 PM

Toaster oven could be contaminating her food.  Plus, what is she eating at school?  Are you packing her lunches?  Is she trading part of her lunch?, eating snacks, cookies, etc at school?

 

New to gluten-free myself, but after reading lots of information, the following could be contaminating her food:  Cutting boards (plastic and wooden), wooden and plastic utensils and containers, toaster, toaster oven, any non stick cookware (if it has any minute scratches, gluten can be hiding in it), blender, food processor, bread maker, cast iron skillets, colanders/strainers.   Plus, if you wash a dish that has had gluten on it and then wash her dish, the sponge/dishcloth can harbor gluten.  I cleaned out my kitchen and am running on the bare necessities until I can afford to buy more things (Dollar stores have been a life saver).  

 

Check all medications/vitamins/supplements.  I made the mistake a week ago and took some medicine and couldn't figure out why I had intestinal issues.  I took it again today and sure enough, had major issues.  I looked at the back and found "sodium starch gycolate".  I looked it up and it can be derived from wheat.   

 

Just because a food doesn't say "wheat, barley, rye, etc" does not mean it does not contain gluten.  Modified food starch, artificial or natural flavoring and a bunch of other ingredients can contain gluten.  Make sure you check all condiments too.  

 

Are there any pets in the house?  Where is their food kept?  Is she feeding them?  Most pet food contain gluten.  

 

I'm sorry your babies are going through this.  As an adult, this seems overwhelming, I cannot imagine having my child/children with such bad reactions.  Good luck to you and your family.  


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#11 worriedseattlemom

 
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Posted 11 November 2013 - 10:30 PM

Thank you for your support, everyone!


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#12 worriedseattlemom

 
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Posted 14 November 2013 - 09:52 PM

Hi everyone,

 

I have an update! We got in to the pediatric GI doc at Seattle's Swedish hospital a day early. Didn't love the GI doc we went to bedside manner-wise, but she seemed to really know her stuff. She said about ten times that Claire seems like a "classic celiac" case. She read her report from her '09 scope and was shocked that the GI doc at Children's Hospital declared her negative, since there was at least one patch out of seven that was a low positive. I wish we would have known this so her symptoms hadn't gotten to the point where she's so miserable. Anyway, she had blood drawn for the TTG (I hope I have that right) and thyroid and we got a referral to an endocrinologist. I just can't believe my vibrant, amazing girl has all these health problems. But I guess it could be worse! My ten-year-old son has always had food allergies so it's all he knows, but this is all new to Claire. I actually started to panic tonight thinking that she's never tasted angel food cake before and now she never will.

 

My husband and I are feeling shaken up and pretty sad today. Can use all the positive vibes I can get...


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#13 nvsmom

 
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Posted 14 November 2013 - 10:16 PM

(((hugs))) I'm glad this new doctor knows her stuff.

 

The first few month gluten-free are the toughest - getting used to a new way of eating and thinking about food. I bet by the time spring rolls around, you will all be pros at this.

 

Are you getting the rest of the family checked for celiac disease? You might want to get your son checked out too. There is a genetic link, and not all celiacs have symptoms.

 

Don't discount foods yet. There are gluten-free angel food cake mixes out there, and they are pretty easy to make from scratch if you can't find a box.  My boys actually prefer gluten-free angel food cake. In fact, that's what my son requested for his birthday party this weekend.  :)

 

Best wishes.


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Nicole Posted Image

"Acceptance is the key to happiness."

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Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#14 cyclinglady

 
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Posted 14 November 2013 - 10:18 PM

Thanks for the update!  I'm glad you are finally getting some answers and help!  

 

Yes, it's hard at first going gluten free and it's a pain to eat out easily, but at least this is an illness that you can treat with good wholesome food! Things could be worse!  Claire's finally going to start feeling better and so will you!   

 

Continue to do as much research as possible on going gluten free (it helped me through my own grieving process) so that you can insure that your daughter's health will improve fast!  

 

Hmmm...angel food cake.  I haven't tried that one yet but there are plenty of recipes online for gluten free versions.


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Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#15 1desperateladysaved

 
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Posted 15 November 2013 - 04:31 AM

Thanks for giving an update. She is starting to get better and would be glad to hear of her symptoms subsiding soon.

 

D


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