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At The End Of My Rope.


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24 replies to this topic

#1 D-borealis

 
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Posted 09 July 2013 - 02:07 PM

I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.


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#2 notme!

 
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Posted 09 July 2013 - 04:03 PM

poor baby :(  and poor mama!!  (((((((hugs))))))) man, it's rough when our babies are sick (and you're 'it' - they just want mommy....)

 

at 2-3, they're at a clingy age anyway - if you noticed a difference feeding her gluten-free, DO continue to.  when you start this diet alot of times, it's two steps forward, one step back - she may just be having a bad day (she's a people, we all have those) or maybe she got some gluten somewhere and is reacting from it?  


  • 0

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#3 greenbeanie

 
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Posted 09 July 2013 - 04:55 PM

So sorry you are going through this. Has she been tested for celiac? If she hasn't been tested yet and you plan to, she'll need to be eating gluten until all testing is complete. It may be really hard to put her back on gluten for testing if she ends up responding well to the gluten-free diet, so if you think an official diagnosis might matter for school (in the future), etc., you might want to consider it now.

My daughter was just diagnosed with celiac at age 4, and her behavior was just like you describe - constantly fussy since birth, extremely clingy and whiny despite very consistent parenting and a wonderfully supportive daycare, etc. We could just never make her happy, no matter what we did. She had digestive issues since birth too, but the behavioral and neurological/sensory problems were really our main challenge early on. She started having daily tantrums before age 1, and by the time she was 3 she was routinely having 10-12 horrible tantrums almost every day. Her sleep was also so bad that she was sent to a neurologist at one point because they were concerned that all the thrashing around and crying every 45 minutes in her sleep might be seizures. We were completely exhausted, and everyone keep looking at us like we, as parents, were somehow causing this. Her tantrums were never for ordinary things like wanting toys or treats - they were triggered by the tiniest itch, sudden noises (even if they weren't loud), bright lights, and things like that. She was diagnosed with sensory integration disorder at 3 1/2, and it was kind of helpful to have a name for it, but it took until recently to get to the root of the problem. She was just diagnosed with celiac a few weeks ago, and she's suddenly turned into a sweet, loving, usually-calm child! The transformation really was amazing. And the sensory problems are almost gone already.

Whether or not you decide to pursue celiac testing, I'd urge you to give a strict gluten-free diet a good long try for at least several months (once testing is complete, if you go that route). Having gluten withdrawal symptoms for a few weeks seems to be normal, so a lack of immediate changes doesn't necessarily mean it's not helping. My daughter's first five days were pretty rough, but after that we saw a clear and fairly steady improvement. We did discover that she is sensitive to the barley enzymes used in the supposedly gluten-free Rice Dream that she was drinking every day, so we had to cut that out too. She also reacts to many brands of processed gluten-free foods, so we've had to stick to almost all fresh or homemade foods for now. Being constantly vigilant about cross-contamination in everything is tiring, to be honest, but it's so worth it to have a happy child!

I hope things improve for you soon, whether gluten is causing your daughter's problems or it's something else. As parents, we really do know our children best, and it's especially hard if doctors and others keep brushing aside extreme fussiness and clinginess as a behavioral problem when there really is an underlying reason that the child's in pain all the time.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#4 notme!

 
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Posted 09 July 2013 - 05:16 PM

if they are planning on testing her for celiac, she will need to be eating gluten, greeniebeanie is right.  i thought your doc wanted to see if she responded positively on a gluten-free diet.  if she did respond well, it sure might help her mood.  (i think my 4 y.o. grandson is at least intolerant but his parents don't see the connection - ugh - frustrating.  some days, he just cries over everything)  sorry if i misunderstood :)  

 

greeniebeanie - i'm glad you're having a happier child, you sure have been through it - and you are a good detective!  


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#5 nvsmom

 
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Posted 12 July 2013 - 07:38 AM

I would consider testing too. the tests are:

DGP IgA and DGP IgG (best test for kids)

tTG IgA and tTG IgG

total serum IgA

AGA IgA and AGA IgG (test for gliadin sensitivity)

EMA IgA (detects advanced villi damage - rarely positive in kids

 

The first three test would probably be the best for celiac disease testing in kids. She must be eating gluten for accurate testing.

 This report discuses the disease and the tests (on pages 11-12): http://www.worldgast..._long_FINAL.pdf

 

If all tests are negative, she may have non-celiac gluten sensitivity (NCGS) which has all the same nasty symptoms as celiac disease minus the villi damage. It's present in 6-30% of the population, most stats report closer to 10%, which is much more common than celiac (<1%).

 

If you decide to keep her gluten-free, keep in mind that she might have hit withdrawal. I can't remember that stat, but I think it's about one third of people experience withdrawal from gluten. It hits a few days after being gluten-free and can last a few weeks. It often involves fatigue, major moodiness, headaches, and some return of GI issues. It usually last somewhere between 1-3 weeks.

 

Best wishes.


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#6 nvsmom

 
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Posted 12 July 2013 - 07:39 AM

Oh, I forgot to add that some kids seem to have issues with breast milk if the parent is eating gluten. You might want to get tested too (it's genetic) and then go gluten-free as well.


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Nicole Posted Image

"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

CANADIAN

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#7 weluvgators

 
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Posted 12 July 2013 - 03:33 PM

((Big Hugs!!)

My super silly siren girl was exhausting!! She still can be, in a different sense, but those young years were very hard for all of us, especially her. I would get her in for the blood tests ASAP. Do some reading and decide if you are interested in pursuing a biopsy or not. The best chance of "positive" blood work is eating gluten, so give consideration to how you think testing fits into your family's health management philosophy. We chose not to pursue the biopsy, but our daughter was less than a year and could not eat any gluten directly. Working with your healthcare providers will be necessary to ensure accommodation for her as she gets older if she does have celiac, gluten intolerance, and/or food allergies....or any other medical condition for that matter.

Have you gone gluten free? This is absolutely necessary for a proper gluten free trial if you are still breastfeeding. I went through withdrawal, as did my daughter, when we went gluten free. It was a very, very, very difficult time. In some ways we were lucky, as any gluten slip was obviously worse. And it was so much obviously worse that I had constant support and encouragement from my husband.

We had to take our house gluten free to see continued improvement. We eventually recognized that "gluten free" processed foods were keeping us unwell. Moving to a whole foods diet that was prepared in our strictly gluten free home is what we had to do to get better. We have also had to work hard to find healthcare providers to help improve our health and help us navigate complications from not being properly accommodated.

I found it very helpful to have a babysitter help me during these times. Are you the primary carer for your daughter 24/7? if so, you should consider ways to help support yourself better. We had a neighbor teenage girl that would come over and help, and it was a blessing. You need breaks from the constant demands that a sick child has. Our daughter had constant, chronic bellyache that was severe. She was also depressed (so sad, so sad, I don't know why but I am just so sad!!! Wail, wail, wah, wah....on and on and on when she could *finally* articulate it at age 3!). Oddly enough, she started talking very, very early, but communicating the complexity of her pain takes time to develop. We got a body chart to help us improve the communications and better understand where she was feeing pain.

The symptoms that you described are like reading our own story. We did not have the underweight, but we went gluten free much earlier. But we did have high fever and vomitting with accidental exposures. I was not very diligent initially because of the funny logic in my head, but that only prolonged the suffering and probably contributed to more damage. Getting super sensitive diligent and giving it time under those super sensitive protocols is when we finally made substantial progress in getting well.

Please keep in mind that your daughter may be suffering from chronic pain. Trying to keep that in perspective usually helps me maintain the needed compassion. But don't underestimate how exhausting her care taking is, and you must be well supported. Best wishes for getting this sorted as quickly as you can. I know of other celiac mothers that can relate to your struggles, so please take comfort in knowing that you are not alone.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#8 weluvgators

 
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Posted 12 July 2013 - 04:11 PM

I had to make a list of things that help me cope and try to do some of them every day. It also helps to have a list of things that help my daughter cope. The best ones are when the same thing is on both lists! Here are some of our coping tools:
-making herbal teas, we like peppermint, chamomile and licorice root
-going outside for walks and swings
-taking baths with Epsom salts
-foot and belly massage (we use Shea butter or other pure oil)
-my daughter uses heat packs on her belly
-head and neck rubs
-diffusing essential oils

If you can get her in the kitchen to help with food prep, she may enjoy it....and perhaps it can be a distraction. My super silly girl has always been quite proficient at getting herself snacks from the kitchen. We facilitate that by making sure the refrigerator has stuff she can reach easily, including fruits, veggies and leftovers in easy to open containers on lower shelf. You can precut fruits and veggies to make it easier for her to grab as well.

I used a lot of "baby" carriers as well. There are some fantastic ones out there, and I carried my children for many years. You may find it helpful to get one if you don't already have one (one that accommodates a toddler/young child). I liked my wraps, Ergo and Mei Tei carriers. I found www.thebabywearer.com to be helpful in discovering more about wearing my children. Wearing my children was invaluable for our family. Getting my child on my back and out for a walk was very helpful in those times when putting her down was not an option.

I hope you find relief soon.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#9 D-borealis

 
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Posted 16 July 2013 - 06:34 AM

wow! thank you so much for the support and advice. It is such a relief to know that other people have been there. I have some progress to update on, and more questions, but will put them in a new  message. thanks again!


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#10 GottaSki

 
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Posted 16 July 2013 - 07:21 AM

Welcome Mom and Baby Girl!!!

 

Here is the good news....may of us have reached the end of our ropes -- some several times -- but we are willing to pass our ropes to others to give you a bit more line.

 

Hang in there -- it does get better :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 LFitts

 
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Posted 16 July 2013 - 09:05 AM

I have a 2.5 year old daughter who has been "high needs" since birth. Early on we discovered she was allergic to dairy and eliminated that from her and my diet (breastfeed, still breastfeeding) Except for a few phases in her life, she usually seems unhappy more often than not. This currently manifests itself in whining, tantrums, extreme clinginess among other things. She also has always been underweight, has severe tooth decay, intermittent mysterious rashes, and sleeps TERRIBLY (at most 2 hours at a time at night, all night) she also constantly wants to nurse. Lately all of this has gotten even worse, and I am starting to get burned out from being her mother. I often feel like I have nothing more to give her, and nothing makes her feel better, or happier. I finally brought her to a recommended naturopathic doctor and he suggested going gluten free for 4 weeks. Does this seem like a reasonable effort to you folks who have gluten intolerant children?

Since our visit to the doctor we have been Gluten-free for 1 week. It seemed like two of those days were slightly better: improved mood and sleeping. However, today I felt so discouraged as it seemed any progress I had been seeing went out the window: An entire day of whining and haven't been able to put her down without a total meltdown. So frustrated. Any help? This is my last ditch effort.

 

 

I have been there and know what you mean. Some days (and occasionally nearly ten years later we still have times like that) I just felt that I had nothing left to give! My celiac daughter was so sick the whole time I was nursing her and I had to go through an elimination diet. I ended up eating no dairy or beef and she got some better, but we were clueless about the wheat connection then. HANG IN THERE! Get on this board when you need some encouragement! My daughter was so sick and fussy that I babied her too much, and by the time she was three we had created a monster. It was hard for us to transition to being "tougher" on her, but it saved our sanity. I figured out around age 2 or 2.5 that she could have a meltdown in her room where I couldn't hear it just as well as she could with me holding her! ha. Sometimes just give yourself a little break from it all. It really won't hurt her to cry it out a bit in her room while you take a shower or whatever you need to do for your own sanity.


  • 1

9 year old daughter diagnosed celiac November / December 2012
Postive endoscopy / biopsy, positive antibody test, positive genetic test

She's been gluten free since diagnosis. I've been gluten free with her since Jan 2013.


#12 LoveMyDucklings

 
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Posted 16 July 2013 - 12:55 PM

Wow. This is SO us! I'm sorry you're going through this too, but it's nice to know that someone out there understands! Unfortunately, my daughter just tested negative for celiac. So I have no idea what the cause is of her pain, constipation, etc. :'(
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#13 GottaSki

 
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Posted 16 July 2013 - 02:08 PM

Wow. This is SO us! I'm sorry you're going through this too, but it's nice to know that someone out there understands! Unfortunately, my daughter just tested negative for celiac. So I have no idea what the cause is of her pain, constipation, etc. :'(

 

Welcome!

 

Did your daughter have a complete Celiac Antibody Panel?  I ask, because many docs will order only one or two of the tests to "screen" for Celiac Disease.

 

If she has been tested....you may wish to consider removing ALL gluten sources for three months to monitor improved symptoms.  Unfortunately Non-Celiac Gluten Sensitivity presents with many of the same symptoms as Celiac Disease without measurable antibodies.  The only test for NCGS is elimination of gluten.

 

Hang in there and keep looking for answers :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#14 LoveMyDucklings

 
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Posted 17 July 2013 - 09:45 PM

Welcome!
 
Did your daughter have a complete Celiac Antibody Panel?  I ask, because many docs will order only one or two of the tests to "screen" for Celiac Disease.
 
If she has been tested....you may wish to consider removing ALL gluten sources for three months to monitor improved symptoms.  Unfortunately Non-Celiac Gluten Sensitivity presents with many of the same symptoms as Celiac Disease without measurable antibodies.  The only test for NCGS is elimination of gluten.
 
Hang in there and keep looking for answers :)


Thanks!

I'm not sure what was included in the panel. She sees the ped for a follow up on Monday and I'm going to ask for a copy of the results. What test *should* she have gotten? She'll be 2 on Friday; I'm wondering about the possibility of a false negative. The ped is suppose to put in a referral for GI. I'm keeping her on gluten for now, until we see the GI, in case they want to do other testing/scope.

Sorry to hijack your thread, OP!
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#15 GottaSki

 
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Posted 17 July 2013 - 10:17 PM

Thanks!

I'm not sure what was included in the panel. She sees the ped for a follow up on Monday and I'm going to ask for a copy of the results. What test *should* she have gotten? She'll be 2 on Friday; I'm wondering about the possibility of a false negative. The ped is suppose to put in a referral for GI. I'm keeping her on gluten for now, until we see the GI, in case they want to do other testing/scope.

Sorry to hijack your thread, OP!

 

We all hijack around here...helps everyone learn...

 

so...from this point forward....ALWAYS ask for written/electronic results for any tests run for anyone in your family (ya...took my way too long to figure this one out).

 

Full Panel:

 

Total Serum IgA

tTG - both IgA and IgG

DGP - both IgA and IgG

EMA - IgA

 

Nutrients.....Celiac prevents proper absorption of nutrients:

 

B1,B2,B6, B12, D,K, Iron,Ferritin, Copper and Zinc

 

If they have not been run:

 

CMP

CBC

 

Hang in there...ask more questions...read..research.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)





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