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18M Old - With Genetics Against Her


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137 replies to this topic

#61 Takala

 
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Posted 30 January 2013 - 10:46 AM

Testing for food allergies will not pick up a celiac auto immune reaction, nor a n/c gluten intolerance reaction. They are not the same thing. :(


I really don't understand this going on gluten supposedly for testing, and then not getting the testing, and then going off again to start with another doctor. I have had a doctor perform in an unprofessional manner when confronted with their not being on the up and up regarding my past medical history including information sent to them by my pcp, my requests for diagnosis when I was displaying severe neurological symptoms, and my actual test results, and have had them attempt to withhold said results (showing damage) and have confronted them directly face to face about this problem, but that did not ultimately influence my diet decisions. I'm not going to ever continue to make myself sick again over a year's period of time, just to have another whack- job get insurance reimbursements while chasing the "official diagnosis" bandwagon - when they already have their pre-conceived notions set in stone. And this was not the first doctor.... this was about the 6th or 7th in a row, who were ignoring symptoms & medical history and my observations that I could alter my symptoms with an elimination diet.

Chronic D is never a "normal" symptom, especially when combined with a chronic rash. It can lead to malnutrition. :unsure: No diagnosis should be ruled out on the basis of mere failure of a blood test in the case of celiac for children (or adults) or n/c gluten intolerance. The blood tests are just not 100% reliable. Response to diet, if the diet relieves the symptoms, is.
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#62 Aprilelayne

 
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Posted 30 January 2013 - 11:08 AM

Testing for food allergies will not pick up a celiac auto immune reaction, nor a n/c gluten intolerance reaction. They are not the same thing. :(


Agree, we are seeing her regular ped regarding possible food allergens, apart from the gastro issues.
She is seeing the gastro to address the gastric and stool issues.
Do they cross paths? Are they inter-related? quite possible....but frankly I think eliminating any food allergen as causes is likely the next round to bring us fullcircle into the gluten discussion.

Regarding my on and off again history? I've given up on pursuing an official diagnosis for myself. I know I feel better w/o gluten for me.
But I have not and cannot remove gluten from my daughter's diet until we determine the cause of her problems. She will require an official diagnosis to be entitled to accomodations for school/daycare. she's only two right now, but I can't make demands at daycare regarding exposure until after a diagnosis is determined either. so the constant on/off/on plight many of us endure is not being pushed onto her as of yet.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#63 janpell

 
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Posted 01 February 2013 - 06:02 AM

Problem with relying on allergy tests, you miss a lot! This has been my process with myself and my son. He had loose stools until age three. His celiac testing came back negative as well as all his test for allergies. I had been playing around with elimination diets myself for the past two years and went fully gluten free one year ago. I am for the most part dairy free but can tolerate some parmesan cheese. I ended up bringing my son to an alternative medicine doctor after he gotten written off to having "toddler diarrhea" and we should limit his fruit.
He is gluten and dairy free now and we have to limit his nightshade and sugar consumption, completely avoiding raw tomatoes. We are also finding foods he can't handle right now like cinnamon or a certain preservative. Now that the diarrhea is cleared he will start to get a rash developing on his bum when he has food that he doesn't handle too well. My husband wasn't on board because our pediatrician said "everything is fine" don't worry about gluten but after it was removed he is now convinced. He is now rash free, diarrhea free, he doesn't have outbursts anymore. When we do slip up then he will have accidents and pee himself, or can't control his emotions. It is not easy to figure things out and change but you don't need someone to tell you everything is okay if you don't believe it. There are many options and because she is so young it is the perfect time to make the change. She will begin to like other things. Wheat is incredibly addictive and you have to break that cycle for her because she can't do it herself - and won't. I did it for my youngest and it was a struggle but we are there. I even got my older kids on board and husband. There are many allergy free website for cooking ideas for young ones.
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#64 Aprilelayne

 
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Posted 15 February 2013 - 06:26 AM

Had our visit with the pediatrician, who because of doctor politics wouldn't run the cbc and vitamin levels. The gastro would likely end up running them again to confirm or running different things, so the ped didn't want to have my daughter poked twice or more than necessary.

Despite her steady growth chart and everything on the outside appearing well, she agrees that something is still 'off' regarding her bowels.
She did throw the caveat out there that due to her age the blood tests (IgA/TTG/etc) may still show as inconclusive but she agrees I'm likely on the right track regarding an intolerance or celiac.
Due to this, she really really encouraging me to do a gluten challenge just in case if my daughter is 'inconclusive' and I come up positive, then the pediatrician will make the call and do the diagnosis.

We are scheduled for gastro on 3/1.
Assuming a followup blood draw to recheck her vitamins and levels.
The pediatrician said if the results are still inconclusive, then the upper and lower GI scope is the next step to check for damage or cause of the chronic diarrhea.

So back on hold for now....but still moving forward.
  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#65 GottaSki

 
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Posted 15 February 2013 - 07:19 AM

Thanks for the update -- hold pattern is always tough -- but as you say you are still moving forward which is good.

Hang in there :)
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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 :)


#66 Aprilelayne

 
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Posted 20 February 2013 - 08:54 AM

What a weekend!

 

This is all likely a stomach bug or something, but notating it since we are seeing the gastro so soon. Plus the issue of reflux returning possibly:

 

On Thursday I got called to pull her out of daycare due to extreme diarrhea. Three sponge bathes and school and four outfits within five hours. 

 

No fever or distress, just watery bowels....so she was allowed to return the next day assuming it was nothing contagious.

 

Friday she made it until 4pm, and we got the call to pick her up again.  Bowels are complete liquid and acidity. The smell was beyond foul, but she was still in awesome spirits.

 

Saturday morning she woke us both up to vomit and diarrhea in her bed.  Then just two bad diapers.

Dehydration started in, but I started her on diluted gatorade. She wasn't eating much at this point either.

Sunday same, vomit in the bed and diapers still yucky.

The sores on her bottom at this point were very bad. She just cried even with just the baby washcloth and water to clean her up.  She ended up having two baths on Sunday for cleaning. Then naked time to dry out.

 

Monday - more vomit and diarrhea. I took her into the doctor mostly due to the sores on her bum.  It was an convenience visit so it wasn't our normal pediatrician.  No record of any norovirus or rotovirus (vaccinated) in the area so the doctor was concerned.

(weight loss 2.4lbs  between Wednesday-Monday)

 

I turned in the stool samples late yesterday.  Parasite check again, and giardia?

 

just posting for my reference. 

ten days until the gastro followup appt.


  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#67 ravenwoodglass

 
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Posted 20 February 2013 - 09:53 AM

What a weekend!

 

This is all likely a stomach bug or something, but notating it since we are seeing the gastro so soon. Plus the issue of reflux returning possibly:

 

On Thursday I got called to pull her out of daycare due to extreme diarrhea. Three sponge bathes and school and four outfits within five hours. 

 

No fever or distress, just watery bowels....so she was allowed to return the next day assuming it was nothing contagious.

 

Friday she made it until 4pm, and we got the call to pick her up again.  Bowels are complete liquid and acidity. The smell was beyond foul, but she was still in awesome spirits.

 

Saturday morning she woke us both up to vomit and diarrhea in her bed.  Then just two bad diapers.

Dehydration started in, but I started her on diluted gatorade. She wasn't eating much at this point either.

Sunday same, vomit in the bed and diapers still yucky.

The sores on her bottom at this point were very bad. She just cried even with just the baby washcloth and water to clean her up.  She ended up having two baths on Sunday for cleaning. Then naked time to dry out.

 

Monday - more vomit and diarrhea. I took her into the doctor mostly due to the sores on her bum.  It was an convenience visit so it wasn't our normal pediatrician.  No record of any norovirus or rotovirus (vaccinated) in the area so the doctor was concerned.

(weight loss 2.4lbs  between Wednesday-Monday)

 

I turned in the stool samples late yesterday.  Parasite check again, and giardia?

 

just posting for my reference. 

ten days until the gastro followup appt.

That is a lot of weight to lose for a little one in so short a time. Can you call the gastro and see if she can be seen sooner? Maybe your ped could pull some strings?


  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#68 Aprilelayne

 
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Posted 21 February 2013 - 06:54 AM

Giardia and parasite tests all came back negative.

back to the category of 'unknown'

 

She has improved back to her version of normal.

 

No vomit this morning.  I had considered giving her  prevacid last night if I noticed anything, so I'm paying close attention if I need to resume her reflux meds.

 

Its likely a generic stomach bug, I myself ended up in serious abdominal pain yesterday and severe diarrhea as well.  Her's is on day6, but I feel better today.  Don't know if they are associated at all, if its the same then she has a higher pain threshold because I was doubled over and catching my breath from stabbing pains.  Mine was like an intense IBS flare where I barely make it to the restroom in time.

 

I asked for the lab results to be sent to the gastro since we are going next week.  I also asked for them to be sent directly, but they won't this time without a signature on something. So I have to pick them up in person for my own records, but I will do so today or tomorrow. 

 

she's in good spirits and her bum looks better already, Her appetite returned yesterday but she accidentally ate some cheese at school (it was a cheesy covering on the chicken, they accidentally didn't pull the chicken aside for her before adding the sauce) so we may see some side effects today if she ate a significant amount.


  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#69 Aprilelayne

 
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Posted 21 February 2013 - 06:56 AM

Honestly next Friday is likely the soonest we would get in anyway.

 

I checked her weight this morning at home and she maintained for the last 24hours, and she is not dehydrated anymore. Daycare said she had several trips to the potty (100% potty yesterday!!) and had one bowel movement into the potty!! They were awesome and snuck a peek for my food/daily log and said its still pretty bad at a level 2 (out of my 1-10 ranking) for liquidity.


  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#70 Aprilelayne

 
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Posted 25 February 2013 - 05:45 AM

and this morning its back!?

 

-vomit and diarrhea

 

I can understand the rationale that her reflux has returned, she's only vomiting after laying down or sleeping.  She's burping more often lately which is our only daytime symptom I've caught.

 

But the diarrhea?  If it was a stomach bug, it would be gone. Her samples were just taken on Tuesday, a week ago tomorrow. She resumed back to her normal for Friday and through the weekend.

 

Nothing jumps out at me from yesterdays' food intake....again we don't know if its gastro related at all anyway.

We do know its not a parasite or bacterial infection.

 

Quick summary off the top of my head of yesterday:

-dry cheerios

-6oz almond milk
-maple and brown sugar oatmeal (made w/ water)
-grapes


-teddy grahams


-chicken strip (1)
-apple and sweet potato squeezable fruit

-small sugar cookie

-4oz apple juice w/ probiotic

 

-meatloaf (1-2oz?) - homemade
-mashed potatoes (small amount of dairy)
 

-6oz almond milk

 

*She is not currently gluten-free since we are still very early in the dx process due to her age.

*She is dairy free, not casein free.

 

Next gastro appt is this Friday.

But if the diarrhea stays, she will have to return to her ped.


  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#71 ravenwoodglass

 
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Posted 25 February 2013 - 06:16 AM

The one thing that does jump out at me from her food intake is that is is quite gluten heavy. I hope they figure it out soon but if they don't it sure won't hurt to have her on the gluten-free diet for a couple months. The only thing that will impact is testing for celiac which at her age has a high chance of a false negative anyway. But I am sure you know that already.


  • 1
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#72 Aprilelayne

 
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Posted 25 February 2013 - 07:20 AM

Agree!

 

Which is also why I am wanting to have more confidence in if its all related to gluten before removing it. Transitioning her away from gluten at 2yrs old is not going to be fun. 

 

My gut and what is going on right now makes me want to actually push for the endoscope. Not only for the celiac evaluations but also for the reflux damage if any.


  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed


#73 nvsmom

 
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Posted 25 February 2013 - 08:09 AM

Agree!
 
Which is also why I am wanting to have more confidence in if its all related to gluten before removing it. Transitioning her away from gluten at 2yrs old is not going to be fun. 
 


Just remember that it may be easier to transition out gluten at age 2 than it will be in a fe more years
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#74 mommida

 
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Posted 25 February 2013 - 08:29 AM

For  a 2 year old removing gluten follow this law.  You must have gluten free snacks and treats with you at all times!  Children are offered candy all the time.  Explain "that will make your tummy hurt" but mommy has your safe snacks here.  You pull out 2 safe snacks and let your child choose.  Being 2 is about becoming more independant, let your little one have this control over safe snack choice.  


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#75 Aprilelayne

 
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Posted 26 February 2013 - 11:15 AM

For  a 2 year old removing gluten follow this law.  You must have gluten free snacks and treats with you at all times!  Children are offered candy all the time.  Explain "that will make your tummy hurt" but mommy has your safe snacks here.  You pull out 2 safe snacks and let your child choose.  Being 2 is about becoming more independant, let your little one have this control over safe snack choice.  

Awesome advise!!

 

She's a stubborn one, so whatever foods I do end up having to remove from her diet will be quite the battle, but will be done for her own health. 

 

If it turns out to be gluten related, my concern is more about my husband's understanding and the amount of safeguards that will need to be in place to allow the house to still have gluten.  They often enjoy their 'snack' time together, which I've managed to switch them to popcorn or nuts, but when I'm not there I have a suspicion that its more cookies and chips. ha.

 

****

She ate minimal yesterday, refusing even her almond milk.

At most she ate 4 pieces of pineapple bits (daycare) and they counted 8 saltines.

 

No more diarrhea or signs of reflux during the day and she survived the night without another blowout as well.


  • 0

(Texas)

Self: IBS and lactose intolerant, undiagnosed further.
DD (24months): 10/2012 - "Functional Diarrhea"

                                 3/2013 - soy allergy confirmed





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