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18M Old - With Genetics Against Her


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#121 ravenwoodglass

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Posted 16 April 2013 - 04:40 AM

Right? I currently 800mg of B, so I was really surprised with how low it was.

but according to the 'range' I'm normal, so the doc didn't see it.

 

I left a message with the nurse to check on the VitD, thinking that it had been ordered. If not, I need it if anything for a baseline.

 

for whatever it is that I am plagued with, since its not celiac as in auto-immune.

 

So my question is, does NCGI also cause the nutrient deficiences?

Since you have been gluten light you cannot assume that you are not celiac. You also cannot assume that your poor child is not celiac as testing on little ones has even more false negatives than adult tests do. I really hope you are soon done with testing and can get your child gluten free for at least a couple of months. The symptoms and damage that may be happening to this little one while you try to get a firm diagnosis is heartbreaking.


  • 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)

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#122 Aprilelayne

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Posted 16 April 2013 - 07:43 AM

I'm fairly confident that the allergist/immunologist will, like several board members here, suggest a trial period of gluten-free to see if we find any improvements.  While this is good, it will be difficult. 

 

My little one goes to daycare, no way around that. I've confirmed with our location that she is the only Soy Free kid, we have several nut allergy kids but ZERO gluten/celiac kids.

 

While I know that it will be me providing 100% of her foods, and having to prepare them at home is not a problem, its the environment and their willingness to help.  I'm sure if things go this direction, I will simply have to meet with the director with some protocol information and set out to make an action plan together with them how to have a Celiac kiddo in their mix.

 

*must not get ahead of myself*


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#123 pricklypear1971

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Posted 16 April 2013 - 08:18 AM

Right? I currently 800mg of B, so I was really surprised with how low it was.
but according to the 'range' I'm normal, so the doc didn't see it.

I left a message with the nurse to check on the VitD, thinking that it had been ordered. If not, I need it if anything for a baseline.

for whatever it is that I am plagued with, since its not celiac as in auto-immune.

So my question is, does NCGI also cause the nutrient deficiences?


From what ive read, they don't know what NCGI means, other than it doesn't seem to show up on traditional Celiac blood tests and/or endoscopies (at least enough to be called Celiac).

So, yes, if you read between the lines plenty of people dx'ed with NCGI have nutrient deficiencies. But you also have to consider why they are dx'ed thus, instead of Celiac. Is the label given because testing wasn't done, done incorrectly, or done and one test positive/endoscopy negative...? It's all over the place.

Nutrient deficiencies are also linked to other AI diseases. I've never seen info if those who have deficiencies are/not dx'ed with Celiac/NCGI.

Also, both of you have gi issues which leaves open the idea that your intestines may not be absorbing nutrients optimally - regardless of cause. That can cause deficiencies.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#124 lisachrystine

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Posted 16 April 2013 - 08:08 PM

I just wanted to say hang in there. And, keep insisting on testing until you figure out the problem. My daughter was diagnosed with Celiac at 2.5. She had been sick her entire life - vomiting blood, low weight gain, failure to thrive, reflux... on Prevacid and every time we tried to wean her off of it, she would start vomiting within two weeks. I fired one GI doc who said she was normal and went looking for the best I could find within an hour's drive. Even at that, she had been scoped twice and had various other tests with no diagnosis. We were at our wit's end... we KNEW that this was not "normal" so I kept pushing. Finally, on her third scope, she came up with Celiac. She had been gluten-free for only a week when she said "mommy, my tummy not hurt anymore" It broke my heart. Poor little girl didn't know life without pain. I knew we had our answer. Took her off Prevacid, weight gain was back on the charts, no more vomiting (even when she gets a bug, it's minimal now). Her Celiac panels are all normal now and we are down to once a year at the GI. I don't know if that is your daughter's issue or not, but my story is simply to say - keep looking. It took me two and a half years of insisting something wasn't right, but it was so worth it to have our answer and have our daughter healthy.


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Mom to 2 little Celiacs who have been gluten free since October 2011.

#125 Aprilelayne

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Posted 17 April 2013 - 09:06 AM

Thank you everyone, I have days where I wonder if I'm barking up the wrong tree with all of this.

 

Vomit free since Sunday, but I think she's still nauseous, she holds her belly when she's sitting on the couch and rubs it.

Nominal appetite still.

Poop report from school for yesterday was a solid, but still pale yellow.

 

I had never made a note of it before, but noticed mouth sores are mentioned elsewhere on the board. I've never thought twice of it, but she's had one mouth sore in the corner of her mouth for months.  It more noticable some days than others, but its like a small blister (without a head) right in the corner of her mouth.

 

Allergist appt a week from today...


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#126 Aprilelayne

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Posted 23 April 2013 - 05:36 AM

Tomorrow is our allergist/immunologist meeting (finally!) and hopefully we will come back with some plan of action. Either additional testing or an action plan to manage her confirmed soy allergy.

 

She is still randomly reacting to something though, sh had a bad reaction on Sunday to something I cannot pinpoint.

I wrote her food log out before I forgot anything:

 

Sunday 4/21
Observed: flushed cheeks and bumps around mouth noticed around 3pm.

Foods eaten prior:
-Apple Cinnamon Nutrigrain bar (soyfree)

-1 piece of wheat bread for french toast (homemade, soy free)
-syrup (soyfree)
-turkey sausage (soy and gluten free)

-1 Betty Crocker Oatmeal cookie (soy in the ‘may’ category)
-Capri Sun fruit punch juice box.

-Stouffers’ Whale crackers (soyfree)
-sliced apple

*Flushed cheeks noticed at 3ish*

4:15-4:30 – three trips to restroom
4:30 – diarrhea response.
Irritability through evening and morning.

 

Yesterday when I picked her up from school I saw the flushing again and asked about her foods.  They saw the flushing as a result of her brief time outdoors which is possible, but I'm trying to make sure we are finding all these hidden sources of soy.

 

Yesterday she had mini-raviolis (soy content unknown so far, but obviously gluten) and fruit for lunch.  She got her soyfree alternatives for all the snacks of the day.

 

 

 

random note for my ailments:

Since doing the gluten challenge Feb-April, I am now losing a 2nd toenail randomly and continue to have bad headaches and nausea in the evenings after 4pm.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#127 Aprilelayne

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Posted 25 April 2013 - 07:21 AM

Met with the allergist yesterday...and honestly I'm not optimistic to answers.  That or I'm just frustrated.

 

We discussed her history and reaction patterns, I gave her the detailed food logs for the last three incidents, all of which were soy-free days.  Before we got to that she explained that soy is typically a minor allergy that kids do grow out of.  I then explained the cycle and extreme reactions she gets, gave her the daily logs and she agreed there is something else causing her the problem.

 

We have skin testing on 5/15.  She's testing wheat again because she's suspect of that despite the blood test (which is good for allergy sake, not celiac) and focusing on her suspected reactions to fruit.  She's testing a slew of things but specifically adding wheat and the fruits.

 

I was just slightly disappointed because while a very pleasant doctor , she seemed not overly concerned because she wasn't have any breathing or wheezing issues with her reactions (as in like a severe peanut allergy) so I felt like it was 'oh, she just gets red cheeks?--no biggie'

I explained that if whatever she is struggling with if anything like mine, she is likely in abdominal pain from spasms or cramps.  That we need to know what to avoid even if she's frigging labelled IBS, I just need to know what to weed out of her diet to let her not vomit once a week or have four to five bowel movements a day.

 

I'm cranky.

 

I've been nauseous every night for almost two weeks, no doubt stress induced. 

 

3/10 - Gastro appt - to discuss scope for reflux

3/15 - Allergist appt - for skin allergy testing


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#128 GottaSki

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Posted 25 April 2013 - 07:40 AM

You have every right to be cranky. Unfortunately - many of us have had many experiences just like this with our doctors....even more unfortunate is even the top doctors in their specialties do not often look at the entire patient - they treat symptoms not the whole body.

IMO - the worst sentence uttered by nearly every doctor I met with for several decades is:

What are you here for today? Rarely do doctors have time to play detective for their patients - sadly that is our job as patients and as parents of patients -- key word and what we need by the truckload = patience.
  • 0

-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 :)


#129 Aprilelayne

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Posted 25 April 2013 - 08:20 AM

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that  is similar enough since her issues are prominently gastro related.  Just being clear that I am fully aware that celiac is not an allergy.

 

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.

I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.

 

 

 

I am sure that my health deteriorating is due to the stress and focus on hers right now.  But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

 

i need a nap.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#130 pricklypear1971

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Posted 25 April 2013 - 08:25 AM

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that is similar enough since her issues are prominently gastro related. Just being clear that I am fully aware that celiac is not an allergy.

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.
I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.



I am sure that my health deteriorating is due to the stress and focus on hers right now. But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

i need a nap.

Honestly, I don't think you can determine if she has allergies vs. intolerances at this point. Allergies can be missed during testing, and there aren't reliable tests for intolerances. Over time, an allergic reaction may become crystal clear, unfortunately.

I wouldn't be surprised if all the testing comes up with no definitive answer...just evidence of reflux and gi irritation.

I truly think you'll have to take the issues into your own hands - elimination diets for all, to come up with answers.

I do hope the testing yields helpful information. All of you have certainly suffered enough.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#131 ravenwoodglass

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Posted 25 April 2013 - 09:14 AM

I hope you made sure that your allergist will deal with intolerances as well as true allergies. My allergist literally saved my live because my false negative blood tests meant the GI wouldn't even consider a biopsy.  A good allergist will give you a starting point for an elimination diet, a good idea for the both of you IMHO. Please don't put all your symptoms down to 'stress' and don't let the doctors tell you that her agony is in any way normal. I really hope you will do a strict elimination of gluten for you both. Inconvient as that may be. If you can't get her daycare on board looking for another care giver who will might benefit you both.


  • 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)

#132 Aprilelayne

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Posted 13 May 2013 - 05:57 AM

Small update....

 

We met with the gastro on Friday, who is now bringing the scope on the table sooner  than later in response to the allergist's plan.

 

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues.  I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

 

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

 

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

 

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#133 pricklypear1971

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Posted 13 May 2013 - 11:33 AM

Small update....

We met with the gastro on Friday, who is now bringing the scope on the table sooner than later in response to the allergist's plan.

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues. I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.


Excellent news things are moving forward.

I would INSIST they take samples for Celiac testing while they scope.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#134 Aprilelayne

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Posted 13 May 2013 - 11:52 AM

I would INSIST they take samples for Celiac testing while they scope.

ABSOLUTELY!

If we are sedating her at all, I want to address as many things as possible in one swoop.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#135 Aprilelayne

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Posted 16 May 2013 - 04:38 AM

Skin testing of suspected allergens was a bust yesterday. Nothing, not even soy showed up positive despite the RAST test and marked improvement since its elimination.

 

The allergist was apologetic and explained that while she may not have an IgE reaction or response, she obviously is having a gastro response to soy and other stuff.  She agreed that the endoscope is what she would do next to find out truly how damaged her esophagus is from the reflux. 

 

I dropped off the negative results to the gastro when I left the building yesterday at noon, so I'll call this afternoon to prod them along to see what the plan is.

 

All I do know, is that since having to be off of zyrtec and allergy meds for the skin testing, she complained about her chest and belly hurting almost daily :(  she stopped her meds last Wednesday and Friday is when things started going downhill with severe diarrhea again and the complaints.

 

I'm not sure on the EGID front though either....its just the next dx to eliminate.


  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed



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