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18M Old - With Genetics Against Her


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#1 Aprilelayne

 
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Posted 27 August 2012 - 09:47 AM

I have hesitated in joining and asking, but I'm starting to second guess myself. I am 80% confident that I am at least 'gluten sensitive' and 50-70% sure that my 18month old is as well, if not a true Celiac.

Her ped finally gave us a referral for a GI to assess her in response to her many issues. Have to wait until Sept 1st to call for the appt. I'm still hopeful that I'm wrong, but don't know if its denial or practical interpretation based on my personal history and issues and hers.

My daughter is 18months old:
-has yet to have a normal bowel movement.
-reflux since birth, controlled w/ prescription Prevacid
-Asthmatic, that is compounded with her reflux, so the ped is nervous in weaning off the Prevacid (she was hospitalized in March in distress)
-eczema (minor)
-lactose intolerant
-possible issues with the soymilk as well (still getting rock hard belly)

The primary reason for the referral is that she does not eat many things. Her diet is meats and carbs. She refuses fruits and veggies, except for applesauce and bananas (rarely)...we assume this is due to the acidity and her reflux. 80% of her diet is crunchy carbs (crackers, goldfish,cereal, etc) and 20% proteins (deli meat, chicken, ground beef, peanut butter). We cannot decipher if its a psychological aversion or a medical reason for her excessive pickiness. The ped wants her to start feeding therapy, but we both want to know what exactly she can and cannot eat before starting therapy.

So I wonder if its me more curious for myself about Celiac or not. Family history is horrid for stomach and gastro stuff. All the women in my family are lactose intolerant, my dad has colitis and polyps, two cousins have Crohn's, and now my neice has come up as Casein allergic. I have IBS and am lactose intolerant and my entire life has been plagued with stomach issues. This summer, March - July, I went low-carb and eliminated 95% of the gluten from my diet and felt AMAZING for the first time that I can ever remember. Knowing how great I felt and how I immediately feel like crap about an hour or two after indulging in gluten, I started researching more for my daughter's sake.

Is it a fair guess to include Celiac as a potential diagnosis?

The ped already mentioned that she's asked the gastro to for the endoscope to assess for damage from the reflux and she agreed that if they are in, they will likely do the samples for possible Celiac.

But I'm curious if they would do any allergen testing first or just go straight to the scope? Obviously if she's confirmed w/ gluten issues she and I would go gluten-free together in the house. I went back on gluten in August to be tested myself, mostly to justify the change in lifestyle for my husband who does not understand the scope of it (he is not a native English speaker and the whole subject of gluten and allergies is lost on him.)

Thanks for any feedback, after a relatively decent weekend with her diet, I have started to wonder if I'm just reading too much into her pickiness.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


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#2 beachbirdie

 
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Posted 27 August 2012 - 12:07 PM

I have hesitated in joining and asking, but I'm starting to second guess myself. I am 80% confident that I am at least 'gluten sensitive' and 50-70% sure that my 18month old is as well, if not a true Celiac.

Is it a fair guess to include Celiac as a potential diagnosis?

The ped already mentioned that she's asked the gastro to for the endoscope to assess for damage from the reflux and she agreed that if they are in, they will likely do the samples for possible Celiac.

I went back on gluten in August to be tested myself, mostly to justify the change in lifestyle for my husband who does not understand the scope of it (he is not a native English speaker and the whole subject of gluten and allergies is lost on him.)

Thanks for any feedback, after a relatively decent weekend with her diet, I have started to wonder if I'm just reading too much into her pickiness.


Yes, it is fair to pursue the possibilities of celiac. With the family history that you shared, it is quite reasonable to think "celiac". Please do not let them "sort of maybe think about doing biopsy". Make sure they DO it, and take plenty of samples (minimum of 6, more is better). Make sure your daughter continues to eat gluten while awaiting testing. To go gluten free or even gluten "light" can cause tests to be falsely negative.

It would be truly wonderful to break a chain of sickness that has plagued your family. All the things you mentioned can go with celiac; many true celiacs go years to decades with diagnoses of IBS, acid reflux, colitis, etc., and feeling ill even with treatment. Then they stumble into a celiac diagnosis and after going gluten free, finally find healing.

A couple of posters here say IBS is doctor shorthand for "I Be Stumped". IBS isn't really a disease, it's just what they say when they can't figure out what is causing your intestinal distress.

What is your husband's native language, if you don't mind sharing. Not to pry, but there are folks here from all over the place and if there is someone who could put it into his language it might be helpful!

Welcome to the forum! I'm so glad you came out of anonymous mode and shared your concerns. This is a wonderfully supportive place to be, and no matter how many times a question has been asked, it will always get a patient answer from someone here. Folks here know how difficult it is to navigate the world of celiac and gluten intolerance because many of them have struggled for years, some to the point of being deathly ill; and the medical profession largely failed them. They have a deep desire to help others learn quickly and get better treatment.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#3 ravenwoodglass

 
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Posted 27 August 2012 - 12:28 PM

Welcome to the board. You both sure do sound like you might be in the right place. Gluten can be quite addictive and that can draw us to what is really hurting us. Your DD's diet sounds much like my families before diagnosis.
You should both be tested. Keep your DD on gluten until all the testing is done and make sure they do blood work. In some cases a doctor will diagnose if the blood work is strongly positive without the scope. Talk to your GI about that. If you have been gluten free or gluten light it would be a good idea for you to get back on gluten for a while before you get tested to try and avoid a false negative. However if you become really ill when you reintroduce gluten you will know your body is telling you to stay away from it. Read as much as you can here and ask any questions you need to ask.
  • 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)

#4 Aprilelayne

 
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Posted 27 August 2012 - 12:53 PM

Thank you both for such quick responses.

I resumed gluten eating this month in anticipation for testing, but my daughter has continued with her regular diet. I have already completed four weeks back on gluten and it has been rough! I've second guessed my return to gluten because of the pain and discomfort daily :( But I know its solely to help both of us find out for sure.
I don't plan to restrict her limited likes until its medically necessary since so much of her intake is gluten based. For now she's eating whatever she will eat.

The scope is already on the table since they will be scoping initially for her reflux, so I'm at terms with the scope (its not her first time w/ sedation or anesthesia unfortunately). But thank you about the number of samplings they should be reviewing. I will have to pay attention or bring it up in discussion if they agree to. My plan is to push for the sampling even if they do the bloodwork beforehand, that if she's being scoped anyway there is no harm is sampling for it as well.

My husband's native languages are Moroccan and Arabic. So while I'm sure we have persons of french (his 3rd language), its the arabic language difficulties in explaining allergies and such. He understands that I can't eat a lot of foods and that I will visit the bathroom pretty much everywhere we go, but medically its hard to explain. For example, the lactose intolerance is lost on him as he jokes so many Americans claim to have allergies simply because they don't like something. That back home people don't have 'allergies' to milk or peanuts (I've argued that I'm sure people are allergic, but likely not as vocal about medicinal complaints.)
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#5 Aprilelayne

 
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Posted 28 August 2012 - 09:26 AM

Add another rough day for the kiddo to help push me along with this gastro referral.

Total diet yesterday:
-1/2 cup cheerios
-2 chicken nuggets
-3 dehydrated greenbean chips
-5-7 saltine crackers
-6 peanuts (literally six, I count because of choking hazards)
-2 mini rice cakes

and soymilk.

All day long between 6am and 8pm.

Despite that, her belly was so hard last night I don't know how she was sitting down.
Ironically she does not have any weightloss, she is healthy by all measurement standards (weight and height are 70% and consistent) but with a diet like that she should be constipated, yet she has diarrhea. She went through three outfits yesterday due to diaper mishaps.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#6 beachbirdie

 
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Posted 28 August 2012 - 01:26 PM

Add another rough day for the kiddo to help push me along with this gastro referral.

Total diet yesterday:
-1/2 cup cheerios
-2 chicken nuggets
-3 dehydrated greenbean chips
-5-7 saltine crackers
-6 peanuts (literally six, I count because of choking hazards)
-2 mini rice cakes

and soymilk.

All day long between 6am and 8pm.

Despite that, her belly was so hard last night I don't know how she was sitting down.
Ironically she does not have any weightloss, she is healthy by all measurement standards (weight and height are 70% and consistent) but with a diet like that she should be constipated, yet she has diarrhea. She went through three outfits yesterday due to diaper mishaps.


There is a chance your daughter could be sensitive to soy. There are quite a few here who cannot do soy products. Have you considered rice milk, almond milk, or perhaps coconut milk?

Just a thought...

Ahhh, interesting about your husband's thinking in regards to the allergies. In a way he is right, Americans claim to be allergic to things when in reality they are simply "sensitive". It is interesting that celiac seems to be on the increase in the Middle East. I'm not sure that knowing that would help your husband acknowledge the seriousness of the condition though.

A lot of us have had trouble getting our American husbands to grasp the "big picture" too. It is a long learning curve for them as well as us. It doesn't help that celiac is still relatively uncommon, though it is starting to receive more notice in the "mainstream". Hopefully he'll get on board with it before too long.
  • 1
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#7 mommida

 
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Posted 29 August 2012 - 01:40 PM

The right steps are for the endoscopy with biopsies to be first. You need enough damage to show up during the scoping. The type of damage can lead to a diagnoses and baseline for healing. (once the "allergens"/triggers have been narrowed down)

In young patients the symptoms for various things present the same symptoms.

symptoms of reflux, "D", and belly discomfort/bloating...
Celiac
food sensitivity/intolerance/allergy
Eosinophilic Gastrointestinal disorders (diagnosed primarily by the location of the eosinophil damage i.e. Eosinophilic Esophagitus ~ damage in the esophagus)
H. Ployri. infection
congenital defect
parasitic infection
overgrowth of yeast

(sorry I can't think clearly~ kids are shouting and being obnoxious right now)

Some things tend to co-exost with Celiac too.
  • 0
Michigan

#8 tarnalberry

 
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Posted 29 August 2012 - 02:48 PM

The other thing that strikes me is, with so little fiber, she may simply have very hard stools in her intestines (hence, the hard belly). I'm certainly not saying "this means it wouldn't be celiac", just noting that will play a role as well.
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#9 Aprilelayne

 
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Posted 30 August 2012 - 04:41 AM

The other thing that strikes me is, with so little fiber, she may simply have very hard stools in her intestines (hence, the hard belly). I'm certainly not saying "this means it wouldn't be celiac", just noting that will play a role as well.


That's what is the confusing part with her....despite the hard belly and lack of fiber in diet, she actually has diarrhea 90% of the time. I'd consider blockage except that she has D so much she has welts from the acidity.
Not to elaborate on my own IBS, but her D is very similar to mine in that its quite literally stomach acid or whatnot that causes welts.
I know mine is from the gastric spasms and rushing of the GI system. In her, I don't know if she has spasms or pain, she's probably used to the way her system works since it has been her whole life.

She was exclusively breastfed for 12months, but had light green liquid bowel movements the entire time.
At 12 months we introduced milk and quickly switched to soymilk due to the immediate constipation, gas, and discomfort.
Since 12-18months with attempted foods and soymilk, she continues to have green to yellow movements, not as liquidy but not a solid material at all.

We are in the early early stages of potty training and we have been able to put the BM into the toilet three times, but the stools float and leave a mess in the toilet.

eeek, its rather early here for an entire post on poop. Sorry!!
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#10 mommida

 
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Posted 30 August 2012 - 07:33 AM

We talk poop here all the time!
  • 0
Michigan

#11 Aprilelayne

 
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Posted 30 August 2012 - 09:45 AM

We talk poop here all the time!


So true!
and the need for a community or forum to talk about such wonderful things, right? haha
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#12 mommida

 
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Posted 31 August 2012 - 05:39 AM

When you stop to think about it, we are a closer group online than when we talk to our peers face to face. Seriously. I wouldn't really participate in a poop topic in person. Or I would only have it with a mom. celiac, or some one ill trying to find out if they should get tested for celiac. On-line I even clicked on a link to see what "normal poop" is supposed to look like.
  • 0
Michigan

#13 Aprilelayne

 
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Posted 31 August 2012 - 10:59 AM

Very true, I'm a member at another board and while we do have some celiac talk in there, I know them too well from other aspects of life to start talking about poop and gas.

At this point I have to wait until Tuesday to call, insurance snag on the referral to the pediatric gastro....but hopefully this time next week I will at least have my daughter scheduled for an appointment.

Yesterday had a small breakthrough though! She managed to eat three spoonfuls of rice. She's never done that before! I think its in response to the increased zantac dose for her reflux. Thats the only time we notice any improvements in her food choices, and the new higher dose was started on Tuesday.

Its going to be a long weekend waiting to deal with insurance bright and early on Tuesday morning.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed


#14 nora_n

 
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Posted 31 August 2012 - 11:44 PM

rockhard belly is not so uncommon with celiac either, or with casein intolerance.

Constant diarrhea is actually a symptom of severe constipation.

Casein intolerance and lactose intolerance and celiac for that matter, are not allergies
  • 0
gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#15 Aprilelayne

 
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Posted 04 September 2012 - 05:19 AM

I've been reading here about constipation and that the constant diarrhea may be indicative of constipation?
I'm curious as to when she would have ever gotten constipated though, she's had a total of three solid bowel movements in her life. They were the week she graduated to whole milk that she drank for three days when I realized how distended her belly got and her foul gas.
I assume only an ultrasound would find if its constipation?

Granted after this weekend I'm not so sure about gluten anymore, well that it may be a single cause. She ate quite a bit this weekend, of course it wasn't anything out of her norm, just a lot more of it. I'd be pleased except that she had some horrid movements that have created some large sores on her bottom. She now has open little sores about five of them and other markings like a food allergy.
I've recreated the food log as best as possible for this past weekend to try and document.

At this point, I just wish there was a magic food allergy test or something to figure out what is causing her pain. We can't wipe her bottom or give her a bath without a fight and tears.
  • 0

(Texas)

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

                                 3/2013 - soy allergy confirmed





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