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18M Old - With Genetics Against Her
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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.

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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.

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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.

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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.)

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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.

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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.

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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.

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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.

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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!!

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We talk poop here all the time!

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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

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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.

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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.

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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

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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.

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I'm at my wits end....finally got an official appointment with the peds gastro.

October 15th, 40days away!!

I have an 18month old with open sores and raw skin from diarrhea and we are supposed to stay as-is until seen??? I'm sorry, I can't purposely keep her in pain! I just don't know what it is or how to fix it at this point if its celiac/gluten or other food allergies or gastro complications.

I have an outstanding call to the peds triage nurse and the gastro triage nurse to try and see if we can get seen before then.

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I've read this thread and must say i feel terrible for you and your daughter. You are trying everything you can at this point. Keep it up.

One suggestion, if you haven't already started this, is to not wipe her bottom but to rinse it with cool water. Also, if you can get them, try having her wear some cotton cloth diapers called prefolds around the house - without a cover.

My son had the same acidic d periodically and the best thing I did was to rinse him off in the sink, pat dry, and let him run around airing it out as much as possible. I didnt wait for bm's - i did it every time he urinated as well. I probably changed him every 30 minutes. Exhausting. I used Weleda calendula baby diaper cream, too. Calendula really helped his skin.

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I've read this thread and must say i feel terrible for you and your daughter. You are trying everything you can at this point. Keep it up.

One suggestion, if you haven't already started this, is to not wipe her bottom but to rinse it with cool water. Also, if you can get them, try having her wear some cotton cloth diapers called prefolds around the house - without a cover.

My son had the same acidic d periodically and the best thing I did was to rinse him off in the sink, pat dry, and let him run around airing it out as much as possible. I didnt wait for bm's - i did it every time he urinated as well. I probably changed him every 30 minutes. Exhausting. I used Weleda calendula baby diaper cream, too. Calendula really helped his skin.

Thanks Prickly,

We are doing just that, I'm using luke warm water in the basic squirt bottle (from the hospital at her birth actually) and the baby washcloths to help clean her up. Then its naked time, which is the more difficult thing in that we have carpet throughout the house and well, we are cleaning up diarrhea puddles every so often. :( Just twice so far, but obviously she can't control it like she can her urine.

End of the day yesterday was with the gastro nurse returning the call upset that the ped hasn't done any initial testing and said she's on the cancellation list but to get back with her ped to at least get initial testing and a weight check if she's lost any weight. To check her for anemia and vitamin levels to get a head start on the gastro testing. She said we could also consider going the allergist route at the same as the gastro route to see if she has any true food allergies.

So she does have an appointment with the ped on Monday.

Yesterday's dinner was one chicken nugget.

and 1/2 cup dry honey nut chex (not intentially gluten-free...just the type we naturally eat)

She did however try fruit cocktail for the first time yesterday, so that was a milestone! I'm glad to have texture milestones to prove to someone that there is something more than a psychological reason for her feeding issues.

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oh wonderful news!!

Gastro nurse just called about a cancellation for tomorrow!!

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Good news! Seems my daughter's gastro is pretty proactive!

Today was an initial consult, agreed something is off. She took a lot of family history, loved my food logs and summary I prepared and ultimately let me ramble about my lifetime of gastro ailments.

Before we got to talk about my daughter she recommended me getting tested for celiac based on what I had shared. She suggested waiting until November though since I just started back in gluten in August after five months off.

We started the tested bonanza on my daughter it felt today.

Abdominal X-ray for a view for physical blockage or constipation.

CBC

Sedimentation rate

Immunoglobulin A

C-reactive protein

TTG IgA

Immunoglobulin E

Vitamin D

Comprehensive metabolic panel

Ova and parasites w trichrome stain

Pancreatic elast, fecal

Fecal fat qualitative

Stool culture

I have to take care of the stool samples this weekend, but the X-ray and blood was today.

In the meantime she's given samples of probiotics for her and recommended fiber powder once a day.

It seems like a lot, but she rattled them off so quickly I think we got at least half of the tests this site recommends.

Now we wait and see.

Pancreatic elast, fecal

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Good news! Seems my daughter's gastro is pretty proactive!

Today was an initial consult, agreed something is off. She took a lot of family history, loved my food logs and summary I prepared and ultimately let me ramble about my lifetime of gastro ailments.

Before we got to talk about my daughter she recommended me getting tested for celiac based on what I had shared. She suggested waiting until November though since I just started back in gluten in August after five months off.

We started the tested bonanza on my daughter it felt today.

Abdominal X-ray for a view for physical blockage or constipation.

CBC

Sedimentation rate

Immunoglobulin A

C-reactive protein

TTG IgA

Immunoglobulin E

Vitamin D

Pancreatic elast

That's great news!

Be aware she didn't order a complete Celiac panel. If those don't come up + I'd request more tests and/or endoscopy.

Tests: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

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Thanks! I thought we missed some.

you posted while I edited but I thought the same thing.

This should at least give us something to work with for now I hope. I'm focused on the acidity of her diarrhea right now since that seems to be causing her so much pain.

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Thanks! I thought we missed some.

you posted while I edited but I thought the same thing.

This should at least give us something to work with for now I hope. I'm focused on the acidity of her diarrhea right now since that seems to be causing her so much pain.

It's a very good start, and most importantly you have a doctor who is listening.

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you definitely need the new deamidated gliadin tests.

Here they do the ttg IgA and the DPG IgG as screening tests.

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I should have made my username "PoopMom" ....or change it after this weekend at least!

The samples were not easy, but I managed.

We started the probiotics on Friday night and fiber therapy Sunday morning.

She has been great and eaten some better choices this weekend, more fruits and veggies yesterday than in an entire week! I was hopeful that we may have turned a corner.

Uh no.

This morning was a wide wake up call that things are working, but not correctly.

I won't get into the gory details, but it involved a bath for little one at 6am and a load of laundry including bed sheets, mattress pads, dolls, everything. I had to scrub her down and wash her hair and hands, literally EVERYWHERE.

The mixed status:

good for increased food options and healthy choices

bad for amount of poop and its looseness.

(dropping off 5 stool samples this afternoon)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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