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Daughter Has Symptoms, How To Proceed?


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6 replies to this topic

#1 justlovlie

 
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Posted 06 July 2013 - 09:52 AM

Hello, I'm new here. My 3yo daughter has had some minor digestive issues for quite some time that have recently exacerbated. Our family doc suggested cutting gluten and dairy for a month, then reintroducing to test it out. I've long suspected that grains may be an issue, so we were all for it. We've been very consistent with the gluten and have done fairly well cutting dairy for a little over a week. I've already seen improvement in the consistency of her stool and other symptoms, though her tummy ache complaints haven't totally gone away.

Yesterday she happened to find some Eggo waffles buried deep in the freezer. I didn't even know they were there! She ate two, frozen, while I was in another room. Not surprisingly she vomited 4 times in the middle of the night last night amd has had diarrhea 4 times already today, by lunch time. (Ahh, ok, make that 5, as I was writing this..)

Now I'm reading that perhaps we should have some testing done before we change her diet. Our family doc is somewhat 'old school' and will likely just say, ok you know what it is, just avoid it. But it seems like it may be prudent to know if it's a sensitivity or true celiac disease. The only problem with keeping her on gluten is that her diarrhea issues have become a real problem at her preschool, so I'm keeping her out until it's cleared up. It's doable, but not ideal, and of course seeing her puking and pooing so much lately is not fun. The thought of intentionally keeping her on her old diet in the meantime knowing it could be really damaging is not fun.

I'm on the early end of the learning curve with this and would love any feedback. Thanks!
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#2 justa

 
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Posted 06 July 2013 - 04:54 PM

We had similar issues and were offered straight to endo so we did that. < Easiest thing for him and he got a popcicle He has intestinal inflammation , minor damages and been diagnosed an odd "borderline celiac"

We have been taken off gluten and did a celiac pediatric panel which came back negative but I haven't seen the results. At least this point we have to wait and test wait and test... Not everyone fits the cookie cutter I guess.

I personally would req an endo and rule out damage and inflammation first. Mine isn't 3 yet and had some. It isn't bad for them at all.
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#3 frieze

 
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Posted 07 July 2013 - 06:52 AM

Hello, I'm new here. My 3yo daughter has had some minor digestive issues for quite some time that have recently exacerbated. Our family doc suggested cutting gluten and dairy for a month, then reintroducing to test it out. I've long suspected that grains may be an issue, so we were all for it. We've been very consistent with the gluten and have done fairly well cutting dairy for a little over a week. I've already seen improvement in the consistency of her stool and other symptoms, though her tummy ache complaints haven't totally gone away.

Yesterday she happened to find some Eggo waffles buried deep in the freezer. I didn't even know they were there! She ate two, frozen, while I was in another room. Not surprisingly she vomited 4 times in the middle of the night last night amd has had diarrhea 4 times already today, by lunch time. (Ahh, ok, make that 5, as I was writing this..)

Now I'm reading that perhaps we should have some testing done before we change her diet. Our family doc is somewhat 'old school' and will likely just say, ok you know what it is, just avoid it. But it seems like it may be prudent to know if it's a sensitivity or true celiac disease. The only problem with keeping her on gluten is that her diarrhea issues have become a real problem at her preschool, so I'm keeping her out until it's cleared up. It's doable, but not ideal, and of course seeing her puking and pooing so much lately is not fun. The thought of intentionally keeping her on her old diet in the meantime knowing it could be really damaging is not fun.

I'm on the early end of the learning curve with this and would love any feedback. Thanks!

if the child will be going to public school, she will need the diagnosis for accommodation.


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#4 nvsmom

 
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Posted 07 July 2013 - 08:05 AM

Welcome to the board.

 

The fastest testing to do is the blood work.  If you requested tests from your doctor, it could be done in a few days. Blood tests for celiac are not as reliable in children (possibly because they haven't been alive long enough to build up enough autoantibodies in order to be detected in the tests) but it is the least invasive. Also, blood tests require a patient to be consuming gluten for a couple of months in order to be accurate, so if she goes gluten-free before blood tests are done, then she may end up having to consume gluten even longer in the long run.

 

The full celiac panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA

AGA IgA and AGA IgG

 

The first three tests are positive when damage isbeing done to intestinal villi. the first is the doctor's darling. The DGP tests are new and thought to be the best for young children. The EMA test indicate advanced damage is being done and is rarely positive in children.  Total serum IgA is a control test to make sure she makes enough Immunoglobulin A for the IgA based tests to be accurate; about 5% of celiacs are deficient in IgA.  The AGA test will test for sensitivity to gliadin and is thought by some to work for both celiac and non-celiac gluten sensitivity (NCGS) testing.

 

The more tests run the better as not all tests are great at detecting celiac disease in celiacs (sensitivity).  This report, on pages 11-12, discusses the tests and their accuracy:

 

The endoscopic biopsy usually requires two weeks on gluten prior to the procedure, for accurate testing. I did not opt to do that test myself; I'm sure others around here can help if you decide to go that route.

 

Best wishes!


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#5 justlovlie

 
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Posted 07 July 2013 - 12:35 PM

Thanks so much for the great info. My plan at this point is to call some pedi GI docs for an appt, or ask our family doc for the blood tests if I can't get her into the gi soon.
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#6 justlovlie

 
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Posted 31 July 2013 - 12:14 PM

Hi all...just thought I should update here. We saw a great pedi GI specialist who said it really sounded like celiac by our description. She ordered quite a lot of blood and stool labs looking for that and everything else under the sun just in case. They're finally all back...zero indicators for celiac, which was a surprise to the doc. She does have a moderate wheat allergy, though, and thankfully no other food allergies that were tested for. (I think she looked at lactose, casein, and soy, not sure about eggs).

I haven't seen the values on all the labs yet for myself and I do trust this doc's judgement, but I am left wondering if the labs were truly accurate. My daughter was totally off gluten for almost two weeks, then back on 'gluten-light' for a week prior to testing. I guess at this point it doesn't matter much as the diet is similar....but there is some lingering doubt. Her symptoms don't seem typically 'allergic' to me, but I know that's not abnormal in itself. We have a follow up with the GI in a couple of months and I will have many questions for her then.

Thanks again for all of the info...much appreciated!
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#7 greenbeanie

 
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Posted 31 July 2013 - 02:22 PM

Thanks for the update! It's great that you have a thorough doctor. If she does have a wheat allergy, it would be good to get an epi-pen prescription just in case she ever has a severe reaction (though hopefully you'll never need to use it).

My own GI said that atypical wheat allergy symptoms and atypical celiac symptoms often mimic each other. My daughter has pretty immediate allergic-type symptoms from gluten, and she has celiac but no wheat allergy. I have 30+ years of strong celiac symptoms with more delayed reactions, but my own celiac tests were negative and the GI thinks I have an atypical wheat allergy instead. Who knows what's really going on...but the upshot is the same - never eat the problematic food! I hope your daughter is feeling better.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

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





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