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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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TammyTE

How To Tell If Food Affects Child?

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I have five children. We started down the "dietary issues" path several years ago when I discovered that artificial dyes and preservatives affect my oldest two. That was 2007.  Over the years we have done various elimination diets trying to figure things out. But most of the symptoms were behavioral and then some things like bedwetting, under eye circles and eczema. By the time I really suspected grains I had just had my fifth child.

 

She seems to be the most sensitive. She is also allergic to peanuts and eggs and might also be allergic to avocados but I haven't tested that yet. She is 3 1/2 years old. I used to notice that her poop seemed "off" when I would change diapers. It was just a weird consistency, hard to explain.

 

When she accidentally gets something with egg in it she will get eczema behind her knees. It goes away within a few days as long as she doesn't eat that again. Last summer she got some behind her knees and I figured she must have gotten something with eggs. But it didn't go away. It got worse and worse and we couldn't figure it out. By the end of summer her legs were covered and it was going to her arms and body. Her legs were cracked and bleeding. I finally figured out it was Quaker Oats. My other dc were eating them but not showing any major problems. She was potty trained so I wasn't seeing any poopy diapers to notice anything. Once we removed the oats and switched to BRM she began to clear up within the week and by 4 weeks she was completely clear.

 

About a month ago she started getting eczema behind her knees.  I "knew" it was food related but could not figure it out. It was getting worse and worse. I finally figured out we had bought a new brand of rice. Contacted the company and it is packaged in a facility that processes wheat. So I'm pretty sure that is the culprit. We took that out of her diet and I found some other rice.  That company can't guarantee it's gluten-free though. (ugh)  Her eczema isn't going away though!  It's only just now been a week so I am hoping that it will get better soon.

 

If you have read this far thank you!  All that to say....HOW do we KNOW what is going on with our little ones?  She has never said to me that her belly hurts.  But sometimes I will notice "streaks" on her underwear and I am thinking that maybe she is getting the weird mushy poop. I don't seem to notice a problem until it's been in her system for a good while. Looking back I wonder if some behavioral (mood) problems are from gluten but I'm not sure. I don't know that she knows what feeling good is like. Ya know?

 

Would love some tips!

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My only symptom was anemia -- so "belly aches" is meaningless. There are over 300 symptoms for celiac disease. Here is a link to the University of Chicago's celiac website that explains testing etc.

http://www.cureceliacdisease.org/medical-professionals/guide/factsheets

Perhaps she can be tested for celiac disease and at least rule that out? Then find a good allergist?

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She had the  blood test in 2012 after being on grains for four months. It did say positive for gluten intolerance but not celiac. The Nurse Practitioner said that I should treat her as true celiac because she had ingested such a small amount of grains for such a small amount of time in her short life at the time. She really believed that my dd was celiac. I took her to a pediatric GI doctor because I thought maybe that's what I should do. The GI doctor laughed at the test and said "they" don't use those anymore and my dd was not even gluten intolerant....sigh. 

 

So I have just been muddling my way through, basically treating all the kids the same when it came to gluten. I tried to find gluten free but as long as it wasn't in the ingredients and was something that is naturally gluten-free I went with it. Well, my youngest DOES seem to be  more sensitive than the others, just like the first NP said. 

 

I'm just having trouble knowing what actually affects her. Her symptoms so far have been the weird poop and eczema.  When she was younger she was very thin and gaunt but I think taking peanuts and eggs out of her diet helped with that problem. Now she is a chunk and overall seems healthy.  She does have weird poop at times but there is no rhyme or reason that I have figured out. Partly because I don't always see before she flushes. Now, my 6 year old is still quite small and has had broken bones, dislocations and seems overall frail compared to my other kids but I don't know if that's just "her" or if it's related to gluten or something else. They all pretty much eat the same foods (except the egg and peanut thing for youngest).  My 6yo tends to eat less than everyone else. I dunno. I'm just at a loss as to how to know what hurts them and what doesn't. Do I just do my best and wait till she is older so she can tell more?

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There is no test for gluten intolerance which is why the Dr. said that.  If she is not eating gluten now there is no test that can be done to determine if she has Celiac disease or not. "They" suggest a MINIMUM of 6-8 weeks on gluten for testing to be considered accurate. 

 

Also, eczema doesn't mean you child has an allergy.  If eczema is the *only* (I say it like that because it is a huge issue and no fun to deal with) then it's more likely an intolerance.  Things like hives, difficulty breathing, vomiting, diarrhea and so one are signs of an allergy.

 

The best way to get to the bottom of things when it seems really vague is to keep a very detailed food log.  Record EVERYTHING that goes in, times, what happens and when after.  Sometimes that's the only way to connect all the dots.  

 

Hope you can get something figured out! It's so frustrating :(

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I'm sorry that you're dealing with these issues! It sounds like no fun at all!

 

Is gluten challenging your kids and getting full celiac panels for all of them an option, preferably with a doctor that will seriously explore that avenue? Being in dietary limbo land is no fun at all. My kids had serious eczema when they were little and I attempted to take them gluten free at that point. Now we're reintroducing gluten and surprisingly, gluten really isn't causing any noticeable skin issues.

 

Your kids issues sound serious, particularly the broken bones.  Have you ruled out genetic disorders and other diseases that may have caused the broken bones?

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The test that was done was "celiac and gluten sensitivity from Genova Diagnostics. They tested:

 

Biomarker:                    Result:                       Reference Range

Total IgA                      68   Sufficient            17-94

IgA (tTG IgA)             <1.2  Negative              <4.0 U/mL

IgA (DGP IgA)              2    Negative              <20 U/mL

IgA (AGA IgA)               3    Negative              <20 U/mL

IgG (AGA IgG)             34   Strong Positive     <20 U/mL

 

 

It said "patient results are consistent with gluten sensitivity. 

 

There is a chart to flow through at the bottom.   She had enough in her system to make the test work. Her tTG and DGP were both negative so that meant she was NOT celiac.  Her AGA was positive which meant there was gluten sensitivity. 

 

My other kids had similar results but this NP said because my youngest was so young and had only eaten gluten for such a short period of time she believed my dd was going to be more sensitive than the other dc. Which seems to be the case. 

 

So are you saying this test is not legit?  I'm not trying to argue. I genuinely want to know what you think. :)

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It looks like they ran a celiac panel and she came back strongly positive on one of the tests that is less specific to celiac. So, they didn't refer you for any follow up?

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Does she drink milk/eat dairy?  That was a huge eczema trigger for my son--in conjunction with his asthma.  I would have her checked for both asthma and lactose intolerance.  This is also the kid that refuses to get tested for Celiac so he may or may not have that as well.

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Is there a medical test for lactose intolerance?

 

Yes, you have to not eat certain foods, much like prep for surgery, and then you do breath tests.

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Your daughter is now 3 1/2, but I'm not sure how old she was during the testing.  (Testing really is not as accurate for children under 2 years old.)

 

Your child would have to be eating gluten for any further Celiac testing.  There is genetic testing that can be done on a gluten free diet, but that is NOT a "gold standard" diagnoses.  Most doctors/people will just consider that as a "genetic possibility" for an autoimmune disease to be "triggered" by environment.

 

I also suggest a food journal.  I would like to add, even the activities of your child's day be included.  i.e. playing with Playdough at playdate with Sally, visiting the petting zoo, or visit to "cat lady" house.  Different environments may be the "allergen" factor, or is it the activity?  i.e. library craft day- week 1- glue popsicle sticks, week 2 * paper mache project, week 3 origami with * graham cracker snack (the asterisk marks gluten - one situation eaten and one situation just intended for skin contact.)

 

There are many different types of "reactions" the body can have & these different types of reactions have different lengths of time.  (eosinophilic reaction can stay active for 12 days)

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After the initial blood test we went to the GI doctor thinking that's what we should do next. She laughed at us so we haven't seen anyone specifically about it since.  Last Summer we had an appt with a pediatric dermatologist but I figured out the oat thing the night before. We went to the appt anyway and that doc agreed that it could be the oats, wrote us a script for steroid cream that we never filled and we left. Took her of the Quaker Oats and switched to BRM and she cleared up quickly.

 

She hasn't had any eczema until we switched to this new brand of rice, so I am 99% sure that it's the culprit.

 

She was just turned 2yo at the original test and had been eating something with gluten every day for 4 months prior to the test.

 

We eat dairy quite often and she doesn't seem to have any problem with it. I used to be lactose intolerant (nothing huge. Just lots of mucous and sometimes bowel issues when I ate it.) but since I went gluten-free with the kids I can eat dairy with NO problems at all. I thought that was interesting.

 

I have done food journals and that's how I figured out the eggs, peanuts and possibly avocado. It was just easier when she was in diapers since some of her stuff is poop related. LOL  I guess I can do a food journal again.

 

Oh and as far as the environmental factors...yeah, the eczema started during county fair week. She had been visiting the goats and horses and chickens. Had gotten a lemon shake up at a booth.  It took me a while to figure out the rice because I was thinking maybe it was the fair. I contacted the lemon shake up booth to triple check ingredients. It was driving me nuts. Then I remembered we had switched rice.

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I have been able to find wild rice which is not processed with wheat.  It is a high cost product, though.  I would also check with the producer to ask about any other products they process.  You could switch for some time (elimination diet) and try other rice again.

 

Eczema is tricky.  There is always the possibility that more than one food causes it. I dealt with eczema for my youth and many things seemed to make it worse.  Nothing I removed seemed to make it better.  BUT I have allergies to the few foods that I left when I eliminated everything else.  Diet seems so complicated, but I think worth while to try to figure out.

 

 I am a farmer (to some extent) and we feed our chickens and goats grains.  I believe that it is possible to get the dust in the face while at the fair.

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Alter Eco rice is certified gluten-free.

 

IgG: http://celiacdisease.about.com/od/celiacdiseaseglossaryaf/g/AGA-IgG-blood-test.htm

 

It is hard enough to tell what is going on with yourself.  It is much harder with a young child.  Maybe ask to have a look before she flushes the toilet?  It is going to be a challenge but you sound like a determined woman.

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Ha ha....determined woman. Yep. That's me. :)  Thanks for the encouragement.  I was hoping to find some really easy fix that I had possibly missed. ;-)  I do try to take a peek before she flushes. Thankfully she forgets to flush and I honestly don't try to change it because I at least get to see it! One of the zillion things I never thought I would be doing as a mother. LOL

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