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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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

8 Year Old Daughter, Suspected Celiac?
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Hello,
My 8 year old daughter has had issues with her stomach for about 9 months now. Mainly, bloating and morning nausea, which I stupidly attributed to nerves about school, because we moved 3 times in 2 years. Over the last few months, she has had a few bouts of morning vomiting (it's always just bile, happens maybe 3-4 times, she falls asleep and then wakes up ravenously hungry) with the most recent two times within a week of each other. I finally decided that something other than nerves had to be to blame....so off to the pediatrician we went.
She mentioned a myriad of possible culprits (gluten or celiac was one), ran a bunch of tests on her, and the only thing that came back out of the ordinary, was her alkaline phosphatase reading "below low normal".  I have not spoken to the doctor as of yet, because I saw the blood test results on her account last night. Upon further research, I narrowed it down to a few possibilities... hypothyroidism (she doesn't have the signs... I have this disease), nutritional deficiencies (could be, however she is my BEST eater out of four children) or Celiac disease. I tested negative for this 4 years ago, but have been told I am probably gluten intolerant, so I eat very little to no gluten, however I do buy foods that contain glutens for the rest of the family. 
I am wondering what you all think... and what testing should I be looking for, based on what we're looking at right now. 
Her other symptoms are bloating, gas, pale, redness around eyes, and occasional eczema. She is in the 50th% for height and weight, consistently. She seems to have a bowel movement fairly regularly, but I haven't checked them to see what they're like.  She previously had a tree nut allergy that was diagnosed at the age of 2, and was cleared of it two months ago, after all the testing came back negative. I still don't allow her to have nuts though, just in case. 
I am worried sick about her, as she seems to be sick an awful lot, and I just want my sweet girl to feel well again.
 

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Ask to have a full celiac panel done (i don't have the list on me at the moment, but i have no doubt someone on here will have it :)). If it comes back positive, then the next step would be the endoscopy to biopsy the small intestine. There is also the genetic test that can look for the two genes that are commonly found with celiac (HLA-DQ2 and HLA-DQ8). However, the genetic test alone cannot be used as a diagnostic, as 20-30% of the population carries one or both of the genes.

 

There is also NCGI (non-celiac gluten intolerance) which mimics many of the same symptoms as celiac, outside of the auto immune response.

 

Do not remove gluten from her diet until all of the tests have been ran.

 

If for whatever reason the tests are inconclusive and come back negative, feel free to test the diet for a good 3-6 months to see if there is any improvement.

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Ask to have a full celiac panel done (i don't have the list on me at the moment, but i have no doubt someone on here will have it :)). If it comes back positive, then the next step would be the endoscopy to biopsy the small intestine. There is also the genetic test that can look for the two genes that are commonly found with celiac (HLA-DQ2 and HLA-DQ8). However, the genetic test alone cannot be used as a diagnostic, as 20-30% of the population carries one or both of the genes.

 

There is also NCGI (non-celiac gluten intolerance) which mimics many of the same symptoms as celiac, outside of the auto immune response.

 

Do not remove gluten from her diet until all of the tests have been ran.

 

If for whatever reason the tests are inconclusive and come back negative, feel free to test the diet for a good 3-6 months to see if there is any improvement.

Thank you! 

If someone could post or send me the link to the panel that I should request, that would be fantastic. Also, should her pediatrician go ahead and do this, or do we need a referral to a pediatric GI? I am trying to hold off doing that, because it's at least an hour's drive to get to the closest one. I would love to be armed with all the knowledge I need prior to talking to her doctor tomorrow, so I know what to ask for. I already planned to ask for the thyroid panel and some specific vitamins/minerals, but a list would help a LOT!!!

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Did some digging and found them:

 

total serum IgA

ttg IgA and ttg IgG

EMA IgA

DGP IgA and DGP IgG

AGA IgA and AGA IgG

 

I believe that's all of them.

 

Regular doctors can do the blood test. :)

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Did some digging and found them:

 

total serum IgA

ttg IgA and ttg IgG

EMA IgA

DGP IgA and DGP IgG

AGA IgA and AGA IgG

 

I believe that's all of them.

 

Regular doctors can do the blood test. :)

Thank you very much. I made a note of them!!!

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I agree with everything Shadowicewolf said, especially about trying the diet out for her no matter what the results. My kids all tested negative for celiac but we switched them to gluten-free anyways; two of my three boys have shown real health improvements since going gluten-free. I don't have an official label for them but we seem to be on the right track which is all that matters in the end, right?

 

Make sure you get copies of all of her labs. doctors are not always great at interpreting lab sheets so it's a good idea to do your own double checking!  Best wishes.

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Get the refferal to a pediatric gastroenterologist.  There is a list of suspects that present this way.

 

H. Poyri

hernia

parasite infection Celiac

Eosinophilic Esophagitus

congenital defect

sorry I'm forgetting a few others....

 

All of these conditions can be ruled in or out by having an endoscopy with biopsy.  You can also get a baseline of what type of damage has happened in the upper GI tract.  (leaky gut syndrome)

 

My daughter was diagnosed probable Celiac when she was 16 months old (too ill for endoscope, positive Celiac panel, positive for both DQ2 and DQ8 Celiac genes, and improvement on a gluten free diet) and then Eosinophilic Esophagitus when she was 6 years old.

 

Ask further questions with the ped. gastro. about the "suspected conditions" and what this doctor is going to be looking for during the scoping.  i.e.  If the doctor doesn't order the pathology report for eosinophils, the red dye will not be applied and the amount of eosinophils will not be counted.    The diagnoses is made in part by how many eosinphils are counted along with amount of damage.

 

In the time being (it can take about 3 months for an opening with a ped. gastro.) keep a very detailed food journal.  Include foods (with all ingredients ~ so save labels, amounts, symptom check, BMs, where food was eaten, activities of the day (can it be an environmental sensitivity), air quality, and take note of hygeine/cosmetic products.

When looking for "reactions, it is important to remember in the case of eosinphils, once activated, can reamain active for 12 days.  All "reactions" are not "true allergies".(with histamine involvement).  In the case of Eosinophilic Esophagitus, "triggers" can also be airborne, not just consumed food proteins.

 

In the case that all testing would be negative, (and after all testing is complete) please try the gluten free diet.  Non Celiac Gluten Intolerance is starting to be recognized as a very real condition by the medical community.  This means, in my lawman's terms, current testing can not prove WHY (and exactly where in the body to look) but gluten is causing severe distress to the body.  It seems to mainly adversely affect nuero activity.

 

Also keep in mind there is growing evidence that a gluten free diet can be helpful to any patient with auto-immune disease.

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Thank you... I haven't spoken with the pediatrician yet, but I am so anxious to, to find out what her suggestions are.
My daughter ate toast this morning and seems fine, so I just don't know what to think sometimes. Her stomach issues though, always seem to present themselves in the morning, and the rest of the day, she seems to be fine. Is that something others encounter? I have noticed that she has been very pale though, for years. I thought it was due to her Irish heritage from my side, but even in the summer, she will get some color, but behind the color, is a very pale base...whereas, I turn a golden color with a speckling of freckles. My husband is very dark complected... I thought he was middle eastern or greek when we first met, but he is German! ha. 

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I am getting a little worried about her... I am not sure if this is related or not, but she developed a fever Friday, which she still has today (Monday) although it is now low-grade. Over the weekend, it spiked as high as 105, but I was able to bring it slowly back down to 101-102. She has zero appetite (doesn't even want anything chocolate, which is odd) and has lost 4lbs, which is a lot considering she only weighed 54 to begin with. 
The doctor is supposed to be calling me back sometime today, but in the meantime, I feel like I'm going to go nuts. 
How does everyone cope with the stress of all of this? I can handle it when there is something wrong with me, but I almost feel physically ill thinking that my child is sick.

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I am a mother of 7.  I learned in early motherhood that Fever is your friend.  The body is designed to heat up to kill off invaders.  Not too much makes me squirm anymore.  But a fever of 105 is very high.  Mainly I would try to get fluids in.  I  recommend coconut water, which is very hydrating.  Watch for signs of dehydration.  .  I read a book "How to Raise a Healthy Child in Spite of Your Doctor."  It made me feel more confident about knowing what to do.  Others around you have likely recently dealt with the same thing. They may be able to give you a clue as to whether they had such a bug and how soon it went away.  Mothers and Grandmothers may also have known similar illness'. I  think anyway it is some kind of tough bug.  Usually high fevers do not last very long.  If they go down, I don't worry.  I let them do their work.

 

I always imagine the worst pain I ever had as my child cries out in pain.  I know what you mean about that!  But the mind tells me that the body can usually  heal  in time. Take some time to sit with her and read some books.  Check on her often.  She needs you at this time. 

 

I hope the doc will call soon and let you know what they think.  It is likely they would know what is going around.  I hope you will feel better soon, and she will too!

 

***

 

Diana

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So, the doctor says that the alkaline phosphatase test was normal, even though it says it isn't... that the values were based on an adult. I'm not sure I buy that. I'm going to research some more.
I am sure she has a viral infection. One of my other kids had something similar to this about 10 years ago with a high fever that lasted for 5 days and no other symptoms, but I guess she just had me worried because of the other stuff that's been going on. 



They ran this test on my daughter, who is 8 years old: ALP SerPl-cCnc
The range was 184-415
her result was 154
 I thought adult ranges were lower, so I am a bit confused and still concerned.
Edited by Lisa4kids
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I cross referenced, and adult ranges appear to be around 40-120 whereas children's can vary, but are anywhere from 130-500. Since this test states that the range is 184-415 and her age is clearly marked on the paper, I feel that I need to probe into this further. She clearly has stomach issues, and I don't feel at all satisfied being told to just "wait and see what else happens" when she has already suffered through 8-9 months of daily nausea with 4-5 vomiting episodes.
She is ill right now... has had a fever ranging from 100-105 going on 5 days now/has lost weight/has absolutely no appetite/her stomach hurts!  and the doctor didn't seem that concerned about that either, so I'm taking her to urgent care tomorrow. Time to find a new ped practice, apparently.

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I can relate.  My 7 year old was just officially diagnosed with Celiac in February.  We have been on the wait and see method for a year.  Thankfully in our case, my daughter wasn't sick, she just stopped growing.  While it is SO tempting to just start her on a gluten-free diet to see if it helps, if you want an official diagnosis, then you should keep her on a regular diet so that she will test positive down the road.  That being said, I am not so sure why an official diagnosis would help.  In your case, I would be tempted to try a gluten-free diet, however, if that helps, but isn't the route of the issue you could potentially miss something important.  I hope you get it all figured out soon.  I know how stressful and heartbreaking it is to deal with our kid's sicknesses.  I feel your pain, and I wish you and your daughter the very best!

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OK at 105 you need to start trying to get that fever down.  Because my daughter has had the "vomitting cycle" and trying to take fever reducers by mouth just aren't an option some times.  (The hospital has given Tylenol suppositories, which you probably won't be able to get.)  A cool water bottle/ice pack under the armpit does work.

 

If she is currently in a state she will vomit, get to an urgent care they can give an injection of anti nausea drugs.  If she is already showing signs of dehydration, go sooner rather than later for an I.V.  The more dehydrated kids are, the harder it is to get an I.V. started.  The last service your ped can do for you is send a courtesy call to the emergency room that you are coming and to get the I.V. going with your ped's orders.

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I had been staying on top of the fever thing the whole time... no worries there. Round the clock meds, and cool compresses on her forehead and neck.. and lots of cuddles and backrubs! I am SO exhausted!!! Her fever finally broke and she is back to normal today. She wanted to eat, so she had chicken noodle soup and a few other bland things, and she seems pretty good, except tired. 

I am still wondering about the test... does anyone have any input on that. 154 in a range of 184-415?   And the doctor insisting that was an adult range, but everything I read stated adults have a lower level of alk phos and therefore lower values. I am going to just keep an eye on her for now, and if she has any more vomiting episodes, I am going to try to get her seen by someone else. I don't necessarily want to go straight to the ped. gastro because I think some of the preliminary testing could be done here vs. having me drive all that way. 

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You know, my son hasn't been growing that well in the last year and a half.... I just thought his hormones were waiting to kick in... Now I wonder about him too.

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