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#1 of 53 Old 03-29-2014, 11:29 AM - Thread Starter
 
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I'm hoping that some of you well intoned mamas could share some info on what type of gluten test I should be looking into.

I have two sons, 6 and 1.5. Ds 1 has always had dark circles under his eyes, as have I, and it looks like ds 2 is getting them now as well. I also believe that ds 1 has post nasal drip, though not year round. Some other reasons in thinking he had a gluten issues he has nervous tics, though could be hereditary, and pimples on his rear cheeks. He used to be an awful sleeper, tossing and turning, nursing every hour.

Ds 2 has only recently had wheat, about a half piece of toast for four days in a row when I saw about five little pimples on his back and thigh, so I stopped. We've been holding off gluten with him because he had blood in his stool when he was 4 weeks old that lasted for a month and again at 6 months old that lasted for a month again. I have been gluten free for the most part since it all started because I was nursing.

I'm fine keeping them gluten free but I've recently read that a school will need an actual diagnosis from a doctor?! We're homeschooling for kindergarten right now but plan on public school next year.

My question is, if we get tested, will they have to be consuming wheat? If so, for how long? Is that only for a celiac type of diagnosis? I'm thinking we're all sensitive because we have no abdominal pain. Well, at least myself and ds 1.


If you've made it this far;), please inform me of what certain tests are called, what they test for and if we have to be consuming gluten? Also blood, stool, scratch: what's the most accurate?

Thank you!
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#2 of 53 Old 03-29-2014, 12:17 PM
 
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Yes, he needs to be consuming gluten--wheat, barley, rye.  From one source, I was told one month for celiac testing.  Blood is a good start, and a positive blood test usually means positive for celiac but a negative test is not definitive.  If you had a negative blood test and no abdominal pain or no other classic symptoms of celiac, I would personally not take the biopsy test which is the definitive test.  You can also look for the genetic marker for celiac, but having the marker does not confirm if you are actually suffering from it.  

 

A scratch test would test only for a "simple" wheat allergy.  My daughter is allergic to wheat but does not have gluten intolerance or allergy.  You do not need to be consuming wheat for a scratch test or other IgE test, but there needs to have been previous exposure.


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#3 of 53 Old 03-29-2014, 12:34 PM - Thread Starter
 
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What about a test for sensitivity or intolerance? Is that only through stool testing? Do you have to be consuming gluten for that?
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#4 of 53 Old 03-30-2014, 05:41 AM - Thread Starter
 
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Also, is it true that you need a diagnosis from a doctor in order to keep your child gluten free at school? How can they tell you what your child will eat?
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#5 of 53 Old 03-30-2014, 06:02 AM
 
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I didnt need anything for the school for L....but I didnt ask their permission either..I told them what,why and That I would provide all her meals and snacks...I suppose if I expected them to provide her with the food as she does qualify for free lunches I would have to get a doctors note...

L tested negative for the blood test but teacted with scratch...Ped said the blood can be inconclusive and doesnt mean a thing...I declined further hearing because there was no way I was giving her gluten and making her Sicker just for them to get their positive..
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#6 of 53 Old 03-30-2014, 08:21 AM
 
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Blood testing for Celiac is pretty good. Blood and skin testing for allergies, not so good, about 50% of positives are false sometimes up to 90%.  Also, people aren't allergic to gluten. You can be allergic to wheat but have an autoimmune issue with gluten.

 

IF you want accommodations in school, you will need some kind of dx.  It goes far beyond them proving food. There can be issues in the lunchroom, art supplies, school parties, birthday treats that are sen in 20 times a week.  It is't just about the school providing food when there is a real issue.

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#7 of 53 Old 03-30-2014, 08:44 AM
 
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I provide everything for my L because they just dont get it...I keep a Box of treats in the room for birthdays and treats...she has her own Box of art supplies,baby wipes for desk cleaning,her own pump soap for the bathroom..We havent had too much for problems just because I supply everything...there is gluten in everything right down to glue and playdough..

Her school goes with it and is happy to let me provide...they have seen her have reactions and get sick..Not all Schools are so accomadating though greensad.gif

Hope you get it all taken care of so your child can have a fun safe school experience...
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#8 of 53 Old 03-30-2014, 12:11 PM
 
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My daughter and I have gluten intolerance. Our blood tests and biopsy were negative for coeliac but our symptoms are severe if we eat gluten. Yes you have to be eating gluten to have the tests so it means being sick for at least a month and then still not finding conclusive evidence . We take our own food everywhere. It's just easier.
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#9 of 53 Old 03-30-2014, 06:09 PM - Thread Starter
 
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I'm so confused about testing for gluten. Is the celiac blood test very accurate? Is the gluten intolerance stool test accurate? We really can't afford unnecessary bills right now, but I really believe that a test would help us and our family members take this more seriously.
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#10 of 53 Old 03-30-2014, 06:32 PM
 
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If the blood results for celiac are positive, I believe that is accurate (not referring to the genetic marker-- that is accurate but not an indication whether one has developed the condition or not).  Negative, you won't know.  I'm not sure how this rates for expensive tests (I believe it is fairly low, and my insurance covered it), but it is fairly simple and a good place to start.  I honestly don't know anything about testing for intolerances nor how accurate they are.  For my money, I would begin with a blood draw.  I did have that test, it was negative, and chose to not test further because there were not enough symptoms to convince me it was worth pursuing.  

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#11 of 53 Old 03-30-2014, 06:52 PM
 
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Celiac testing is pretty good. Intolerance testing isn't recommended at all.  A lot of smoke and mirrors.

 

Nothing you are describing makes me think anything having to do with gluten.  It sounds like a coincidence honestly.  If you really think there is an issue, it would be much cheaper and more likely accurate to keep a food log.  Until you see a trent you will be wasting time and money going through testing.

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#12 of 53 Old 03-30-2014, 08:10 PM
 
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Some of your symptoms could be gluten-related.  Celiac presents itself in many ways.  In kids, often the only sign is failure to thrive or even behavior issues.  My son was anemic - no other symptoms. Celiac is usually diagnosed via a blood test and then via biopsy.  If the blood test is positive, then it's usually pretty accurate.  

 

My son has celiac.  He goes to public school.  Although we do have a doctor's note, he has never needed it to get accommodations for either school or for summer camps.  We just explain that he has celiac and needs a strict gluten-free diet.  We also steer clear of places where the chances for cross-contamination are high.  Thus, he brings his lunch from home every day instead of counting on the cafeteria to provide a GF option.  

 

If you want to test your kids (and you) for celiac, you need to be eating gluten for about a month ahead of time.  And many celiac tests are not as accurate in very young children. As far as I know, there is no test for gluten intolerance other than removing gluten from your diet and having your symptoms go away.  If you think you might have celiac, the blood tests are relatively simple, and it's something you want to know about if you or your kids do have it.  But beyond that, a food log is probably the way to go.  

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#13 of 53 Old 03-31-2014, 08:19 AM - Thread Starter
 
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Is the celiac blood test ever wrong? Will it ever give a false negative or positive?
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#14 of 53 Old 03-31-2014, 08:58 AM
 
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It can give a false negative.  But, while "never say never", a positive result is considered definitive.  It would be enough for a diagnosis.

 

If you get a negative and feel like you don't agree (and you *really need* that "celiac" diagnosis), you can have the biopsy done, which will give you a definitive negative for celiac.  Just know that this is an invasive test, and children are often put under for the procedure.  


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#15 of 53 Old 03-31-2014, 09:23 AM
 
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They won't typically do a biopsy without positive blood work.  Also while some people do experience a "false negative", Celiac needs an event to be triggered.  So someone may have the gene and has an event that triggers them to have Celiac.  If I test negative NOW but have an even in 3 months that turns the gene on then I get tested in a year it doesn't mean the test was wrong necessarily.  

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#16 of 53 Old 03-31-2014, 09:35 AM
 
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Please correct me-- is there only one type of blood testing for celiac?  I don't believe my test was looking for a genetic marker.  I was told that if the test was negative and I still suspected celiac, I could get the biopsy (I didn't).  

 

You know more about this than I do.


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#17 of 53 Old 03-31-2014, 09:58 AM - Thread Starter
 
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I agree, I would never put him under for a biopsy. If the blood tests are pretty accurate, then it seems pretty simple. Do you think our family doctor would be able to run the test? I'm fine not feeding him gluten and doing our own trial, but if he does have celiacs I want to make sure that we're extra careful at home and out and that he never gets any gluten. Thanks so much for all your input, you ladies are amazing!
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#18 of 53 Old 03-31-2014, 10:09 AM
 
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Information on celaic, including blood testing for antibodies:

 

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

 

Quote:
 Blood tests

People with celiac disease have higher than normal levels of certain autoantibodies—proteins that react against the body's own cells or tissues—in their blood. To diagnose celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but celiac disease is still suspected, additional blood tests may be needed.

Before being tested, one should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.

Intestinal Biopsy

If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is performed to confirm the diagnosis. During the biopsy, the doctor removes tiny pieces of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the patient's mouth and stomach into the small intestine. The doctor then takes the samples using instruments passed through the endoscope.

 

And genetic testing as well as an outline of other tests:

 

http://digestive.niddk.nih.gov/ddiseases/pubs/celiactesting/

 

Quote:
 

Genetic Screening Tests

Most people with celiac disease have gene pairs that encode for at least one of the human leukocyte antigen (HLA) gene variants, or alleles, designated HLA-DQ2—found in 95 percent of people with the disease—and HLA-DQ8. However, these alleles are found in about 30 to 35 percent of Caucasians, and most people with the variants do not develop celiac disease.1Negative findings for HLA-DQ2 and HLA-DQ8 make current or future celiac disease very unlikely in patients for whom other tests, including biopsy, do not provide a clear diagnostic result. An increased risk of developing celiac disease has recently been described in individuals who carry a new HLA-G I allele in addition to HLA-DQ2.5

 So, there is more than one kind of blood testing.  Testing for "autoantibodies", a positive result is usually accurate, negative not so.  Testing for genetic markers, a positive does not indicate that one has the condition, and further testing is needed to verify.  Note, it says "most people...", which means that one can have the disease without the markers.

 

Alles klar?  Hope this is a mite bit helpful.  Unfortunately, it is not absolutely definitive without the biopsy.


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#19 of 53 Old 03-31-2014, 10:36 AM - Thread Starter
 
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A sidenote thought: by not giving gluten to my younger one, am I hurting him for the long run? If he doesn't get gluten now, will he be unable to digest it well when older? He's 20 months, btw. Basically, since eliminating and reintroducing for myself, I'm just not a big fan of gluten. I would prefer to not have it in the house but let my sons have it when we're at a restaurant or family or friends house. Like maybe 2-4 times a month. Is that hurting them by not letting them have it often?
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#20 of 53 Old 03-31-2014, 10:37 AM
 
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There are actually several blood test in a Celiac panel it's called.  I think an IgA, tTG and some others. There is also something called a DGP which is for more long term compliance.  THEN there is the genetic test.  Again that will only tell you if it's *possible* that you have/may acquire Celiac disease.  IF the panel is + they will usually suggest moving straight to the biopsy. I insisted on the genetic test for a variety of reasons. 

 

So if the blood work is + and the genetic markers are there and there is resolution of known issues ( I'm not talking about dark eye circles and stuff) then SOME Dr's will dx Celiac. Many will still push for the biopsy though as it's the old fashion "gold standard". 

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#21 of 53 Old 03-31-2014, 10:38 AM - Thread Starter
 
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And yes, sweet silver, thank you very much for the test info! I think even if he had a negative blood test, I would be able to rest my mind a bit while I try to figure things out myself through trial and error of diet.
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#22 of 53 Old 03-31-2014, 12:04 PM
 
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If he had celiac, he would never be able to digest gluten, and giving it to him would be very, very bad for his health.  

 

If he doesn't have celiac, but still cannot tolerate gluten, then I don't know.  I don't know if you can train the body, or prevent the body from ever tolerating it if you don't.  Not much is known about this kind of stuff.  IF it is causing him trouble by consuming it, I would not worry about what would happen in the long run.  IF he was having trouble, I would be more concerned with NOW.

 

IF he was intolerant and *didn't* have celiac, I would test--through food logs and challenges-- whether he had the same reactions when there was gluten contamination but no consumption of the foods containing gluten.  If he passes those challenges, life will be so much easier for your family.  And of course, you would be challenging the foods themselves.

 

With intolerances there is such a wide degree of "intolerance" as to not be able to give an answer for it.  Every person will be different, and growing children will have different tolerances than they will as adults.  Then, pregnancy and other hormonal changes can alter ones tolerances, either opening up more foods to them, or narrowing them down.  It is completely unpredictable.  

 

If he showed no signs that contamination was affecting him (but confirmed through challenges that he was not tolerating gluten) I would keep his *diet* free of gluten-containing foods but not worry too much about cross-contamination.  With my daughter's wheat allergy, I find the "gluten free" moniker a convenient way to know that there are no sneaky wheat ingredients in (high-or-low) processed foods, but she doesn't have celiac so almost without exception, cross contamination is not an issue.  She is OK with most shared fryers, for example, which is a huge no-no for those with celiac.

 

For intolerances, it helps once a person is old enough to monitor their own diet and be aware of their own physical feelings.  Parents are left to do a fair bit of guessing for their kids.  Be reassured that if you are not SEEING something (including moods and indications that something is happening internally), that if anything is happening on a more subtle level that he will probably be fine, and when he grows up he might pay more attention to the signs you don't see (fat tongue--not normal, I discovered when I was 40!)  


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#23 of 53 Old 03-31-2014, 01:01 PM
 
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Silver,  many people with wheat allergies can not tolerate a shared fryer either. You must be lucky in that there hasn't been enough cross contamination in one or that her level of tolerance is pretty high.  I wouldn't want someone who deals with a wheat allergy to try a shared fryer or anything without talking in depth to their allergist. I would much rather my Celiac kid get "glutened" than consume one of his allergies. The ramifications of being glutened aren't life threatening whereas an allergen would be. 

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#24 of 53 Old 03-31-2014, 07:32 PM
 
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You're right. 

 

Wheat is not a life-threatening allergy for dd.  It is severely *unpleasant* when she consumes it, becoming an uncontrollable, teary-eyed devil the day after.  But her *immediate* symptoms (about 2 minutes)--redness mostly, very light swelling around the inner lip-- have been mild enough that I don't want to eliminate one of the few things she can have when we are out and about.  I have never seen that reaction once while we've been out.  You're right that she must have a certain, if small, tolerance.

 

If I felt like it was an acute, emergent allergy, I wouldn't be eating out at all.  The number of sneaky ingredients out there and the levels of cross contamination are frightening if one has to look at it through this lens.  

 

I have had a couple of instances with dairy that indicate contamination-- twice at coffee stands, once in a box of chocolate that had no dairy listed as an ingredient, once with some deli-sliced smoked turkey (supposed to keep those two cutters separate!)  She gets hives in addition to swelling with dairy, plus a mildly swollen throat.  That sounds terrible, I know.  But I have seen her worst when she accidentally drank cow's milk from a sippy cup.  I'm not worried for her life.

 

So we have been "lucky" even when it becomes obvious that there is contamination.  I'm not worried.  Vigilant.  Not worried.  Her allergist has relaxed and has us becoming more relaxed as well.  Once she stopped adding so many big allergies (lordy was that a frightening and stressful time!) and was cleared for peanuts (tests indicated a mild allergy) we all relaxed a lot.  I've even stopped carrying the epi-pen for now.  That was a huge leap of faith.  She wants to challenge some more foods (we've been taking a break adding more) and I might get it back for that round.  On the list to trial is shellfish and tuna, pecans and almonds, all of which she either tested as being highly allergic, or I knew for a fact she was allergic before the test.  So, I want to have the 'pen back for that.  If she passes those, she will be left with just wheat and dairy.  Yay!


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#25 of 53 Old 03-31-2014, 07:53 PM
 
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Has your Dr explained to you that the test results nor past reactions are indicative of future reactions?  Is this a board certified allergist?  The information you are speaking of doesn't sound like anything I have heard but I'm not your childs Dr. so....

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#26 of 53 Old 04-01-2014, 06:10 AM - Thread Starter
 
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Out family doc is out of the office this week. I'm wondering if anyone knows if the celiac blood test is something a family doctor could do? I'll put my 6 year old back on gluten if so, he's only been off for about five days now. Would he have to be on for a whole other six weeks? Or did give days off not change much? I know people say the test isn't very accurate in young children, but would a six year old produce pretty accurate results?
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#27 of 53 Old 04-01-2014, 06:48 AM
 
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I still haven't seen this documentation about the inaccuracy in littles. I'm trying to figure out if they just mean there may not be enough damage for a positive so they consider that inaccurate or what.

 

Yes your family Dr. can order the test IF you can convince them there is a reason to. Again, your list looks like it could be many many things or nothing but a fluke.  I would get your child back on gluten NOW if you are seriously considering testing. 5 days isn't enough to reverse damage if it were Celiac disease. 

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#28 of 53 Old 04-01-2014, 07:32 AM - Thread Starter
 
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Thank you scsigrl. I agree it could all be coincidence, but something else is that his stools have always been on the softer side as then once his main bowel movement he always had little thin ones. I suppose that would lean towards loose stools. In the past five days he's had just one solid formed stool. He's always even borderline anemic which I thought was so weird for someone who eats really well. And his lymph nodes have been swollen in his neck for years without any reason from his bloodwork. I guess I'm hoping I've finally found the answer to all of our problems in one shot. Not that I'm wishing he has a disease or anything. But I do believe he has an intolerance to gluten, at the very least. Since all of this, I think we've found connections to gluten with my husband as well.
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#29 of 53 Old 04-02-2014, 08:41 AM
 
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My mom is a functional medicine doctor, family practice and ob, and she suggested that my son be tested for gluten sensitivity through Enterolab.  They have a website where you sign up and you can test yourself or anyone in your family with or without at doctor's prescription.  We did the mouth swab test and it came back with a gene for gluten sensitivity and a gene for celiacs.  I won't got into the details of what all of this meant for us but the nurse went over the results with us over the phone and answered all of my questions and concerns - they were super helpful.  I was really happy with the experience and that was 3 years ago.  Gluten sensitivities manifest in so many different ways and affect everyone differently - it's tricky - but for us after 30 days of being gluten free the difference in our health and wellness was unmistakeable. Good luck!

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#30 of 53 Old 04-02-2014, 09:11 AM - Thread Starter
 
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Oh would you please share your experience and symptoms? Hearing all different journeys really does help me learn. If greatly appreciate it!
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