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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? - 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

Gastro Punted To The Allergist... Better Or Worse?
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Just curious if anyone has experienced better effort from an allergist/immunologist than the gastro?

 

We have been working with the gastro since Sept to identify what my 2yr olds problems are, or the source of her chronic 'functional diarrhea.'

 

Her IgA was negative, so the gastro is standing firm on not celiac.

 

I pushed for a RAST allergy testing and now that we identified a soy and peanut allergy, we've moved to an allergist.  She's still under the care of the gastro due to her reflux and bowel issues, but she has become dismissive now that a confirmed food allergy has been found.  We are set to schedule the endoscope after June if the problems continue.

 

We've eliminated soy, but its only been a couple weeks so its too early for any dramatic improvement.  I believe there is something else as the cause of her chronic issues, so we will likely continue more allergy testing, and I plan to push for the IgG test since the gastro refused.

 

Basically, did anyone actually get diagnosed from an immunologist rather than a gastro?

 

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My son (2) was diagnosed with toddler diarrhea as his blood panel was low for celiac and all tests were negative for allergies. I pulled him off of dairy and gluten and his stools were formed within ten days. Sorry, not really answering your question, just letting you know that his stools became normal pretty quick after removing his offending foods. They had been loose since 9 months of age.

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Just curious if anyone has experienced better effort from an allergist/immunologist than the gastro?

 

We have been working with the gastro since Sept to identify what my 2yr olds problems are, or the source of her chronic 'functional diarrhea.'

 

Her IgA was negative, so the gastro is standing firm on not celiac.

 

I pushed for a RAST allergy testing and now that we identified a soy and peanut allergy, we've moved to an allergist.  She's still under the care of the gastro due to her reflux and bowel issues, but she has become dismissive now that a confirmed food allergy has been found.  We are set to schedule the endoscope after June if the problems continue.

 

We've eliminated soy, but its only been a couple weeks so its too early for any dramatic improvement.  I believe there is something else as the cause of her chronic issues, so we will likely continue more allergy testing, and I plan to push for the IgG test since the gastro refused.

 

Basically, did anyone actually get diagnosed from an immunologist rather than a gastro?

 

Just have a minute -- but if gastro refused BASIC celiac antibody testing -- yes, you should request from Allergy - although celiac antibody testing is not within their normal tests.

 

Any chance your primary can order proper celiac antibody testing?

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Our allergist said that she wished our daughter had been sent to her first, she would have diagnosed celiac on the spot with the rash (she said by looking at it it was very likely DH), her symptoms and her positive genetics, and given that pretty much all her health issues disappeared gluten free including anaphylactic allergies.

Celiac is an autoimmune condition, so if she is an allergist/ immunologist she is well within her rights to order a celiac panel, ours did

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My alllergist literally saved my life. I show false negative on the older tests. I did have to look a bit to find one who would deal with intolerances as well as true allergies so make sure you ask if they will before you make the appointment as many won't. A good allergist will do true allergy testing and then give you a starting point for a true elimination diet for her. It won't be easy but you child has suffered long enough. Sometimes the best test for celiac is elimination of gluten and the reaciton that comes from adding it back in.

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I had been to 2 GI docs, 2 primary docs and my endocrinologist for answers about my recurring nausea, dizziness and acid reflux. I was told by all of them after countless tests that nothing was wrong with me.

 

then I went to an allergy doctor who reviewed my records and did allergy and blood testing on me. she diagnosed Celiac and in addition, found out I am allergic to dairy and soy.

 

I feel she saved my life as well, she REALLY listened to me.

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Thank you everyone, your responses have given me a glimmer of hope for an answer, ANY answer!

 

Now just to wait for that first appointment with the allergist (April 24th)

 

I have to admit that I've been less than impressed with the gastro.  The office is run poorly and her personality is rather mellow and calming which of course seems dismissive and passive aggressive to me (which is likely just my interpretation.)

 

She's not budging on the celiac issue and does not want to pursue anymore celiac specific testing.  Granted I'm open to any answers, not just celiac!  My daughter is steadily and consistently in the 90% for height and weight and is "obviously a healthy child despite her bowels and reflux."  That irks me, so because she isn't wasting away she is supposed to continue to have a rock hard belly, unexplained excessive gas, and chronic diarrhea?? 

 

Maybe I'm just overly sensitive to it, but she may not know that she's hurting.  She's been like this since birth.

I grew up with so many stomach complaints and bathroom issues that it interfered with school and forced me out of certain events....all because my parents and doctors just said 'she has a nervous stomach.'

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Okay, now I see it is the gastro that is blocking any further celiac testing.  And, as I recall, the pediatrician won't do an end run around the gastro.  I don't blame you for having second thoughts about her.  I seem to remember that your daughter was referred to her for a scope in the first place. :blink:

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We were told our daughter just had toddler diarrhea, turns out she was realllllly backed up the diarrhea was just leakage. But it was the same kind of response, she's growing she doesn't look like a starving child, so she's fine.

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Yes, the primary reason we were  referred to the gastro was for her reflux and food texture aversion.

Prior to initiating feeding therapy, we wanted to confirm what she could actually eat and to  scope and see if her esophagus was damaged to the point of her food aversions that she had at the time.

The gastro started with nutrient testing and the above tests prior to scoping.  I was grateful at the time she wanted some numbers to start with, but now she seems that we aren't an 'ideal patient' for her interests?

 

Got the negative on the one celiac test and she wasn't going to schedule a followup or anything.

I pushed for the followup to recheck her nutrient levels and I pushed for a basic RAST test to get any sort of answer.

The only reason the gastro wants a followup this time is because of her VitD continuing to decline despite the supplements. 

I'm holding her to it about the scope come May 10th appt.

When we got the class3 response to soy and class1 response to peanut, the gastro simply said to call the ped for followup.

 

Called the ped and they immediately routed us to the allergist/immunologist (have I said how much I love the ped, despite the dr politics?)

 

Now we wait.

April 24 -- first allergist/immunologist consult

May 10 -- gastro followup, potential scope scheduling.

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