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      Frequently Asked Questions About Celiac Disease   09/30/2015

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wmramsel

Gi And Allergist Appointments- Suggestions?

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We have an allergist appointment on June 3 and a GI appointment on June 11 for my daughter.

 

What are your suggestions?  Things you wish you would have asked, things to make sure to ask, things to look out for...etc.  I don't want to miss anything! 

 

TIA!

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after my diagnosis I still had stomach issues, although thankfully at a much lower level, so I went to an allergist. I had some idea of what was bothering me, so she did food testing for that plus other common problem foods. she found a dairy and soy allergy, so I cut those out right away.

 

do you have an idea of what foods may be problematic for your daughter?

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My daughter was also referred to an allergist and a GI doctor at the same time (as an infant), and my advice is to make sure the two doctors don't both push off the responsibility for figuring out what's wrong to the other!

 

We had an excellent allergist who clearly recognized that my daughter had a food-related problem, and she was the only one of all the specialists we saw who really listened to the whole story and tried to help us. However, my daughter repeatedly tested negative for food allergies, so it was really the GI doctor's expertise that we ended up needing - but he wasn't as responsive, and once he knew we were seeing the allergist he stopped actively investigating what could be wrong. In retrospect, I wish I'd pushed him much harder to run his own tests, instead of waiting until we'd exhausted the allergy route. (Three years later, we're back where we started and are now trying to get a referral to see the pediatric gastroenterologist again.)

 

Good luck! 

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Thank you!  I apologize for the double posting of this thread, I'm not sure what happened.

 

Gluten is definitely the #1 problem.  It is a matter of whether it is Celiac or an allergic reaction.  She is off of gluten, so it is going to be a diagnosis by elimination of other things.  Both the GI and the allergist come highly recommended, so that gives me hope.  Also, the GI actually has celiac disease himself- I find that comforting that we have a better chance of him knowing a lot about the disease.  The website says her specialized in Celiac.  I never thought of the doctors trying to push the responsibility off on the other- I definitely wouldn't have caught that right away.  She eats a LOT of dairy, so I'm really hoping that isn't contributing to her symptoms as she would be very upset if we had to cut out dairy.  

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Why are you seeing an allergist?  I do not suggest going to one unless you see an issue leading you to believe that there's a problem. If you are seeing issues, ONLY test for those foods you think there is an issue with. Allergy testing is notoriously inaccurate. The "standard" test has a 50% false positive rate.  If you test for a ton of things you very well may be told there is an allergy when there isn't and unnecessarily limiting her diet when there is no reason to.

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There is also a flip side with an allergist - false negatives, our daughter milk allergy never showed up on the skin prick test, but one drop sent her into anaphylactic shock

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There is also a flip side with an allergist - false negatives, our daughter milk allergy never showed up on the skin prick test, but one drop sent her into anaphylactic shock

 

 

They do happen, sure but at a rate of about 5-7% vs. false positives.

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Our allergist stands by food challenges of suspected foods and IgE blood tests of suspected foods, as your skin is not you guts so you cannot always expect your skin to react the same way as if the food is consumed, I'd keep a note of any foods you think are bothering her and talk to the allergist about IgE testing

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Our allergist stands by food challenges of suspected foods and IgE blood tests of suspected foods, as your skin is not you guts so you cannot always expect your skin to react the same way as if the food is consumed, I'd keep a note of any foods you think are bothering her and talk to the allergist about IgE testing

 

That's great that the Dr. adheres to the current recommendation on diagnosis!  So many don't.  That said, skin testing and blood testing for IgE allergies have the same accuracy (or should I say inaccuracy ;) ) as each other. 

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I wonder if persons who react but no + skin tests; are chimeras?

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Some people get no + skin reaction as an allergy is caused by blood cells, your skin is not your blood, well that's how our allergist explained it

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Some people get no + skin reaction as an allergy is caused by blood cells, your skin is not your blood, well that's how our allergist explained it

 

SPT (skin prick test) and blood tests for IgE allergies have about the same degree of accuracy. Some people have "truer" results with skin over blood or vice versa.

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To try to answer all of the above:  It is definitely a gluten issue, but we don't know if it is celiac or an allergy.  StephanieL has mentioned from my previous posts that it sounds more like an allergy.  We tried gluten trial and ended up in the ER- so no gluten challenge, no celiac blood tests.

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That's great that the Dr. adheres to the current recommendation on diagnosis!  So many don't.  That said, skin testing and blood testing for IgE allergies have the same accuracy (or should I say inaccuracy ;) ) as each other. 

 

 

That's great that the Dr. adheres to the current recommendation on diagnosis!  So many don't.  That said, skin testing and blood testing for IgE allergies have the same accuracy (or should I say inaccuracy ;) ) as each other. 

 

 

She definitely has skin reactions to gluten-would this make a skin test more accurate?  I have yet to delve into the allergy world.  I'm so overwhelmed with all this- it is intimidating.  

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If she has a skin prick test the allergist will measure the size of the hive, it is supposed to indicte how severe the allergens, then they will do an IgE blood test to determine if it is an IgE true allergy. There is no skin prick test for gluten, but I would make sure they do barley wheat rye and oats

Skin testing and blood testing gives a more accurate picturebf how severe the allergy is usually , our daughters indicated a mild allergy, but it wasn't. I would ask for an epi pen as allergies get worse with repeated exposure.

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If she has a skin prick test the allergist will measure the size of the hive, it is supposed to indicte how severe the allergens, then they will do an IgE blood test to determine if it is an IgE true allergy. There is no skin prick test for gluten, but I would make sure they do barley wheat rye and oats

Skin testing and blood testing gives a more accurate picturebf how severe the allergy is usually , our daughters indicated a mild allergy, but it wasn't. I would ask for an epi pen as allergies get worse with repeated exposure.

 

 

Thank you- I'll make sure they do all 4.  I am pretty sure we accidentally glutened her over the weekend- my mom wasn't thinking and put her in the same highchair that her brother was just eating cheerios in.  :(  Her rash started getting worse again.

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, it is supposed to indicte how severe the allergens

Skin testing and blood testing gives a more accurate picturebf how severe the allergy is usually

  This is not true at all.  The size of the hive nor the "class" of blood work have any indication on how minor or server an allergy will be. It only shows that your body has been sensitized to that thing and even that is a false positive 50% of the time.

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They do measure to get some kind of idea, I k ow it isn't always an indicator but they do measure.

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