Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gastro Punted To The Allergist... Better Or Worse?
0

10 posts in this topic

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?

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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?

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.'

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,608
    • Total Posts
      918,335
  • Topics

  • Posts

    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined