Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sorely Disappointed With Gi Appt. Today


Hailiesmom08

Recommended Posts

T.H. Community Regular

Re: the dairy and allergy testing - very glad you are going to see the allergist. A good friend has a family history of allergies, and for any of the foods that her children reacted to with any sort of throat swelling/pain or hives, the docs always recommended that she 'try' the food again only in the office with an allergist, for safety reasons.

Have you mentioned her new reaction to the doctors that previously suggested that you try her on dairy ever 6 months? The new reaction would likely involve a change of advice, honestly.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast
soon and she swollowed it she started crying saying it hurts and pointed to her throat. Minutes later she wasn't talking and couldn't even swallow her saliva so she would run to the sink every 10 min to spit it out. Her doc had told us to try dairy every 6 months with her to see if she could tolerate it.

Was it your ped who said to try dairy every 6 months? Cause what you are describing sounds like it's headed to an anaphylactic reaction and I would get to an allergist and get some dpi pens. And NOT try it every 6 months. That sounds down right dangerous to me.

Hailiesmom08 Rookie

T.H- I did call her doctors office to inform them of her reaction and they said they would note it. I called today because my daughter seemed to have a stomach irritation after eating a banana, the lady answering the phones and the doctor don't seem to be on the same page because she said the doctor ran allergy tests but that he suggests I should see an allergist. When I spoke to her doctor when he read lab results back he said he ran IGA testing not IGE which from what I read they have to run IGE for allergies. Now I am beyond frustrated we just want to know what all is hurting our little girl.

Stephanie- It was our daughters pedi that advised us to try dairy every 6 months due to him thinking it was a dairy intolerance not an allergy.

He has always been such a great doc as of late i'm starting to wonder but at the moment I just can't seem to trust anyone.

StephanieL Enthusiast

Stephanie- It was our daughters pedi that advised us to try dairy every 6 months due to him thinking it was a dairy intolerance not an allergy.

He has always been such a great doc as of late i'm starting to wonder but at the moment I just can't seem to trust anyone.

As an allergy Mom as well as Celiac, I strongly suggest getting to an allergist. You need IgE testing with that reaction which is sounds like wasn't done? (I can't see your post to double check that but I think that's what I read). IgE testing is for allergies that are more likely to be anaphylactic. The other Ig's are more intolerances and the like.

FWIW, we've been through 5 allergists. It was a heck of a time finding one who knew what was up. Our last ped was an allergist as well and he had less of a clue than the others! I would suggest checking over on the kids with food allergies forum if you want recommendations for a good allergy Doc (if you choose to go that way).

Hailiesmom08 Rookie

Stephanie- No unfortunately IGE testing wasn't done just IGA. We have an appt with an allergist on Wed. I hope it goes well I'm teally starting to bw fearful of what to feed my daughter. I gavr her a banana Thursday, not only did it cause stomach irritation she broke out in a yeast infection from it. I thought to help with the inflammation let's give her a childrens motrin. Within 5 min. She broke out in a rash on her inner thighs and said it stung and itched bad.

Sorry to hear you have had such trouble finding a good doctor :/

StephanieL Enthusiast

I wonder if it's corn causing some of the issue. That could explain the Mortin. Also, we can't do bananas so I feel ya there. DS has a condition called FPIES that can/does (for him) cause him to go into shock from them.

I really hope you can get things figured out. It is tough to get through but know once you "get it" it'll be like night and day for her!

Hailiesmom08 Rookie

Oh goodness that must be so scary.

Thank you Stephanie for the advice/support this is soo hard and heartbteaking.

We want to do an elimination diet but with her only being 3 and a picky eater as is I just don't know how to go about it. Once she gets sick of eating the same bland foods she then just stops eating all together. I really can't wait to be in the


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,138
    • Most Online (within 30 mins)
      7,748

    Monaouz
    Newest Member
    Monaouz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.