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
T.H.
Posted

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
StephanieL
Posted
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
Hailiesmom08
Posted
  • Author

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
StephanieL
Posted

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
Hailiesmom08
Posted
  • Author

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
StephanieL
Posted

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
Hailiesmom08
Posted
  • Author

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    2. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    3. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
    4. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Some backup to my statement about gluten and milk. Some background. When my son was born in 1976 he was colicky from the beginning. When he transitioned to formula it got really bad. That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease...
    5. trents
      - trents replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,386
    • Most Online (within 30 mins)
      7,748
    TByrd
    Newest Member
    TByrd
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      Shingles - Could It Be Related to Gluten/ Celiac

      By trents · Posted

      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
×
×
  • 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.