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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.