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

Help Needed In Making Sense Of Allergies/sensitivities Test


sfamor

Recommended Posts

sfamor Rookie

Hello- I'm going to give a good amount of background info to my situation so thank you in advance for bearing with me for a long post!

I was diagnosed celiac (biopsy & blood test) exactly two years ago and have been gluten free ever since. Some symptoms like brain fog, severe acid reflux, and extended stomach/bloating went away within several months, but I continued to feel sick all the time- tired, backaches, stomach cramps and pain, bad gas, etc. About a year and a half ago I started having terrible nausea after eating and began actually throw up, particularly after dinner. Prior to this happening I feel extremely full as if food isn't moving through my stomach (even if I've only had a small meal) and it is extremely uncomfortable/painful. The vomiting, although unpleasant, relieves the uncomfortable fullness. My gastroenterologist told me that I have "cyclical vomiting" and that "some people just throw up often and we don't know why." To me, this answer was totally frustrating and unacceptable and I ended up trying to seek some answers on my own.

I have long suspected other food allergies/sensitivities and I had actually had skin prick testing done about a year ago at a regular allergist paid for by my insurance. It didn't show any positives except for what I presume to be a false positive to squash (I rarely eat it, but when I do I've never had had any issues). I took the lack of positive results at face value and put the allergy idea to rest. However, I have been working with a local naturopath for about two months now and she had me tested for allergies and sensitivities through a company called USBiotek. I still don't totally understand how the test works (it is a blood test using the ELISA measure) and maybe someone on here can help me understand, but it says that it tests for three antibody types- IgA, IgE, and IgG. My understanding is that an IgE reaction is what is usually considered a "true" allergic response in which you'd see symptoms immediately or within a couple hours after consuming and IgA and IgG are "sensitivities" with symptoms showing up within 72 hours. Please correct me if I have this wrong because I still am not sure I totally understand.

To the point...so my panel came back showing IgE reactions that fell in the "mid moderate to high" range to cows milk, including whey (but not casein or oddly mozzarella cheese and yogurt), beef, and lamb. I also had IgG and IgE responses in the high to extremely high range for Casein, mozzarella cheese, goats milk, yogurt, and egg. In fact the IgG reaction to egg was as high as the test gets. A lot of this makes sense to me. Milk and eggs were two foods that I had a feeling might be making me sick (and unfortunately for me foods that I consume a lot!). My ultimate question is what does it mean that this ELISA test showed that I had true IgE allergies to milk and beef whereas the skin prick test (that seems to be the standard among mainstream western allergists) showed no reactions and I had been deemed free of food allergens? I'd be really grateful some assistance in making sense of all this! I know that my allergist's office does do blood tests, in addition to the skin prick tests- should I make another appointment and see if they'll do their own blood test for the dairy and beef to see if I can duplicate the results??


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



Celiac.com Sponsor (A8-M):



Juliebove Rising Star

Were you tested for gastroparesis? I have it. It makes me feel full and it sometimes makes me throw up. The food that I throw up is mostly undigested. If you have that, you need to find a new gastroenterologist.

Perhaps you need to stick to easy to digest foods for awhile? Things like white rice, chicken breast and applesauce. You might also do well with a liquid diet. I can't really do that because of diabetes. But juices and broths go down easily.

sfamor Rookie

Were you tested for gastroparesis? I have it. It makes me feel full and it sometimes makes me throw up. The food that I throw up is mostly undigested. If you have that, you need to find a new gastroenterologist.

Perhaps you need to stick to easy to digest foods for awhile? Things like white rice, chicken breast and applesauce. You might also do well with a liquid diet. I can't really do that because of diabetes. But juices and broths go down easily.

I really thought that it might be gasroparesis too (as much of the food I throw up is undigested or only partially digested), but when I did a gastric emptying study they actually found that the food moved through my stomach too quickly instead of too slowly. And, of course, they could give me no explanation for that and just told me it wasn't an issue (thanks but throwing up daily is kind of an issue for me!). The thing that interests me now in light of getting the results about the strong sensitivity to eggs, is that they have you eat eggs (with something radioactive on them) to do the gastric emptying test. Maybe that impacted it somehow?? I think I will follow your advice though and try another gastroenterologist to get a second opinion.

StephanieL Enthusiast

IgE is though of as a "true" allergy. These are the ones that can and often do lead to anaphylactic reactions.

IgG are usually GI mediated responses or sensitivities.

Basically, if you aren't reacting with things like hives, breathing problems, facial/lip swelling and the like, blood or skin prick test (SPT) aren't going to show positives. Negatives on SPT and the associated blood testing is only 50% accurate for positives (90%+ for a negative). I wouldn't go for blood work based on what you are describing (but that's me :) ). The testing your NP does would be more in line with sensitivities/intolerances.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.