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

What To Do? Not Celiacs?


mama2

Recommended Posts

mama2 Apprentice

I have celiacs. Runs in my Family. My DD just turned 3 has had many symptoms. Ped sent us to see a GI doc they ran the full pannel...they said came back negitive. However she had a elevated allergen count? Not sure what that means. Anway, was at the Doc with her today for her 3year check-up. DD is on a Gluten light diet because I find it easier to cook gluten-free for all of us (started that after the pannel was done). In the past 5weeks she has been doing great. Her doc thinks just keep her on the gluten light diet for now... if symptoms reappear then go gluten-free. Would like some advice... the only gluten she gets right now is at pre-school snack time. Do I stay gluten-light or go Gluten-free?


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

The celiac disease tests are extremely unreliable in kids under six, and yield many false negatives. If you have suspected celiac disease, she probably has it. In which case a gluten light diet will keep damaging her bowels until she gets really sick at some point. It would be much better if you just put her on a 100% gluten-free diet, in order to avoid that from happening. You might be surprised how much better she will be when being completely gluten-free, in comparison the being gluten light.

mama2 Apprentice
The celiac disease tests are extremely unreliable in kids under six, and yield many false negatives. If you have suspected celiac disease, she probably has it. In which case a gluten light diet will keep damaging her bowels until she gets really sick at some point. It would be much better if you just put her on a 100% gluten-free diet, in order to avoid that from happening. You might be surprised how much better she will be when being completely gluten-free, in comparison the being gluten light.

I thought they were inreliable. Had no idea that they were until age six. Is there a such thing as Gluten senceitive?

jen2be2 Explorer

I just had a gluten-free whose child had a -blood work result but a + biopsy. I think they say that 20% of people who have celiac disease do not have + bloodwork results.

I would look into genetic testing to see if she is a carrier. If so, then if I wanted a for sure answer, then I would consider a gluten challenge with biopsy even if the blood results are -.

mama2 Apprentice

I just wanted to add my DH also has celiacs in his family too. So my DD has it on both sides.

Ursa Major Collaborator
I just wanted to add my DH also has celiacs in his family too. So my DD has it on both sides.

There you go, even more confirmation that she probably has it! And yes, there is such a thing as non-celiac gluten sensitivity. The symptoms are just as bad, the treatment is the same, but test results (other than with Enterolab) will always be negative.

happygirl Collaborator
There you go, even more confirmation that she probably has it! And yes, there is such a thing as non-celiac gluten sensitivity. The symptoms are just as bad, the treatment is the same, but test results (other than with Enterolab) will always be negative.

Actually, the antigliadin IgA or IgG can indicate gluten sensitivity (delayed allergy, intolerance). IgG food allergy/intolerance testing is done by many companies, not just enterolab, and can be done via bloodwork also, and for multiple foods.


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



Celiac.com Sponsor (A8-M):



mama2 Apprentice
Actually, the antigliadin IgA or IgG can indicate gluten sensitivity (delayed allergy, intolerance). IgG food allergy/intolerance testing is done by many companies, not just enterolab, and can be done via bloodwork also, and for multiple foods.

See she also had the food allery test done and did not show any allergies but it did show she had a high allergen level/ count?

Ursa Major Collaborator

Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.

mama2 Apprentice
Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.

Thank you, my DH and I are STRONGLY thinking about 100% gluten-free for our DD. I am also going to have my DH tested for celiacs since he has a family history too.

happygirl Collaborator
Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.

non celiac gluten intolerance (like any food) is often referred to as a "delayed allergy" ... it is not a classic allergy (IgE mediated), but the intolerance. Mainstream labs test for IgG/delayed allergy/food intolerance testing, including Quest labs.

An intolerance will not show up in traditional IgE allergy testing. It can show up in IgG delayed food allergy testing.

Open Original Shared Link

"Delayed Food Allergies/Sensitivities

This type of allergy, often called 'food sensitivities', does not involve IgE antibodies and the release of histamine which cause very obvious symptoms soon after the ingestion of a food. Instead they are the result of IgG antibodies becoming sensitized to certain foods. IgG antibodies don't cause the release of histamine but they do release other immune chemicals designed to inactivate or destroy invaders in the body. These chemicals can cause damage and resulting inflammation to your own body tissues in the process. As a result, they too can cause symptoms, especially if you develop sensitivities to a number of different foods. Symptoms from food sensitivities may appear up to 3 days after the offending food was ingested and last for weeks afterwards. Symptoms are wide ranging and can affect multiple body systems."

mama2 Apprentice
non celiac gluten intolerance (like any food) is often referred to as a "delayed allergy" ... it is not a classic allergy (IgE mediated), but the intolerance. Mainstream labs test for IgG/delayed allergy/food intolerance testing, including Quest labs.

An intolerance will not show up in traditional IgE allergy testing. It can show up in IgG delayed food allergy testing.

Open Original Shared Link

"Delayed Food Allergies/Sensitivities

This type of allergy, often called 'food sensitivities', does not involve IgE antibodies and the release of histamine which cause very obvious symptoms soon after the ingestion of a food. Instead they are the result of IgG antibodies becoming sensitized to certain foods. IgG antibodies don't cause the release of histamine but they do release other immune chemicals designed to inactivate or destroy invaders in the body. These chemicals can cause damage and resulting inflammation to your own body tissues in the process. As a result, they too can cause symptoms, especially if you develop sensitivities to a number of different foods. Symptoms from food sensitivities may appear up to 3 days after the offending food was ingested and last for weeks afterwards. Symptoms are wide ranging and can affect multiple body systems."

Very interesting website ... learning a lot. My DD has bloating, cramps, D along with contipation (sooooooooo many pooping issues), skin rashes (they NEVER know what causes it, all these come and go... have a hard time pinpointing foods. BUT I can say this since I have been cooking gluten-free she is sooooo much better. So IgG delayed testing is what I should ask to be done?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • 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.
×
×
  • 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.