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

New With Wheat Allergy

JDB

Recommended Posts

JDB Newbie
JDB
Posted

We're currently in a food challenge for the next 2 weeks to prove our sons delayed WHEAT reaction (he is also allergic to SOY). 2 Dr's looked at our 2 1/2 year olds skin patch test, and they both agreed he was positive for a wheat allergy (they don't see if often), but they are making us challange it> annoying!

Anyway,sadly our story is so much like other children these days:

"colickey" baby

no sleep

diahrea/ muscus

rash everyere

excema

GERD, acid reflux

underweight and falling off charts

After 2 years of medication we had enough. Our son was having side effects from them. I kept PUSHING for a real diagnosis. After 2 ped GI's we finally got a "unknown food allergy" diagnosis. Although our spunky 2 year old boy did not test positive for celiac's (boy I was convinced) FINALLY he tested postive allergic to wheat.

We've been a diary free-soy free, and lately organic family working VERY hard at this food thing. Everything made him sick. He eathier vomited our didn't eat. Nights were horendous, downright awful.

After switching to organic it was like a different child. I though that was the answer! I still like it, but his improvemnt is because I cut out flour and sugar for a time (worred about fructose intolerance as well), then we thought it was corn. Now 4 days into gluten free we hope we are on our way to healing our poor son. I HOPE

We will need help with food. Fortuntely I love to cook (maybe not this much), and can do it. Personally I am gluten free for a few weeks just on my own, AND I HAVE NEVER FELT BETTER!!!!! This is how normal people feel?? I was so tired of the bloat and gas my whole life. What a drag. I am inspired to go raw vega, but I have alittle bit much to deal with right now :)

I hope to share stories with you all. I hope everything is going well for you children with celiac. OH coincidentally (and rather amazing I might add) a week before we got our wheat allergy dx, I met a mom in the park with 10 children and many of hers have celiac! I had the urge to get her number, and thankfully I saved it! She's been gluten free for 8 years, and if she can do it I can :) I do have 3 kids 4 and under, but not 10 :) Sadly they almost lost their first child to malnutrition because of it. All's well that ends well :)

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

Celiac.com Sponsor (A8-M):


T.H. Community Regular
T.H.
Posted

good luck to you!

We had a similar improvement on going organic, too. We're gluten free as well, which showed improvement, but organic made a big different too, it's amazing, isn't it?

Oh, and you might want to check out the most recent research into gluten free grains - they were saying that any non-gluten grains and flours can automatically label themselves as 'gluten free' in the States, but that a recent study was finding high levels of gluten/wheat contamination of these grains and flours. If your little one is very sensitive, I figure that could be a problem!

My kids keep having these reactions periodically that I can't figure out, and after hearing that, I'm wondering if some of our gluten-free flours are not so gluten-free. I'm ordering some of the home tests for gluten to start testing for these - very frustrating.

But I hope this goes well for you and you find the answers you've been looking for to help your little ones stay healthy!

JDB Newbie
JDB
Posted
  • Author

hmmmm, organic helping...why do you think that was?

tonight our son is very gassy (TMI< but not in this world!)

the gluten free stuff is often not organic, so that is frustrating, very.

Juliebove Rising Star
Juliebove
Posted

Welcome to the forum! My daughter is allergic to wheat as well as some other things. Sometimes I will cook extra of something to eat later. I don't do this often as we don't really like leftovers but she takes a lot of dance. Right now she is in summer dance camps as well as classes...sometimes for as many as 8 hours a day. So I have to have something to make for her dinner.

The other night I did chicken teriyaki. She prefers the legs but I did a few breasts as well because they are not as messy to eat at the dance studio. I used a soy free soy sauce that is coconut based to make the teriyaki sauce. I also cooked up extra rice and put it in an individual container for her. The rest is in the freezer for meals on other nights.

I also made several individual meat and vegetable loaves and they are in the freezer as well.

I like to do potatoes in the crockpot. I have a very large one so I can make a lot. Pricked and wrapped in foil, they make good baked potatoes. Cook for about 8 hours. We like them stuffed with nutritional yeast, green onions, olive oil and rice milk...sort of mashed then stuffed back in the shells and put in the oven until heated through. Or I will cut them in chunks and add some onion chunks for flavor. Also salt and pepper and maybe some parsley and a small amount of olive oil. This will make enough for two meals to eat with meat of some kind and there will usually be a little bit left to add to make a quick vegetable soup.

We are lucky in that there is a health food store near where we live. The owner has celiac. So while she already stocks a lot of stuff that is organic and gluten-free, she is always on the lookout for new products and will also place special orders for us when she can.

Skylark Collaborator
Skylark
Posted

hmmmm, organic helping...why do you think that was?

tonight our son is very gassy (TMI< but not in this world!)

the gluten free stuff is often not organic, so that is frustrating, very.

In the US, organic food is supposed to be non-GMO. There are quite a few studies showing that some of the genetically modified grains are more allergenic than natural ones. I don't know if that's the issue but it comes to mind.

macocha Contributor
macocha
Posted

My friend is trying a new recipe where you use circle cutters and make hot pocket type treats... will post it once she tries the recipe to see how it goes. I am anxious to try these.

my son is allergic to wheat as well as being celiac.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,912
    • 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
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @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
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      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
      My only proof

      By Scott Adams · Posted

      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
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      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.