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

Gluten Challenge


bendano

Recommended Posts

bendano Rookie

I haven't gotten any replies to my previous post. I guess I am not the only one that is confused over my daughter's case. The one thing I have noticed is that when she is off gluten then put back on (we have done it twice) she gets very sick with vomiting, fever and worse diarrhea. That last 3-4 days then kind of stabilizes. Is this a common thing seen in celiac disease? I thought I was crazy and that she may have had a poorly timed stomach virus. Also if she does get gluten when she is on a gluten-free diet she seems to react worse than when she is consuming it daily. I had suspected a problem with the french fries in nugget oil. She always gets sick if we do fast food french fries. Thanks. Laura


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

I just read your 1st post and what you've described seems normal and not surprizing for someone with celiac disease. I haven't been through testing but from everything I've read, it sounds like your daughter's biopsy clearly points to celiac disease. The fact that the blood test was negative doesn't have too much weight, especially in light of the biopsy and her response to the diet. When you're in constant pain daily you kind of get used to it. You know your still in pain but when the pain starts to go away you feel great relief even if it doesn't go away completely then you start to realize you're still in pain again. But if the pain returns(gluten is re-introduced) then the pain is more of a shock to the system and may feel worse.

I''m not great with analogies or explanations. Maybe this analogy with pain sounds a little harsh and is not necessarily a scientific explanation of how gluten affects the body but it's how I feel. Hope it helps.

Fast food fries are not safe unless made in a fryer that "dedicated"-that means gluten is never introduced into it.

From what you've said, she need to be on a gluten-free diet.

If for some reason I've missed something and this doesn't address what you're thinking please ask more.

As a mom of a kiddo that has problems I'm trying to figure out, I'll say that sometimes it''s easier to figure out what's going on with us. It's harder sometimes to wrap our minds around what's going on in our kids, especially because they're not able to communicate some things to us. I feel like I can't see the trees through the forest. With myself I'm more sure and logical but with him I doubt, question and second-guess everything.

Take care

taweavmo3 Enthusiast

If your daughter's biopsy showed villi blunting.....she needs to be gluten free, period. That is your diagnosis, regardless of a negative blood test.

And her reactions do not seem strange at all, they actual seem pretty typical for Celiac to me. With my daughter's gluten accidents.....it's always worse if she hasn't had an accident in months. But one time we had two accidents happen within days of each other, and the second glutening, she didn't show any reaction at all. Once the gluten is in her system, it doesn't cause such a violent reaction if she ingests more. Does that make sense????

And ditto about the fast food fries....unless you are certain there is a dedicated fryer, they are not safe. And even then, it's risky, as the risk of cross contamination is still very high. We tend to stay away from all fast food fries now, but occasionally we'll do Chick Fil a fries and a fruit cup.

If you have any questions about food (I have four kids who are gluten and dairy free), this is a great board. You might also read a few Dana Korn books regarding kids with celiac disease...that's where I started, and it really helped get my head around everything. Good luck!

kbtoyssni Contributor

I imagine that if she gets glutened her intestines and immune system go on overdrive. If she keeps eating gluten after that the intestines and immune system are already irritated so they're not going to react much more. She'll probably stabilize into a general state of unwellness but will no longer have that huge initial reaction.

hathor Contributor

I think of it this way. One's body can build up a tolerance to something. More is required to see an effect from that substance. Then the substance is avoided for a period of time. The tolerance is gone and the body reacts strongly to a small amount.

bendano Rookie

thanks for the info. I am continuing the gluten-free diet and learning the best I can about this disease.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    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.