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-free Now 3 Weeks, Symptoms Worse! Help

webbydu

By webbydu
in Coping with Celiac Disease

Recommended Posts

webbydu Rookie
webbydu
Posted

Hi:

My 12 yr old daughter has been gluten-free for 3 weeks now and her symptoms are worse. When she eats she can end up with bad stomach pain , also her stiffness, joint and bone pain are worse. Help ... what is happening. She is going crazy with all these problems that are worse. Also, she really complains about pain with any vibrations. Going in the car is a mission for her. Does anyone know what is going on? What could be going on?

Help

thanks

Liz

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

Celiac.com Sponsor (A8-M):


Mother of Jibril Enthusiast
Mother of Jibril
Posted

My guess... and I'm not a doctor... is that your daughter has something else going on that's related to celiac disease.

Maybe it's something simple like a vitamin/mineral deficiency. A good place to start would be to ask a doctor for a CBC, a CMP (complete metabolic panel) and to check her B-12 and ferritin... it's very common for celiacs to have deficiencies. Anemia can cause joint pain.

What symptoms bother her in the car? I used to get really nauseated riding in the back seat. Good thing seat belts weren't mandatory yet, because it helped to lay down. Sitting in the front seat was even better... I still get nauseated if I have to sit in the back for very long <_<

webbydu Rookie
webbydu
Posted
  • Author

Thanks for your response. I've just found out how to get to my posts. I thought that email would notify me when I had an answer to my post.

We've had the CBC and it is all good. I willl ask for the CMP and b-12 and ferritin. (I think the ferritin is ok.) She is also having the itchy's after she eats. It is scarey - and so far we haven't got a solid diagnosis. Celiac and ... something else.

We are in New Zealand. I'm wondering if there is any forum member in Australia that knows of a good place in Australia to go for detailed, thorough allergy testing.

I'll ask in the overseas forum.

thanks

Liz

My guess... and I'm not a doctor... is that your daughter has something else going on that's related to celiac disease.

Maybe it's something simple like a vitamin/mineral deficiency. A good place to start would be to ask a doctor for a CBC, a CMP (complete metabolic panel) and to check her B-12 and ferritin... it's very common for celiacs to have deficiencies. Anemia can cause joint pain.

What symptoms bother her in the car? I used to get really nauseated riding in the back seat. Good thing seat belts weren't mandatory yet, because it helped to lay down. Sitting in the front seat was even better... I still get nauseated if I have to sit in the back for very long <_<

RiceGuy Collaborator
RiceGuy
Posted

The suggestion of B12 is a good one. Another is magnesium. Keep in mind that deficiencies don't always show up the way doctors like to see before suggesting supplementation, so make certain you get a copy of all the test results, and do not just accept a plain "yes" or "no" from the doctor. There may be several nutrients which are "borderline", or just on the low side of what is considered normal. Most nutrients can be supplemented without problems even if the levels are in the normal range. Iron is one to be careful with though, as it is easy to get too much.

Something else which can cause all sorts of pains is a yeast overgrowth, commonly known as candida. This is also common for those with Celiac. Though there are some tests which can be done, most doctors don't believe in it, so you may be on your own there. An anti-fungal such as caprylic acid can be very helpful, and it is safe even if there is no infection. Look up candida on this board, and you'll see many threads on the subject. The symptoms your daughter is experiencing may or may not fit the typical symptoms, but you might see some correlating factors if she has an infection of this type.

If your daughter is eating gluten-free breads, it might be a good idea to avoid them and see if it helps. Some people cannot digest one or more of the ingredients. Also, other top allergens may have become problematic, which is very common when starting out on the gluten-free diet. So she may need to avoid dairy, soy, corn, eggs, nuts, nightshades, or some other type of food. Dairy is often not tolerated during the healing process, so it would not surprise me one bit if that's causing her discomfort.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      @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...
    2. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      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!!
    4. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

      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 ...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,909
    • Most Online (within 30 mins)
      7,748
    Hmart
    Newest Member
    Hmart
    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.