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

Should I Wait For Results?


msb11

Recommended Posts

msb11 Newbie

Hi...I am obviously new here...I just had a blood test yesterday (so did my 6 year old daughter). My question is whether or not we should wait for positive results to go gluten free (knowing that we may have to do biopsies). Here is a little background on us:

-My daughter, who is 6 now, was diagnosed with severe GERD at 6 weeks and was medicated until 12 months. She has always had problems with constipation which we usually manage with Miralax. Recently we went through an 8 week phase where she wasn't eating because she would instantly have diarrhea or the feeling of needing to vomit when she ate. She also vomits way more often than any of her friends. And, she has recently been referred to a play therapist to help us learn to deal with her anxiety issues (also because we were worried about possible anorexia issues). The phase of not eating has come to an end after being treated two different ways for a never confirmed parasite (I have since read that the treatment could temporarily mask Celiacs GI symptoms. She had a Celiac's panel blood test yesterday (9-28-10).

-Now for me...recently my hair has began falling out in handfuls in the shower. My hair has slowly been thinning for a few years now and I have had all the normal tests (thyroid, hormones) come back negative. But, in June it began falling out at an alarming rate. My doctor ran all the same tests again and switched my BCP, all came back negative. She then referred me to a dermatologist who did a skin biopsy to test for Lupus, which also came back negative. While waiting for those results I researched Lupus and was convinced I had it based on so many symptoms I thought were unrelated. When I blogged about my frustration at not having Lupus (crazy I know, but I wanted an answer), a friend suggested I get tested for Celiacs. I am convinced I am at least gluten intolerant. Here are my symptoms:

-severe anxiety leading to depression since childhood (have been medicated almost continually since 2003)

-something I have always called "a nervous stomach" (diarrhea, especially when stressed out)

-unexplained swelling of hands and feet (was even sent to Children's Hospital when I was 13 with no real answers...was told may be beginning of Rheumatoid Arthritis)

-unexplained HUGE bruises on my legs with no trauma

-Chronic fatigue (I can sleep 10 hours a night and still need a nap in the afternoon and fall asleep on the couch by 9pm)

-hair falling out

-just always feeling down and achy...it hurts to have my husband hug me too tight

Add to this that my mom has sjogrens, fibromyalgia, numerous issues with her reproductive system, blood clotting disorder (I have asked her to get tested!).

I just think it fits...any advice? Should I wait for results or just eliminate gluten today? Thanks.


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



Celiac.com Sponsor (A8-M):



Dixiebell Contributor

Hi! Welcome. You should continue to eat gluten if you want an endo. I think your daughter for sure needs to have the endoscopy to rule in or out other problems. As soon as the endo is done you can go gluten free. Have you and your daughter had your vitamin levels checked? If not, you should do that too.

msb11 Newbie

Hi! Welcome. You should continue to eat gluten if you want an endo. I think your daughter for sure needs to have the endoscopy to rule in or out other problems. As soon as the endo is done you can go gluten free. Have you and your daughter had your vitamin levels checked? If not, you should do that too.

I don't think that either one of us has had vitamin levels checked. I am actually the one who requested that our doctors test us for celiacs. Neither of our doctors even brought it up as a possibility.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

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

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    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

    • 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.