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

All The Symptoms But Negative Blood Work...


~TheFanny~

Recommended Posts

~TheFanny~ Newbie

Hello everyone, I am a 29 years old Female, and not getting any younger OR healthier. I actually started having all sorts of symptoms when I was 23. The doctor just said that I had IBS... Typical I know.

Long story short is that I was super healthy, looked great in a bikini, and now, 4 yrs later, the weight gain slowly started, I couldn't lose it, I had what I thought was bad IBS-A, and thought that was the problem. Well now I have gained a total of 92 lbs (I'm 5' 11") and all sorts of symptoms.

-diarrhea, headaches, back aches, major knee joint pain, fingers are sore, feels like my whole body aches, numb shoulders, hands and feet, stomache pain after I eat certain foods, bad brain fog, super SUPER tired all the time but can't sleep at night, anxiety and depression, stomache bloated to look 5 months pregnant... I can't think of anything else at the moment...

But a few people including my husband got worried because my health was bad and I gained so much weight and even when I dieted and exercised I didn't lose anything. So my husband was worried. I got to doing some research and kind of self diagnosed myself. So I talked to a lady I know who has celiac disease and she gave me a lot of tips and advice.

Well, since I didn't have health ins. I decided to just go off gluten and see if it helped... Well after a few days I noticed some change... I didn't have to run to the bathroom after 5-30 mins after I ate! So, once I got ins. I went to my Dr. For a checkup and told him what I had done. He said it sounds like I have at least a gluten intollefance and he wanted to try a blood test... I said I was off gluten for 3 weeks and the blood work will most likely come back negative.... He said he wanted to try anyway. So we did and I was right. Heathen asked if I wanted to do the scope and I said no.... Mainly because I don't want to start eating gluten just to get the best results... I would like to know but at the same time, I have tohavesome sort of allergy to it or I wouldnthavebeenfeeling a bit. Better already...

I guess I am wondering,should I still do the scope even though I have been off gluten for 3 weeks?

Anything helps! :)


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

As long as you don't need an "official" diagnosis, then I would just keep doing what you are doing. If you feel you would need results for something in the future, you might want to do it now; it sounds like going back on gluten after being off it makes reactions so much worse!

Best wishes to you!

IrishHeart Veteran

If you want a Celiac diagnosis, you will have to go back on gluten for a few months and have a biopsy.

Just doing a "scope" is not a diagnostic tool. You need a biopsy.

Celiac is not an allergy. That is a misnomer.

It is an autoimmune disease.

You can have a wheat allergy, but that is a different mechanism.

Your symptoms are significant, so it is worth checking out.

You could also have NCGI.

squirmingitch Veteran

The scope & biopsy won't be any good just like the blood tests b/c you have been gluten free. So, like IrishHeart says, you would have to go back to eating gluten.

Do you intend to have children? Do you have children? Children would be the only reason I personally would want an official dx. And the reason for that is to help get your children dx'd IF they turn up with celiac disease also. And you would want a dx for children b/c it makes a big difference in school, college & the military as far as them being protected b/c they would have an official dx.

Pac Apprentice

If you can get the scope (+biopsy) done soon, then I would do it, even on gluten-free diet. Negative results don't mean you cannot continue eating gluten-free. Intestine healing might take up to two years so after a month gluten-free you still have some chance, especially if your doctor seems to be aware that you might get false negative results due to being alreagy gluten-free.

I only got scoped 6 week or so after going gluten-free and there was still some minimal damage visible. I got diagnosed with celiac based on that and my reaction to gluten-free diet.

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

      Help I’m cross contaminating myself,

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

      What are Celiac Disease Symptoms?

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • 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.