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

Classic Celiac?


XxKittykat

Recommended Posts

XxKittykat Rookie

Hi, my name is Kat. I'm 16 years old and I believe I am celiac. I suffer from severe lactose intolerence, I have fibromyalgia, acid reflux, insomnia, and subluxation. Over the past 2-3 years I have been having strange, unexplainable symptoms. One of the biggest includes bouts of loud, powerful burping, uncontrollable vommiting (large amounts at a time), and horrible bloating with stomach pains. I have felt stomach cramps, stabbing sensations, stomach aches, a feeling in the stomach that I need to burp (this causes me to be unable to sleep lying down at night), and loud stomach sloshing...also, I have felt slight twitches in my stomach (this I believe is caused by food digesting). In addition, I have had headaches, sore throat, itching, an odd rash on my abdomin, hair loss, back/knee/wrist pain, insomnia, poor appitite, buring stomach sensations, weakness, tiredness, intestial pain, unable to urinate dispite drinking loads for water, dizziness, sores in the mouth, hands and feet keep falling asleep, brittle nails, anemia, gas, constipation, muscle cramps, unexplained loss of tooth enamal, and weight loss. I am 5'4" and currently 77 pounds (since begining a gluten-free diet I have gained 4 pounds in 4 days). Last week I removed gluten from my diet and saw an improvment - I had more energy, I have been more upbeat, less bloating, less burping, less vommitting, and sleeping more often. I had been feeling great until yesterday when I had eaten out at the local Bill Millar's - veggie soup, french fries, and a side of beans. Instantly I felt horrible and I've been vommitting and bupring all over again since I woke up this morning and I can't bring my horribly painful bloating down. Sounds like celiac to me! What do you all think? I'm new on here and I have no one else to turn to. Every doctor I've seen wants to shove meds down my throat, send me to an eating disorder counselor, tell me it's "all in my head", or pass me along to another doctor who does the same thing. I've already been tested for lupus, chrone's, and something else that I can't seem to remember. All tests came out negative. It is not candida either, I've been tested and went though that diet for some time (w/o removing the wheat though). Thanks for your time and I appolozige for this post being so long (this was the short version by the way!). I'm starting college full time this fall and I want to be well. My parents don't know what to do with me anymore, I spend so much time in bed moaning and groaning in pain :)

- ~*~Kat~*~ the lost girl who doesn't know where to go


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Kat, have you been tested for celiac disease? If not, request that now, if you have and that has come back negative, then certainly, go gluten free. If you felt better for a few days, then go for it, but you have to go full force. You can't just be gluten free most of the time, you have to be gluten free all of the time. A gluten free person, must be "free of gluten". In the beginning, stick to natural foods, whole foods--nothing processed. Go to the library and check out the book called "Gluten Free for Dummies", its a great book, very helpful. "The Gluten Free Bible" is very good too, as is, "The Gluten Free Connection." The forums are very helpful, although sometimes I think they can be confusing when there is arguing going on about certain items, try to stay away from those threads.

You sound like you have a lot going on. See if you have a celiac support group in your area and maybe someone who can help you get started on your path to good health, someone to take you under their wing. Feel free to email me anytime with questions-- darlindeb25@aol.com .

Good luck, Deb

stef-the-kicking-cuty Enthusiast

Hi Kat, if you want a celiac diagnosis, you can NOT go glutenfree BEFORE the tests or the results could be wrong.

Yes, I would suggest, you go to the doctor and request the tests. There are also some doctors out there, as you already know, who will try to ignore you and say you don't need the tests, because they think, it's all in your head and you can't have celiac. How can they know, just by looking at you? That's impossible. Depending on the area, where you are from there might be very good doctors around, that are knowledgeable with celiac. So you might consider asking somebody, could be us, if we know a good doctor in yaddidi yaddida area. Cause you didn't put in your info, where you are from, so I assumed, you don't want to tell us.

Good luck in finding out and welcome to the board.

Oh, btw, it sounds like celiac to me, but I'm not 100% sure, cause I'm not a doctor. You better go and get checked.

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?

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

      I think I am gluten intolerant

    5. - klmgarland posted a topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • 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.
    • klmgarland
      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!   There I feel better getting all that off my chest but I feel isolated and alone in this journey. I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me, I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety. Can anyone point me in the right direction? Thank you,  Helpless but Hopeful
×
×
  • 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.