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

New And Overwhelmed To The Gluten Free Diet

Janie10rg

Recommended Posts

Janie10rg Newbie
Janie10rg
Posted

About a month ago i had severe diarrhea all the time for about a week. I thought this was very abnormal. Also in the past i had the runs first thing in the morning or shortly after breakfast and this has been going on for a few years and i thought it was just lactose intolerance(but it didn't always happen if i had milk products).

I went to a walk in clinic since my pediatrician would take a long time to see me. So the doctor that i spoke to told me to go off milk for a week to see if i notice any difference and to take a blood test. They tested for many things.

The results from the blood work came back and I was quote surprised. I was told that something was wrong with my small intestine because I cant digest gluten. The doctor mentioned a bunch of tests to be able to confirm if i have celiac or gluten sensitivity but i cannot afford to do it right now. So for the time being the doctor told me to go on a meat and vegetable in soup form diet for a few days(im not sure why) and to avoid milk, bread, pasta, potatoes,lentils and processed foods. But this has made a huge difference. But now im allowed to eat fruit and not have food in soup form. The diarrhea has pretty much disappeared except i guess some thing that i didnt read the ingredients on has gluten in it. I also noticed the bloating i had went down too. And in a matter of a week i lost about 15 lbs. The doctor said I should expect to lose about 40. I was 165.Now 150.

I also have very low iron and vitamin B12. And as far as i know I have no idea where the gluten intolerance came from because i dont know of anyone in my family who has it. Diabetes is prevalent though.

I guess now i just want to know if i have celiac disease or gluten sensitivity and what the difference is? Because the intestine issue could be potentially serious and I do want to have kids one day.

I guess i'm just looking for other peoples opinions and experiences.

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

Celiac.com Sponsor (A8-M):


Cara in Boston Enthusiast
Cara in Boston
Posted

It would be helpful to know what blood test they did. See if you can get a copy of your results. If it was a full celiac panel, and it came back positive, AND you are feeling better on the gluten free diet then it is likely that you have celiac disease.

Not having anyone in your family with it is not a big deal. Many, many celiacs go undiagnosed (or misdiagnosed), so it could be in your family - they just don't know it. A family history of other autoimmune disorders is also a red flag.

It is my understanding that gluten sensitivity and celiac disease are different in that celiac disease is an autoimmune disorder, where your body is creating antibodies that attack your small intestine. Gluten sensitivity just means that when you eat gluten, your body reacts with uncomfortable symptoms. For the most part, the symptoms are the same and the treatment is the same - DO NOT EAT GLUTEN. Some doctors think being gluten sensitive is the "early stages" of celiac disease . . . you body just hasn't had any measurable damage done yet.

If you are unable to continue with further testing (biopsy) at this time, I would continue on the diet and enjoy the results. I would behave as if I had been diagnosed with celiac disease - NO CHEATING.

Cara

gatita Enthusiast
gatita
Posted

I'm new also and just want to say I know how you feel -- I've been wanting a definitive diagnosis too but can't really afford more tests.

I guess since the treatment is the same, it makes sense to just stick with the diet anyway, but I do understand your wanting to know exactly what it is. It sure seems that both celiac and gluten intolerance can sometimes be tricky to diagnose, though... my doctor thinks I should just accept that I'm doing better gluten-free and leave it at that.

Lolli Newbie
Lolli
Posted

The beginning is overwhelming.

All we can do is make a decision, committ to it, and continue to peel the layers of gluten off.

No matter what!

; )

GFinDC Veteran
GFinDC
Posted

....I guess now i just want to know if i have celiac disease or gluten sensitivity and what the difference is? Because the intestine issue could be potentially serious and I do want to have kids one day.

I guess i'm just looking for other peoples opinions and experiences.

Well, this Facebook link is working just the way I wanted. but the gist is that we don't know yet what NCGI does to a person or how to treat other than the gluten-free diet. It's from the University of Chicago Celiac Disease Center FB page.

Open Original Shared Link

The medical and scientific communities still don't fully understand the mechanisms (pathogenesis) of gluten sensitivity. There's currently *no* scientifically/medically-approved screening test, but it's one of our research priorities to find a marker for it.

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

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

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

      Methylprednisone treatment for inflammation?

      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...
  • 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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • 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.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      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.