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

Diagnosed 2 Weeks Ago

pnltbox27

By pnltbox27
in Coping with Celiac Disease

Recommended Posts

pnltbox27 Contributor
pnltbox27
Posted

hey guys my name is rob im 37 years old and the doc told me 2 weeks ago i had celiac disease, ive been gluten free for 4 days or at least i think i have . its pretty overwhelming looking at food labels for everything. man i didnt realize how many products had gluten in it. my entire pantry is off limits.i think i got a pretty good start on the gluten free diet, but my question is are there different levels of celiac, because my only symptoms are EXTREME GAS and diarreha which ive delt with pretty much my whole adult life so it just seems normal to me. my wife and coworkers beg to differ lol which is why i went to doc in the first place.it seems from reading these forums most people have some pretty severe reactions to gluten, so i guess what im wondering is it normal to expect my condition or the reaction to gluten to get worse over time??

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Rob:

Welcome to our world.

Celiac can have over 200 symptoms and you seem to have just a few. Perhaps you are one of the lucky ones that get an early diognosis. But, on the other hand, there are several people here that have Celiac and they have no symptoms. Celiac can cause damage, even if you are non-symptomatic.

I would not expect that you symptoms to worsen if you are totally gluten free. If so, they will improve greatly.

As you noted, gluten hides everywhere. Soy Sauce, toiletries, lotions, shampoos, (lipsticks ;) ) and cross contamination is a biggy.

There are some great folk here that can get you started with some gluten free grocery store products, that will be helpful.

Again welcome and feel free to ask away...

Lisa

CarlaB Enthusiast
CarlaB
Posted

Welcome!

Rob, for a pregnant woman a test is either positive or negative. Obviously the baby grows from being very small to quite large, but whether or not she's pregnant does not depend on the size of the baby.

In the same way, you either have celiac or you don't. The variable is how much damage you have.

Once you start to heal, you will most likely become more sensitive to small amounts of gluten. I have another analogy. Think of a smoker. The smoker's health is generally bad, so he quits. After some time goes by, a single cigarette will make him sick, where he used to smoke a pack or two a day and never felt sick from one. This is how it is, you felt bad in general (gas and diarrhea is not comfortable!), then you go gluten-free and a small amount makes you feel ill, but your overall health is very much improved.

Hang around, you'll learn a lot!

cathzozo Apprentice
cathzozo
Posted

Rob,

You may notice over the next few weeks that some weird symptoms that you would never connect to Celiac are better. In fact, they may not be symptoms that you really even noticed or thought were worth addressing. I never realized how badly my shins always itched until they stopped itching. Then the next time I got glutened, I realized, oh yeah - my legs used to feel like this all the time - how horrible!

It's possible for your reaction to gluten to become more severe or just change slightly once your intestines have a chance to heal. So you may become more sensitive or you may not. But since you currently have diarreha, you probably will continue having that as a symptom. You'll probably be able to tell when you accidentally get glutened.

Good luck on the diet!

happygirl Collaborator
happygirl
Posted

Rob,

Just wanted to welcome you to the board. You have been given some great advice so far.

Celiac Disease is Celiac Disease.....some people have NO symptoms, some people are debilitated by all 200 symptoms, and everyone else lies somewhere in between. Ingesting gluten sets off the autoimmune response (turns the switch "ON") and our goal is to keep the switch set to OFF. Doesn't matter if you know its been turned on or not--damage can still occur, even without the presence of symptoms. Lesser symptoms doesn't make you a lesser Celiac... :)

Stick around and ask away....

Laura

pnltbox27 Contributor
pnltbox27
Posted
  • Author

thank you all for the awesome advice ,it really helps, i am absolutly ready to commit to this huge life change.after reading some of the posts in other threads i kinda felt like my symptoms didnt merit such a huge life change, but with your help i realize celiac is celiac and the best thing is to get this thing in check. so thanks again ive learned more on this site in 2 days than my doctor ever told me about celiac he just told me i had it and sent me on my way

zansu Rookie
zansu
Posted

The worst celiac symptoms are the ones YOU have :lol:

the ones other people have can't possibly as bad ;)

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

Celiac.com Sponsor (A8-M):


pnltbox27 Contributor
pnltbox27
Posted
  • Author
The worst celiac symptoms are the ones YOU have :lol:

the ones other people have can't possibly as bad ;)

you are probably right .but ive lived with them for so long without knowing what was wrong it somehow seemed normal

happygirl Collaborator
happygirl
Posted

Rob, I think your experience with a lack of knowledge from the general medical community is very common, unfortunately. Many of us have experienced the same thing, which led us to read, research, read journal articles, asking questions, etc. We learned that it was up to us to learn what we needed.

Its frustrating, but I've learned that generally, those who live this every day are the ones who know it best! Plus, this board has a self-check feature per se, in that people post, and if incorrect information is posted, generally, someone will come along to correct it. There are a lot of seasoned celiacs on this board with invaluable information.

pnltbox27 Contributor
pnltbox27
Posted
  • Author
Rob, I think your experience with a lack of knowledge from the general medical community is very common, unfortunately. Many of us have experienced the same thing, which led us to read, research, read journal articles, asking questions, etc. We learned that it was up to us to learn what we needed.

Its frustrating, but I've learned that generally, those who live this every day are the ones who know it best! Plus, this board has a self-check feature per se, in that people post, and if incorrect information is posted, generally, someone will come along to correct it. There are a lot of seasoned celiacs on this board with invaluable information.

thanks again to all of you its nice to know that there is help out there

DebbieInCanada Rookie
DebbieInCanada
Posted
... There are a lot of seasoned celiacs on this board with invaluable information.

But we are all seasoned with gluten-free spices, and no MSG!! :P:lol::blink:

(Ok, and some of us think we have humor too)

Debbie

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):


  • 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.