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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.