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

What Did Your First Symptoms Feel Like?


RelentlessX

Recommended Posts

RelentlessX Newbie

I've been searching around and noticed not too many have had the symptoms that I had with mine. I'm wondering maybe someone here had similar ones.

The first couple of times it happened it was severe stomach pain. Not around the bellybutton, but exactly where your stomach is located. It felt as though it were going to burst. I couldnt lie down or even sit without pain, and doing so made it worse. It seemed during this pain my back area would start hurting as well, but this could be related to how I had to sit. There was a time though when my back started hurting I knew the severe stomach pain would start up less than an hour later. Along with this I seemed to (sorry for being graphic) vomit every time I got this pain. The pain would go on for 6 hours (longer about 4 or 5 times after the first occurrence), and I would only vomit about the last hour or so. Also after doing so, if I were able to lie down with minimal pain, it made it go away quicker. During these times I dropped 35-40 lbs. This was only in about two or three months time. After the intense 6 - 12 hour pain session I felt really bad for about a week. Eating anything just upset my stomach. It's not the severe pain, but just a general feeling of yuckiness. Now when I eat anything that could have gluten in it (just small amounts without my knowing) I just feel achy all over.

I know this was quite long, but I am not only new to this site, I am new to celiac and it really scared me the first couple of times it happened. So any advice or help would really be appreciated. It's a nice feeling knowing you arent the only one sometimes. =]

Please share your stories as well. I am really interested in knowing. =)

Thanks!


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



Celiac.com Sponsor (A8-M):



prisskitty Rookie

For the past 2 1/2 years I have had severe stomach pain that has put me in the hospital. I found out I had a hernia and I gave up and considered that to be the only problem. But, nothing has improved, nothing did improve on medications either. I could take 80-100 MG of omeprazole, nexium, or kapidex and not get any results.

I am constantly hungry. I mean ALWAYS hungry even when my stomach is beyond full. Then, when my stomach is full with (gluten) I get severely sick, my breathing increases, and later on my stomach hurts.

I didn't even consider gluten until I met my friend Christina. She was met in college where she has celiac disease and the genetic marker. I am a 'giver'. I love to give gifts. I would always have food and I felt horrid coming in there with a sandwich or salad with croutons. So, I would always bring her Peeps or Peanut Chews.

I talked to her about the whole gluten-free diet and what the symptoms were. I researched it a bit but since I'm so overweight I dismissed it and moved on.

Then, she showed me a picture of her back when she was eating gluten before they diagnosed her. She was like 260+lbs. It made me rethink it. I have acid reflux every single night (I did until I started eaten gluten free. I went gluten free and within a week I only had mild reflux after tomatoes or extreme acidic foods.)

Something that happened to me that no doctor has ever, EVER been able to point the problem out.

I was clubbing with family and we stopped at a bar. I got a cheap ol' beer, huge one, about 34 oz. I drank it very fast, it did make me a little drunk but not majorly. We werent driving for another 6 hours so I didn't really care about that. Then, we were walking outside in the heat and I hadn't eaten. I'd only drank the beer. So we went and got something to eat. I know it contained gluten, just not sure what it was since it's been a year.

We didn't ever go clubbing because the club we wanted to go to was without AC. Of any sort. No fans, nothing.

So we went home. I went to bed. Within 20 minutes of lying down my entire body went into shock and I had major chills. I was sweating, I was sick to my stomach but not throwing up, and I went almost completely anemic. They called the rescue squad but they had no idea what was wrong with me. You couldn't touch my body! Every single fiber of anything felt like knives. I've looked over and over and over again for reactions to beer like this and can't find anybody else. This happened exactly 13 months ago.

I didnt go with the squad and I just ignored it because it went away in 10 more minutes. It was so intense though I thought I was dieing.

So, four months later, I had a couple of beers with co-workers at a party and didn't have a reaction. I was like, well this is cool, I can drink beer. But, I had 90% wine that night.

Then, sometime a couple of months ago during New Years I had a few more beers. I had the same chills but they were extremely intense. I had them again while I was on an antibiotic too. And, then, I was prescribed hydracodone. Immediately reacted to it by throwing up.

All these items are gluten-containing.

sb2178 Enthusiast

You might want to actually head off to the hospital or check in with your doctor about that-- it sounds a little like it might be pancreatitis (not uncommon among celiacs). If it's acute, I think they can treat it and you might be able to avoid developing it as a chronic problem.

Also, I've found that "digestive enzymes" help a lot with general stomach pain after eating as well as with absorption. Enzymatic makes these Digest Gold ones that are amazing but wicked expensive. Whole Foods carries a few different brands.

Archived

This topic is now archived and is closed to further replies.

  • 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. - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    2. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    3. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

    4. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    5. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748

    tcpb
    Newest Member
    tcpb
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.