Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Newbie Here!
0

3 posts in this topic

Hi everyone, I just wanted to post a simple intro topic.

I come to this site looking for advice on my rather recently known condition. I'm in my third year of college and was having a great summer until about the middle of August (2 weeks before college starts), which is when my life spiraled downhill fast. I was confined to bed with crippling abdominal pain, nausea, nosebleeds, and extreme exhaustion (I was sleeping 16 or so hours a day). The abdominal pain was so intense that it had me at various doctors getting ultrasounds, a CT scan, I was even in the ER. I was on strong painkillers which only touched the pain. There was a growing list of diagnoses that were being ruled out. Finally, my doctor looked at me and said: "you're constipated, take some Miralax and you're going to be fine".

I was not fine afterwards as the symptoms remained, I had come across celiac disease and gluten intolerance through web searches and said "well, I've got nothing to lose" so I cut out gluten. Within about a week I did a complete turn around of my symptoms. Plus, I felt even better than I did before I got sick. The persistant acne that I fought with everyday, I cursed at because it wouldn't go away not matter what I did, suddenly cleared. The red, bumpy, peeling rash I had on my hands for the last 3 years suddenly turned into baby-soft smooth skin. My brain felt clear. I had boundless energy. The bloating that I had for the past several years, which made me look pregnant and killed my self esteem, started to go away. I no longer felt like I was going to pass out every time I stood up. No more nosebleeds. No more waking up with extreme nausea. Abdominal pain gone as well. It was like a miracle had happened.

According to my doctor, "it [celiac disease/gluten intolerance] does not present itself this way". That combined with starting college, I've never been tested for celiac disease. However, I'm not an idiot and can read what's being put in front of me. I'm going to a different doctor if I go back during break, by the way. That one was just filling in temporarily as mine was on vacation - I just needed to see someone before college started.

Anyways, story over. Now I'm here to find out some ways to cope with the obvious intolerance to gluten. I've also found myself in a tough situation. It seems that xanthan gum causes problems similar to gluten (basically feel like I'm going to pass out when I eat the stuff). I'm also finding re-emerging symptoms (rash, depression, fatigue, cloudy mind, nosebleeds) even though I'm eating "gluten free" foods. So I think I must be intolerant to something in those supposed "gluten free" products. I'll poke around the forums because I definitely have a lot I want to learn. I'm want to learn what other intolerances tag along with gluten (I was actually diagnosed lactose intolerant in 2007, so that's a known one already). I want to learn which tests to get done too, so when I go home on break I might be able to schedule testing.

Okay, I will end this post now. Sorry, this is so long, I always tend to write too much!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Nope, not too long at all! Welcome. What a beautiful story of figuring it out all on your own! I just want to say that your intolerance to gluten can become more sensitive and what you are experiencing is quite commonly reported here. That feeling wonderful is followed by feeling uggy again. Sometimes it is other intolerances and sometimes it is your body letting you know you have encountered CC, otherwise known as cross-contamination. Traces of gluten are difficult to eliminate but your body will let you know when you don't. Xanthan gum bothers some who are intolerant of corn. It can also just be something you are intolerant to even if you can eat corn. You will learn a lot by reading and your body will tell the rest of the story by trial and error. I'm so happy you didn't have to go to Dr.'s for years with them telling you that this is not how Celiac presents. This is very much how Celiac presents! And you figured it out! I am very happy for you and I hope you can find a way to eat safely at college!

0

Share this post


Link to post
Share on other sites

Kudos to you for removing gluten from your lifestyle! You could try Guar Gum which is not made from corn.. Many of us have allergies to other foods ie: nightshades, soy...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,634
    • Total Posts
      918,415
  • Topics

  • Posts

    • amalgam dental fillings - remove or not?
      My friend, I'm sorry to hear of your pain. I don't know if mercury is related, but I will give you my brief experience. I went through so many health issues, medications, and dr's and nobody could find anything wrong with me, but I knew something was wrong. I've been through many doctors, shots, pills, etc and nothing helped. For me it all came down to gluten. I had blood tests that shown the antibodies and the endoscopy that proved I had celiac, which I don't think is needed. If your body makes the antibodies I can't help to believe you have it. Anyway, long story short. If you are sick, you are sick and if a doctor can't find the reason, move on to a new doctor. Celiac, at least for me was simple. Stop eating gluten and every other health problem goes away. I have 30 + year old amalgam fillings and I feel amazing as long as I don't put anything in my mouth that isn't naturally gluten free, which means I only eat meat and vegetables. Our bodies are all different. I guess my only advice to you is if you're sick, your sick. Nobody lives inside your body but you and you know best if you feel better. Don't be afraid to stand up for yourself. 
    • healthy bread recipe?
      Ok thank you for the input! I am happy to hear what you think about her biopsy. Her GI is actually getting a second opinion from the celiac specialist. Our appointment is in a week. I have always thought she had celiac too. I asked them to do a biopsy years ago and they did but it was normal. She has more neurological symptoms than GI. She has headache and POTS. But she was reacting to all kinds of foods all of the sudden a few months ago. The low histamine diet really helped and she tolerates more foods now. I make almost everything from scratch, there is no gluten anywhere in the house and I don't use gums because she and I react to them. Breakfast is the hardest. Eggs are high histamine, she can't have oats, can't have fermented foods (yogurt), Breakfast is a nightmare. Many fruits and veggies are high histamine. She eats the ones she can tolerate. That's why I was asking about breads. What do you eat for breakfast? Are flax seeds safe or are they like oats? I can't find any flax seeds that say certified gluten free.
    • Could this be celiac or is it really just IBS?
      Hi! So I've never posted in a medical forum but y'all seem super helpful so I figured I'd throw this out there! Sorry if this is long lol. Basically, I'm a 22 year old who has stomach problems for as long as I can remember and it's recently gotten worse. I remember having bad stomach aches and diarrhea off and on since I was little. I finally told my parents and saw a GI in high school who took an xray, said it was IBS, and told me to eat more fiber. Around the same time I was feeling weak all the time and I was having what kinda felt like panic attack symptoms without the actual psychological panic. It kind of felt like a hot flash or too much adrenaline? I just kept telling the doctors that I felt "off". I was also diagnosed with atrial flutter, sinus tach, and asthma for no apparent reason, and I just felt like crap in general some days with no explanation.  I leaned to deal with my stomach problems because everything seemed to come and go. Oddly enough when I went away to college it was a little better for my first year or two. Fast forward to about a year ago, and it started getting more consistent so I went to a new GI. She ordered an ultrasound of my abdomen and from there I actually found out that I had a poorly functioning gallbladder (without stones). I had that taken out in November and have not felt any better since. What's weird is that I never had what I would consider "gallbladder pain", as there really isn't a particular spot that hurts every time. Also I want to add that I am a super levelheaded person, so my doctor telling me it's IBS and to cut stress and see if it helps makes me roll my eyes. This is often how my diarrhea starts off these days: I'll feel bad hot flashes or just "off" and foggy for no reason, then hear the gurgles, get pain, and then diarrhea. Most of the time I feel better after that; sometimes I don't. But I think it's weird that I often feel fluish before my stomach even starts hurting.  Basically I just have all these weird vague symptoms that don't seem related and have been coming and going since at least high school. My current GI doc ordered IGA and IGG tests last summer which came back negative. She also did a colonoscopy a few weeks ago and that was negative too. Now she wants to do a small bowel xray with barium.  Here are my main symptoms: diarrhea 2-6 x a day (it ranges from just loose stools to full-on watery)  severe bloating to the point I look pregnant weird hot flashes that seem correlated to my stomach problems headaches had my gallbladder taken out even though I'm 22 and normal weight short stature (4' 10") nausea bad eczema   Does this really seem like IBS or could my blood results be wrong? My doctor seems to think she's thoroughly tested me for celiac. Would the small intestine xray show any of that? Thanks in advance!!!    
    • Diagnosis and Test Results
      I have been struggling with  symptoms for over a year and had lots of other testing done by my GI.  She did the celiac disease blood test a few weeks ago.  It came back positive for the two genetic markers but my antibodies were negative.  I received the results by phone from the (stupid) nurse who only relayed to me that "your tests showed that you are positive for Celiacs Disease.  you need to go on a gluten free diet and follow up in a few months".  I was so surprised by what she said it didn't even occur to me to call the doctor directly so I took it upon myself to research the disease and going on a strict  gluten free diet.  The first two weeks were horrible!  EVERYTHING I ate gave me diarrhea.  After two weeks, I started to feel better but anytime I inadvertently ate gluten by accident or was cross contaminated, I had horrible diarrhea again.  I spoke with my GI doctor today (I work at the hospital where she works) and she explained the blood results better to me.  (I still haven't expressed my anger about the nurse to her yet...but I will!) It doesn't make sense to me that I have the gene, have been experiencing IMO full blown symptoms (significant weight loss, malnourished, diarrhea, migraines, increased depression/anxiety, etc) but my antibody test was negative.  Could it be lab error?  I asked about an endoscopy and she said we could do it but it still may not confirm the disease.  I've also researched IBS and I don't seem to match up with those symptoms. Part of me wants to know if I have a gluten intolerance or the actual disease.  Either way I'll continue to follow the gluten-free diet but I think it's important to know if I have an autoimmune disease correct?  Or does it? Just looking for some guidance...
    • healthy bread recipe?
      Absolutely, absolutely, absolutely!!!!!!! Your doctor seems to think all her villi have to be completely wiped out for her to be celiac. Like cyclinglady says.... get the records & get a second opinion. BTW, I happen to agree with all the rest she said too but I just wanted to emphasize the second opinion part.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,724
    • Most Online
      1,763

    Newest Member
    xwalt
    Joined