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

Not Sure I Belong Here


newbieva

Recommended Posts

newbieva Rookie

I am not sure I belong here, but am going to discuss what I am going through and see what you think. I would greatly appreciate any input as I am not sure what to think right now.

If I think hard about it, my problems may have started as early as 14 years ago. I had chronic diarrhea with mucous. I lost about 10 lbs. I passed what I thought was a worm and the probem went away. Gross, but true.

I didn't have "new" issues until after my gall bladder was removed several years ago. Everyone in my family has theirs out in their 20's and I was no exception. Anyway, since then, I have explosive episodes of diarrhea after I eat. My husband is getting pretty frustrated because I "don't" go before we leave the resteraunt. I tried explaining to him that I don't have to go then. It comes on quickly and I have to go "NOW". Sometimes it is an oily, yellowish discharge. Sometimes the stool floats. My husband has joked when I have been on the toilet at home that he thinks there is something "wrong" because of the smell. The only time I can remember having a "break" from this issue was when I went on a low carb diet. The problem essentially went away.

Other Celiac-ish symptoms I would have never thought could be related to this. I have been on an antidepressent for about two years now for Premenstrual Dysforic Dysfunction. I would have these emotional, angry outbursts that the doctor thought were related to my period, etc. I am chronically tired. I have the "fog" that I have read others have. Not all of the time, but often at work, I can not get motivated to do anything somedays. While I don't think that I have the dermatitis issue, I can tell you that I have had rashes on the backs of my knees that were so itchy I thought I was going to draw blood. I haven't had it in quite a while though. My family is of Italian decent and we have quite a few people with Type I and Type II diabetes. I have read there is a high incidence of celiac in the Italian population...go figure, I love pasta and bread.

I chalked the whole thing up to my gall bladder removal until recently. I bought Alli and was reading through the materials. I started reading about the treatment effects brought on by too much fat in the diet, etc....The treatment effects sounded so much like what I am going through now!!!!! So...I started doing some reading on malabsorption, etc...I thought what I had sounded like Celiac, but would really like some expert advice from those on this board.

I have an appointment with a Gastroenterologist on August 2. How long does it take for labs to come back? Will they do a colonoscopy?

HELP!!!!!! THANK YOU!!!


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

It sound like you belong very much here. Please read as much as you can from the post and I think it is open up new avenues for you. And the information gathered here will help you direct your doctor to a proper diagnosis.

Self education is often the road that many of us have traveled. Your symptoms sound very classic.

Welcome to the Board.

holdthegluten Rising Star

Your GI doctor should schedule you for a blood test (celiac Panel). If your results are positive for ttg,ema antibodies then she might schedule you for an upper endoscopy, but not a colonoscopy. Ask your gi doctor for the celiac blood test. It should take a few days to get your results. In the mean time dont go gluten free as it will affect the accuracy of the test. Your symptoms sound like celiac by the way.

Guest j_mommy

I agree they do sound like Celiac. My blood tests came back in about 3 days! Definetly stay on gluten until your tests and possible until after your biopsy. We had no idea what I had and scheduled a endoscopy and colonscopy before my blood tests even came back. So that is also a possibilty you could ask your Dr about, that was if your blood tests come back negative....you can still have things checked out!!!

Good luck!

SunnyDyRain Enthusiast

The Gastro will probally want to do an Endoscopy(small intestine) on you. He may want to do a colonoscopy(large intesine) just to check things out, but to biopsy with Celiac, it's an endoscopy.

I agree with others that say it does sound alot like celiac, however alot of things sounds like celiac and celiac sounds like alot of things!

I swore up and down for probally 6-8 monthes before getting diagnosed that I was celiac. I tested it, If i was having an important day (big meeting at work, going on long car trip, hot date...) I'd avoid wheat products by ordering steak not pasta, having chicken tenders, not the grilled chicked sandwich. I wasn't "gluten free" those days, just over all avoided large amounts. This made my life bareable. Not having a daignosis, It was hard to do for more than a day or two. Perhaps you can just try it... be sure not to cut out gluten entirely, and as you get closer to the test dates, make sure you eat it... If you stop eating gluten and you celiac, your body stops creating the antibody and then you get a negitive test!

Most impoertant thing is to go to the doctor with information, facts, and demand the tests. Many doctors don't know much , or know wrong stuff. Some will say "I don't think it sounds like celiac" You need to demand it. Also if all tests come back negitive, dont' get discouraged, try the gluten-free diet for a few monthes and see if it helps. Many people on here have neg test results, but still see great dietary response.

Good Luck and Welcome

Lolabell Newbie

OH MY GOSH!!

You just basically told my life story...(except for the worm thing...LOL) I too have the post Gall Bladder surgery (3 years ago), explosive gotta go RIGHT NOWS. Also, brain Fog/ PMDD etc. etc. I assume you have weight issues if you purchased Alli. Out of curiosity, did your weight issues escalate after the surgery? I've always been pleasantly plump, (size 14 tall), but I have gained A LOT of weight over the last few years. I went from overweight to morbidly obese over a 3 year period.

I have yet to be diagnosed, but it is on my top priority list for this week. Maybe we can tackle this beast together.

newbieva Rookie
OH MY GOSH!!

You just basically told my life story...(except for the worm thing...LOL) I too have the post Gall Bladder surgery (3 years ago), explosive gotta go RIGHT NOWS. Also, brain Fog/ PMDD etc. etc. I assume you have weight issues if you purchased Alli. Out of curiosity, did your weight issues escalate after the surgery? I've always been pleasantly plump, (size 14 tall), but I have gained A LOT of weight over the last few years. I went from overweight to morbidly obese over a 3 year period.

I have yet to be diagnosed, but it is on my top priority list for this week. Maybe we can tackle this beast together.

Thanks so much for writing back! I have been pleasently plump since getting married. Yo-yo dieter. Currently, not real happy with the weight, thus the Alli. I, too, ahve gained alot in the past few years. I forgot to mention that I also have polycystic ovaries and adenomyosis. Thus I have painful ovulation and not very consistent periods. Not sure if that is related or not! I would love to try to tackle this together. I opted to go to a Gastroenterologist and bypass the general practitioner so that I could get a straight answer! Are you going to the doctor this week?


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



Celiac.com Sponsor (A8-M):



newbieva Rookie
It sound like you belong very much here. Please read as much as you can from the post and I think it is open up new avenues for you. And the information gathered here will help you direct your doctor to a proper diagnosis.

Self education is often the road that many of us have traveled. Your symptoms sound very classic.

Welcome to the Board.

Thank you!!! I have been spending ALOT of time on this board today reading!!!! Learning quite a bit and am feeling more and more like I may have some issues that need to be addressed.

newbieva Rookie
The Gastro will probally want to do an Endoscopy(small intestine) on you. He may want to do a colonoscopy(large intesine) just to check things out, but to biopsy with Celiac, it's an endoscopy.

I agree with others that say it does sound alot like celiac, however alot of things sounds like celiac and celiac sounds like alot of things!

I swore up and down for probally 6-8 monthes before getting diagnosed that I was celiac. I tested it, If i was having an important day (big meeting at work, going on long car trip, hot date...) I'd avoid wheat products by ordering steak not pasta, having chicken tenders, not the grilled chicked sandwich. I wasn't "gluten free" those days, just over all avoided large amounts. This made my life bareable. Not having a daignosis, It was hard to do for more than a day or two. Perhaps you can just try it... be sure not to cut out gluten entirely, and as you get closer to the test dates, make sure you eat it... If you stop eating gluten and you celiac, your body stops creating the antibody and then you get a negitive test!

Most impoertant thing is to go to the doctor with information, facts, and demand the tests. Many doctors don't know much , or know wrong stuff. Some will say "I don't think it sounds like celiac" You need to demand it. Also if all tests come back negitive, dont' get discouraged, try the gluten-free diet for a few monthes and see if it helps. Many people on here have neg test results, but still see great dietary response.

Good Luck and Welcome

Thank you! Part of me is really dreading finding out if this is what I am dealing with. I like food and to be honest, I am a bit concerned about the possibility of having to radically change how I eat. However, I need to find out if it is for obvious reasons. My grandmother died from stomach cancer and my sister has had stomach problems they couldn't figure out. She couldn't burp from the time she was born until she gave birth to her sons. She went through quite a bit of testing and they ended up telling her to take Malox--they didn't know what was wrong.

newbieva Rookie
I agree they do sound like Celiac. My blood tests came back in about 3 days! Definetly stay on gluten until your tests and possible until after your biopsy. We had no idea what I had and scheduled a endoscopy and colonscopy before my blood tests even came back. So that is also a possibilty you could ask your Dr about, that was if your blood tests come back negative....you can still have things checked out!!!

Good luck!

Three days is very reasonable! I will definately stay on Gluten until the test! Thank you for responding to my questions! I really appreciate it! I am not feeling as lost as I was last night.

newbieva Rookie
Your GI doctor should schedule you for a blood test (celiac Panel). If your results are positive for ttg,ema antibodies then she might schedule you for an upper endoscopy, but not a colonoscopy. Ask your gi doctor for the celiac blood test. It should take a few days to get your results. In the mean time dont go gluten free as it will affect the accuracy of the test. Your symptoms sound like celiac by the way.

Thank you!!!!

Do they put you out for an endoscopy?

happygirl Collaborator

They generally give you heavy sedation, which to you, means you'll be out. You probably won't remember anything. Its safer, less side effects, and lasts a shorter time, since the endoscopy/biopsy is usually pretty quick.

Only under certain circumstances do they use general anasthesia (sp.).

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 Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,367
    • Most Online (within 30 mins)
      7,748

    Pauline14
    Newest Member
    Pauline14
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • 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

    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.