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

New Here With A Couple Of Questions


erniehart

Recommended Posts

erniehart Newbie

Hello all

I have a couple of questions, first I guess i should give some background info. About 4 or 5 years ago I realized I had pretty much chronic diharrea until about a year ago I didnt really think anything of it. I then saw how it was cutting into my life. I had very frequent trips to the bathroom couldnt go out to dinner without getting home and running to the bathroom. I then went to my family doc in april of 2012 and had blood work done that didnt reveal anything. my family doc sent me to a GI doc who did a colonoscopy that didnt show anything. I didnt like the GI doc so I stopped going to him and just left it alone til the summer of this year when I started getting real bad stomach pains. went to the ER and a cat scan showed that the lymphs nodes in my gut were swollen but they didnt know why. I also had a little blood in my stool. After the ER visit I went to my family doc again who sent me for a celiac blood test and to see another GI doc. my family doc read the results and said that they were negative for celiac. the ttg iga test was 1 and the iga total test was 93. I then saw my new GI doc who seems to suspect IBS but is performing an endoscopy on me tomorrow.

 

I have been noticing more that anytime I eat breads and wheat containing foods I get heartburn and also have issues swallowing. I also eat some things that seem to come out all chewed up but not digested.  except for the time my lymph nodes swelled I dont typically have any pain in my gut. I have a varying level of diharrea constantly though.

 

That brings me to my questions. does everybody have painful symptoms. everytime I read someones story about celiac that say they hurt so bad which makes me depressed because I think I have celiac but hear other people with so much pain and whatnot then I think there is no way I could because I dont hurt.

 

Also would you think that my ttg test is even valid because of how low the total IGA is. The range for total IGA is 81 - 480ish, with the range being so wide and my level on the low end of that is the ttg test useful.

 

I guess my last question is is IBS really a medical condition or is it just doctors way of saying we dont know whats wrong with you.


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



Celiac.com Sponsor (A8-M):



w8in4dave Community Regular

You do not have to have pain to have Celiac. Alot of people don't even have the big "D" you don't even have to have symptoms to have Celiac. Another thing is alot of people test negative a few times before they test positive.  It sure sound familiar to me tho. Altho I did have the pain. Besure to read the newbie thread. It gives alot of info. I don't know about the numbers. Someone eles will chime in. I know I was Dx'd with IBS a few years ago. hmmm seems like all that went away with Gluten Free diet!! hahaha .. Wish you the best of luck!! :) 

powerofpositivethinking Community Regular

can't post much because of time, but since you're getting the endoscopy tomorrow...please, please have them take at least 6-8 samples from your small intestines.  For a lot of people, damage can only be seen through biopsy and not the naked eye.  Does anyone have any links to more detailed write-ups about biopsy procedures?  If you had lower total iga, it would be a good idea to get DGP igg and TTG igg run too.  Remember you must currently be consuming gluten for both the biopsy and blood tests.  

 

Good luck tomorrow!

 

PS- a lot of people around here say IBS stands for I Be Stumped.  Makes me laugh every time, and yes, it is just a catch all term because the doctor hasn't discovered the true problem.

 

 

 

 

I guess my last question is is IBS really a medical condition or is it just doctors way of saying we dont know whats wrong with you.

SkyBlue4 Apprentice

PS- a lot of people around here say IBS stands for I Be Stumped.  Makes me laugh every time, and yes, it is just a catch all term because the doctor hasn't discovered the true problem.

 

So true!  :D

 

 

That brings me to my questions. does everybody have painful symptoms. 

 

No.

 

Good luck with your test today!

emilykay405 Rookie

I didn't even think my bathroom habits were abnormal until I started having more problems earlier this year. I just assumed everyone went to the bathroom an hour after eating. Once I started having stomach cramps and issues with blood again, I decided it was time to get it checked out. I've already had a c-scope (which found a pre-cancerous polyp) and endoscope (found Hiatial Hernia but didn't go into my small intestine and no biopsy done). When I realized that the GI didn't do any Celiac testing, I asked my primary and it came back positive. So I'll be back at the GI this week to hopefully get an endo scheduled.

 

That was longer than I expected...but you mentioned heart burn and swallowing. Anytime I eat any gluten I have the same problems. My GERD flares, nausea (It's always fun dry heaving while walking through the office), and it feels like I have food in my esophagus. As far as pain, until I started focusing more on it I didn't realize how much pain I'm in after I eat gluten. It's entirely possible that you have other damage caused by the heartburn, too. That was another one of those things I didn't realize was a big deal.

 

Another red flag with the swallowing...does it feel like your throat is closing up when you eat gluten? That could be an allergy, possibly life threatening. I don't want to scare you, but anaphylaxis is dangerous. Check out this website Open Original Shared Link and if that fits your symptoms while consuming gluten (or anything) find an allergist immediately or talk to your doctor about getting an epipen.

erniehart Newbie

alright just got back from the endoscopy. i guess there was no obvious signs of celiac so I guess I need to wait for the biopsy results. I know he did biopsies of the small intestine i just dont know how many. he seemed to suggest that the esophagitis was causing my problems i just dont understand how. something has to be causing esophagitis, no? he also found a small hiatal hernia.

 

thanks for the support and answering my questions. i will let you all know about the biopsy results. really hoping something come back so i can feel better.

emilykay405 Rookie

Yup..that Hiatal Hernia will cause the swallowing problems. I flipping hate them. Hopefully they will find something. =c)


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



Celiac.com Sponsor (A8-M):



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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.