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
erniehart
Posted

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
w8in4dave
Posted

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
powerofpositivethinking
Posted

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
SkyBlue4
Posted

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
emilykay405
Posted

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
erniehart
Posted
  • Author

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
emilykay405
Posted

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.

Go to topic listing

  • 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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,878
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.