Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

You Probably Get A Lot Of These, But I'm Lost


Future-MrsCornell

Recommended Posts

Future-MrsCornell Newbie

I know you all probably get a lot of the newbies wondering if their symptoms are indicators of Celiac's Disease, and I'm sorry I'm adding yet another, but I've hit a brick wall here.

I am 24 years old and have had digestive issues for as long as I can remember. I was diagnosed as having IBS when I was 4 due to malabsorption and another doctor when I was 6 recommended my avoiding certain carbohydrates as well as drinking Ensure (wretched stuff, that is).

I seemed to get my diet in order and was actually putting on weight, height and muscle mass once I was in high school. I went from being 4 feet 5 inches and 85 pounds my sophomore year to 5 feet 6 inches and 125 pounds by my senior year. All seemed to be well until I was in the military. My diet changed. I started feeling fatigue, my joints and bones ached and my weight became a roller coaster again. I thought it was just the rigorous physical routine I had, but my problems didn't change once I left the Army. They seemed to get worse.

I have had sever lower abdominal pain for over a year now. It is constant at a 7 (scale from 1-10) and can escalate to a 9, robbing me of sleep (Which may explain the fatigue). My joints still ache and I feel the stress fracture pain that I was assured would heal once I returned to civilian life. I do have muscle aches, but usually write those off being that I live in Arizona and can possibly be dehydrated. My pinkie and ring nails are detaching from the nail bed, I have pin point blisters on the knuckles and between my fingers. Most fun of all is the constipation. (I know how you love to study stool) WHEN I DO void, there is a white sheeth like substance that is currently blood red. Fun Fun.

The worst symptom of all is my mood. I work in a K-8th school and love my job. I've always loved working with kids, but as of late I am considering a field change. I get tired and irritable and fear that it interferes with the occupation I adore so much.

This is so stupid. I am crying to write this. I do that so much now. I used to be so strong, but this pain and irritability overwhelms me. If anyone knows anything that could help, I would appreciate it very much.


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



Celiac.com Sponsor (A8-M):



key Contributor

It definitely sounds like you could have celiac disease. You have alot of symptoms. I would try and find a good GI doctor that is up on the latest research with celiac. It says that constipation is definitely a symptom in some people. In the past they thought you had to have severe diarhea. I am sorry you have suffered your whole life so much. I hope you get some relief soon. If a doctor won't diagnose you, then you can simply go gluten free on your own. It would definitely benefit you to have the blood work and biopsy before going gluten free. There are many of us here that didn't have conclusive results. I had borderline blood tests after two months of being gluten free. I chose not to have the biopsy. My son that is 2 also has celiac.

Take care and welcome to this board. If you stick around you will learn alot.

Monica

Guest nini

I sent you an e-mail. Welcome to the board and good luck!

Future-MrsCornell Newbie

Thank you both very much. I am contacting my doctor tomorrow to request the referral. He's a pretty good guy and said he would write one up for me even with just a phone call. My fiance said he would eat his @** hole if I was diagnosed with Celiac's. I invision a gluten-free cake in the shape of a butt with strategically placed brown frosting in the future. LOL I told him later that that hurt. I know I seem to be grasping at straws, but I just want to know why I'm hurting. If I know the why, then I can know the remedy. He apologized cuz he's nice like that.

nettiebeads Apprentice
Thank you both very much. I am contacting my doctor tomorrow to request the referral. He's a pretty good guy and said he would write one up for me even with just a phone call. My fiance said he would eat his @** hole if I was diagnosed with Celiac's. I invision a gluten-free cake in the shape of a butt with strategically placed brown frosting in the future. LOL I told him later that that hurt. I know I seem to be grasping at straws, but I just want to know why I'm hurting. If I know the why, then I can know the remedy. He apologized cuz he's nice like that.

Oh yeah, celiac is quite an education for those who have it and those who live with them. My husband is great like that too. Loves figuring out how to make regular foods gluten free for me (he's an ex-sous chef)

Anyhow, see the dr, get the celiac blood panel done, and the biopsy if ordered, then go gluten-free right away and see what happens. You might want to go dairy free right now as that won't skew the results and if it is celiac, the damage done to the villi will keep you from digesting dairy until they heal. Please keep us posted as to your progress. There's lots and lots of good info and experience on this board.

Annette

Guinevere Newbie

sounds exactly like celiac, you've come to the right place. keep browsing through this site and you'll get lots of info. you can also check out another site that i have found to be very helpful:

Open Original Shared Link

tarnalberry Community Regular

you absolutely need to follow up with a doctor, particularly with blood on the stool. it could be celiac, though it could be a number of other things. I would encourage you to insist upon the celiac panel during testing, due to the malabsorption and IBS diagnosis early in life and difficulty maintaining weight, but do pursue a full workup.


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



Celiac.com Sponsor (A8-M):



Future-MrsCornell Newbie

Thank you! I have an appointment with a gastroenterologist next week. He is the gastroenterologist that wanted to discuss Fibromyalgia when I did not respond well to the IBS medication Zelnorm, but I'm hoping if I go in there determined to get this fixed and not be a push over when he suggests that it's the "vapors" then I can finally get the treatment needed. Thanks again!

Future-MrsCornell Newbie

Thank you all! I have an appointment with a gastroenterologist next week. He is the gastroenterologist that wanted to discuss Fibromyalgia when I did not respond well to the IBS medication Zelnorm, but I'm hoping if I go in there determined to get this fixed and not be a push over when he suggests that it's the "vapors" then I can finally get the treatment needed. Thanks again!

Ursa Major Collaborator

In case you wonder why the initial post is doubled now, I merged the first post with it's duplicate. Future Mrs. McCornell, when you don't see a topic you started right away, that is because a moderator has to approve and 'pin' it to appear at the front of the appropriate forum first. If you don't see it immediately, please don't just post it a second time, be patient, somebody will see it soon and pin it. You can always find it in 'view new posts', when you click on it, even before it's pinned.

You got good advice here, and I am glad you're seeing a gastroenterologist. You need to insist that he test you for celiac disease as well as everything else. When I was so ill last summer, my doctor had me tested for everything under the sun (everything came back negative), except for celiac disease, because 'I was gaining weight, instead of losing it', so my doctor thought that celiac disease wasn't a possibility. Too bad that she was wrong. We need to be our own advocates here!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,698
    • Most Online (within 30 mins)
      7,748

    HBVB
    Newest Member
    HBVB
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Sounds like your doctor is not very knowledgeable about celiac disease and may not be supportive of your efforts to run this down. Unfortunately, there is still a lot of ignorance in the medical community with regard to celiac disease. He/she may not even know what tests to run. Those of us who have been on the celiac journey for sometime have come to realize we need to be our own advocate and need to be appropriately assertive in order to get proper testing done. So, when the day comes for the appointment, here are some recommended tests you should discuss with your doctor that are celiac specific: At the bare minimum, the doctor should or: 1. total IGA. This test checks for IGA deficiency. If you are IGA deficient, then next test, #2 below, will give falsely low scores and may produce a false negative. 2. tTG-IGA This is the centerpiece of celiac disease testing and is the most popular test run by doctors. If  the doc is willing, ask for these in addition: 3. DGP-IGA 4. DGP-IGG 5. tTG-IGG These five tests would constitute a fairly complete celiac panel and give fuller picture. What one test may miss another may catch. Here is an article giving an overview of celiac disease blood antibody testing, the relative sensitivities and accuracies of each test. The one test mentioned in this article I did not include in my list is the EMA which is not used often anymore. It is expensive to run and has largely been replaced by the tTG-IGA. One other thing to be aware of and that is if there are positives in the antibody testing, you likely would get a referral to a GI doc who may want to do an endoscopy with biopsy of the small bowel lining to confirm the antibody testing results. You would needs to still be consuming gluten for this one as well.
    • trents
      I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed.
    • cameo674
      Because of my brother’s supplement regime and my and my husband’s known gene mutations, all of the kids (26,28,30 - I should not call then kids) take PureTherapro RX Methyl Multi without iron, the MagTech magnesium supplement with 3 forms of magnesium, and D3.  I am still trying to find a Fish Oil supplement for them that comes in smaller size capsules.  I take the Metagenics lemon flavored Fish Oil Epa Dha 1000mg gels and the kids call them horse pills.  They want something 1/2 that size bur don’t have a fishy taste. 
    • growlinhard1
      Thank you for the response. I didn't think of  the things you presented but they make a ton of good sense. I'm in the USA so no stipend for a formal dx. With the added cost of gluten free food, I wish there was some program to help. I bought a loaf of gluten free bread that cost $7.99 and my usual multi grain is $2.57!  I REALLY felt the doctors taking you more seriously comment. That is a huge issue. I just had fairly extensive blood work done, none of which was testing for celiac, and everything came back normal. I felt completely dismissed by my doctor even though my symptoms remained unchanged. As a matter of fact, Celiac disease wasn't even on my regular doctors radar. I think after studying the symptoms and comparing them with my symptoms that should have been one of his top differential diagnoses. I will follow your advice and wait until after the bx to begin eating gluten free. I'm fairly certain of the diagnosis at this point because 4 days of no gluten has made a difference. I feel somewhat stronger, nowhere near as anxious or irritable, urinating every 2 hours instead of every 30 minutes to an hour and much less nausea.  If anybody has any other words of wisdom, advice, really anything, please let me know..I'm kind of alone in this.
    • knitty kitty
      Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system. Read here... Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease. And some of us react to corn (maize) as well. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients https://pubmed.ncbi.nlm.nih.gov/24152750/   P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  
×
×
  • Create New...