Jump to content

  • 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):

New Here And Questions

msutherlin

Recommended Posts

msutherlin Newbie
msutherlin
Posted

Not sure where to start. I have had digestive problems for so long I don't remember what it was like being normal. I am in my mid 40's now. At age 23 I had thyroid cancer. I am on synthoid and always high doses. For years I blamed my "diarrhea" problems on to my synthoid. I was so thin my whole life even before the thyroid problems. The last 10 years or so I have finally put on some weight to where I look the rest of America. The last several years I was also blaming my digestive problems on a large fibroid tumor that was removed a year ago. After it's removal I had hopes that things down there would get better but they did not. This fall they got even worse.

At first I thought I had a bug. I would eat and then have to run to the bathroom. I was getting so bad I didn't want to leave the house. If we did eat out, I knew I had about 30 minutes to get home before it would hit. I was starting to wonder if I was going to have to wear some Depends! This went on for a couple months. One morning I woke up in so much pain. It was worse that child birth. I ended up at the emergency room. They did a ct scan on me, told me they could see nothing and released me. But when my doctor got the ct report, it said I had ileous and air filled small bowel loops. She said that could indicate a blockage. An appointment was made with a GI doc but of course I couldn't get in right away so have been waiting for weeks. That appointment is tomorrow. In the meantime my doc had given me a blood test for Iga and Igg. My Iga was negative but my Igg was positive so she felt a strong possiblity of celiac and told me to start on a gluten free diet.

I started on the diet for 3 days but after reading on several sites I called her back and asked for more blood test and started back eating the gluten again. Four days after eating the gluten she did an Ema and Ttg. The Ema came back negative so the lab didn't even run the Ttg. They said with the Ema being negative my insurance might not even pay fo the ttg. Right after that blood test was taken I started eating gluten free and did so for two weeks until I got the results back.

I am confused as to why they wouldn't run the ttg because I read the Ema has a high chance of false negatives. So I will be real interested in what this GI doc thinks tomorrow. Will he think there is a good enough chance I have this to even want to do a biopsy? Will he even know much about celiac? What I do know is the two weeks off of gluten I hardly had any gas or bloating. I started eating it again yesterday in case he wants to do a biopsy. But I don't know if the two weeks free I did will mess things up or if that's not enough time to really heal things. Last night after eating it all day I felt sick at my stomach all night. Tonight I am bloating again. I am so sick of this.

So that is pretty much my story. Just waiting to find out what the heck is wrong with me.

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

Celiac.com Sponsor (A8-M):


Helena Contributor
Helena
Posted

Well, it certainly sounds to me like you should be investigated for celiac disease and also that your doc isn't up on how to proceed! I sure hope you have better luck with your GI doc. I'd recommend printing off info. from authoritative sources in case you don't. The NIH has good info. on testing for celiac as does Dr. Green's centre for celiac research at Columbia.

see:

Open Original Shared Link

and Open Original Shared Link

It is entirely possible to test negative for EMA and positive for anti-tTG. These two tests are considered more reliable than the older antigliadin tests.

If everything comes back negative, you can either try the gluten free diet on your own or ask for a biopsy (which should be done before you go fluten free) depending on how important it is for you personally to have an "official diagnosis."

Some test negative for the serological markers for celiac but have a positive biopsy.

Welcome to the board :) Feel free to ask any questions---I haven't been in the 'celiac boat' for long, but there are lots of folks here who have been.

msutherlin Newbie
msutherlin
Posted
  • Author

I saw the GI doc yesterday and they are going to schedule a colonoscopy and an upper endoscopy with biopsy to see if I have celiac. So we shall see. Just the waiting and eating lots of bread now. Thank you for the information!

Helena Contributor
Helena
Posted

That's good to hear that the GI doc is pursuing this. Good luck--keep us posted.

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. Aretaeus Cappadocia
      - Aretaeus Cappadocia commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks. Not a big thing, particularly because most likely it is "true" but not yet demonstrated.
    2. glucel
      - glucel replied to glucel's topic in Super Sensitive People
      16

      iron digestibility

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

      Thanks for the thoughtful comment. You are right that the study’s main conclusion was cautious: the researchers found that inherited antibody-gene variants significantly shape the naïve B-cell receptor repertoire, including usage of some gene segments involved in celiac-related antibody responses, but they did not find strong evidence that polymorphisms in...
    4. knitty kitty
      - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      I have osteoporosis and have crushed three vertebrae. I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health). I tried Fosomax, but it tore up my insides. I prefer the supplements. I feel better and my bones feel stronger. References...
    5. knitty kitty
      - knitty kitty replied to Aileen Cregan's topic in Related Issues & Disorders
      5

      Coeliac And Cardio Vascular Disease

      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1. I am no longer on high blood pressure medication. I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine. The particular high blood pressure...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442
    michelinagiggles
    Newest Member
    michelinagiggles
    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

    • glucel
      iron digestibility

      By glucel · Posted

      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

      By knitty kitty · Posted

      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      Coeliac And Cardio Vascular Disease

      By knitty kitty · Posted

      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
    • gregoryC
      Walt Disney World Gluten Free

      By gregoryC · Posted

      Walt’s Hash
×
×
  • Create New...