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 Diagnosis--symptoms Worsening!


girlywhirly

Recommended Posts

girlywhirly Newbie

I have recently received a diagnosis of celiac disease from a blood test. My dr was unable to get a biopsy due to the inflammation of my small intenstine, however, they are pretty confident that they have reached an answer. After my release from the hospital I went right out and de-glutened my kitchen and felt tremendous for the first 3 days! However over the past 2 weeks I've been surprised to find my symptoms fluctuating and sometimes finding myself worse than before they diagnosed me!

I can't wear anything that puts any pressure on my abdomen or it triggers a reaction as if I've eaten gluten. Also, I'm experiencing increasing and worsening nausea that is only controlled by Zofran. I don't know if this is part of the healing process or not, but I'm so careful about anything that I ingest or wear I wonder if I'm poisening myself somehow or if there is something else I should be doing?

What can I do??


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



Celiac.com Sponsor (A8-M):



confused Community Regular
I have recently received a diagnosis of celiac disease from a blood test. My dr was unable to get a biopsy due to the inflammation of my small intenstine, however, they are pretty confident that they have reached an answer. After my release from the hospital I went right out and de-glutened my kitchen and felt tremendous for the first 3 days! However over the past 2 weeks I've been surprised to find my symptoms fluctuating and sometimes finding myself worse than before they diagnosed me!

I can't wear anything that puts any pressure on my abdomen or it triggers a reaction as if I've eaten gluten. Also, I'm experiencing increasing and worsening nausea that is only controlled by Zofran. I don't know if this is part of the healing process or not, but I'm so careful about anything that I ingest or wear I wonder if I'm poisening myself somehow or if there is something else I should be doing?

What can I do??

I was the same way, I felt awesome after the first few days, then i started to feel terrible again. Then I found out i was casein intolerant, which has been very hard for me to deal with. I still have good and bad days. I hear it takes about 6 months to an yr to actually feel great.

I am actually in the process of contacting all of the product companies to see if all the stuff i use is gluten free. I feel like I am still getting glutened from something, but i have not been able to figure it out yet.

Maybe give up casein for a while and see if u feel better. Most celiacs cant tolerate dairy while they are healing.

paula

girlywhirly Newbie

Thank you! I will try to eliminate casien and see if it helps...I'm so miserable it's worth trying anything!

Nancym Enthusiast

A lot of people adopt a very simple, very restrictive diet at first because the healing process can be pretty rough. You might want to google on SCD and see if that might help you out, but leave out the dairy products at least at first.

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. - glucel replied to glucel's topic in Super Sensitive People
      18

      iron digestibility

    2. - knitty kitty replied to glucel's topic in Super Sensitive People
      18

      iron digestibility

    3. - glucel replied to glucel's topic in Super Sensitive People
      18

      iron digestibility

    4. - 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

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

    • Total Members
      134,004
    • Most Online (within 30 mins)
      10,442

    Bothy
    Newest Member
    Bothy
    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
      I ate sprouted buckwheat and hard boiled egg last night instead of cereal and got extra 1/2 hour sleep but more importantly feel better this morning. I do sleep in cycles that seems to rotate btwn 3 and 6 hrs but I will monitor next time I make a pot. Bwheat is a complete protein with good amounts of thiamin, magnesium, fiber and iron. High carb but much lower glycemic and much healthier than refined flour cereal.
    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      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
      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
      @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/
×
×
  • Create New...