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

Tabbmarie

Recommended Posts

Tabbmarie Newbie

So I havent been diagnosed. But was experiencing some pretty terrible stomach pains, And started paying attention to what i was eating. And that's when I realized that wheat and bread really do not agree with me. So it's only been a few days of trying to eat gluten free, And it's so terrible. This sounds so dumb, but I feel like life is over because i won't be able to eat some of my favorite things. And the idea of being infertile from this absolutely terrifies me. I'm only 23. And I keep googling things about celiac and making it worse for myself and freaking myself out. This sucks so bad. Even trying to be gluten free, it's just so hard. Everything has gluten. I'm just having a rough time coping with the idea of this already. Any tips on how to get better at This? And how long it takes to feel better? And if you have any amazing recipes, please do share. 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
5 hours ago, Tabbmarie said:

So I havent been diagnosed. But was experiencing some pretty terrible stomach pains, And started paying attention to what i was eating. And that's when I realized that wheat and bread really do not agree with me. So it's only been a few days of trying to eat gluten free, And it's so terrible. This sounds so dumb, but I feel like life is over because i won't be able to eat some of my favorite things. And the idea of being infertile from this absolutely terrifies me. I'm only 23. And I keep googling things about celiac and making it worse for myself and freaking myself out. This sucks so bad. Even trying to be gluten free, it's just so hard. Everything has gluten. I'm just having a rough time coping with the idea of this already. Any tips on how to get better at This? And how long it takes to feel better? And if you have any amazing recipes, please do share. 

You should keep eating gluten for now....you have to for the test. They do a blood test that requires you to be eating gluten daily for 12 weeks then a endoscope with biopsies to check for intestinal damage. Doing this now instead of later is best....after going gluten free the "Gluten Challenge" of eating it daily for 12 weeks is MUCH worse, as most have much more severe reactions
Open Original Shared Link

It is really not that bad..there is gluten free everything now days.....more of just changing brands. Many have to remove other foods at first til their intestines heal so we suggest only whole foods diet for awhile and removing dairy and oats for a month or so at first. (with damaged villi with this disease you often lack the ability to produce the enzymes to break it down, and oats are commonly contaminated and/or you might be the 10% of celiacs that react to oats also) I will show you a list of some trusted gluten free foods and brands...bit of everything.
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/
The testing is something you really might want to look into the scope will help identify any other issues you might have in the upper digestive tract.

 

Tabbmarie Newbie
3 hours ago, Ennis_TX said:

You should keep eating gluten for now....you have to for the test. They do a blood test that requires you to be eating gluten daily for 12 weeks then a endoscope with biopsies to check for intestinal damage. Doing this now instead of later is best....after going gluten free the "Gluten Challenge" of eating it daily for 12 weeks is MUCH worse, as most have much more severe reactions
Open Original Shared Link

It is really not that bad..there is gluten free everything now days.....more of just changing brands. Many have to remove other foods at first til their intestines heal so we suggest only whole foods diet for awhile and removing dairy and oats for a month or so at first. (with damaged villi with this disease you often lack the ability to produce the enzymes to break it down, and oats are commonly contaminated and/or you might be the 10% of celiacs that react to oats also) I will show you a list of some trusted gluten free foods and brands...bit of everything.
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/
The testing is something you really might want to look into the scope will help identify any other issues you might have in the upper digestive tract.

 

I 100% get that. But I can't handle the pain of eating gluten. My stomach hurts so bad and I get so nauseous the rest of the day, it hurts my back so much that it hurts to even breath if it gets bad enough. Ruins the whole rest of the day when I do. 

Ennis-TX Grand Master
35 minutes ago, Tabbmarie said:

I 100% get that. But I can't handle the pain of eating gluten. My stomach hurts so bad and I get so nauseous the rest of the day, it hurts my back so much that it hurts to even breath if it gets bad enough. Ruins the whole rest of the day when I do. 

This is your choice, though you do not need to eat much just a half slice of bread, a few crackers, or a tsp of wheat germ a day, eating at night before bed let some people sleep it off for the worst of it.

If you decided to go gluten free chocking it up to celiac or non celiac gluten sensitivity that is your choice, we have a few member who have had the same issues with the challenge. They are saying they are working on new testing methods that will forgo the poison ritual to prove it damages our intestines and is causing a immune reaction....about time right?

Anyway welcome to the forum, I am sort of the Sheldon cooper of the lot lol. I do baking and chef work for my income, but I have many other food issues as my disease was not addressed early enough and I developed complications with other disease and multiple food intolerance and allergies. So most my stuff is Keto/Paleo base and many vegetarian options. I do have recipes for grain free baked goods etc. But best you be off breads til you forget what gluten taste like before trying them or any gluten-free bread for that matter.
Here is the newbie 101 thread to review if your going to be assuming you have celiac.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

mom2boyz Apprentice

I'm a new to gluten free also, it helps that my husband was already grain free, so we didn't have much of an adjustment other than no cookies or dining out for me anymore.  You're going to have to change the way you eat.  Look up the no sugar no grains diet, or the paleo diet, start trying new recipes, eating new foods, and stay away from processed food substitutes, it's really tough the first couple of weeks, but you'll find that after a few months you'll like veggies a lot more, and foods that weren't sweet before will be much sweeter later. 

It's probably going to sound gross, but my favorite easy to make, feel good comfort food is sardines mashed with avacado on rice cakes.  Roasts in the slow cooker are really good and easy to make too.

I suspect I have had celiac (not confirmed, and until there is a gluten free test it will stay that way) since I was in my mid teens, and I had 2 kids in my 20s but was infertile when trying for #3 at about 30, but that was about the time my digestive system refused to digest anything at all and I was also super skinny size 0, which can't be good for a baby anyway.  So, hopefully, if you keep up with the diet, you'll have more time to have kids than I did.

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. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      335

      Terrible Neurological Symptoms

    2. - knitty kitty replied to Ben Cohen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      How much gluten do I need to eat prior to testing?

    3. - knitty kitty replied to Lotte18's topic in Publications & Publicity
      11

      Prospective CRISPR research

    4. - Lotte18 replied to Lotte18's topic in Publications & Publicity
      11

      Prospective CRISPR research

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

    • Total Members
      133,758
    • Most Online (within 30 mins)
      7,748

    luckyhoneybee
    Newest Member
    luckyhoneybee
    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

    • HectorConvector
      I think it's just part of the natural water retention/release cycle that happens, just in my case the retention part hurts my hyper-sensitive nerves. So its just another thing to add to the huge list of "irritants" rather than the cause. I tend to underhydrate a bit by habit. I don't have any health conditions according to any testing other than celiac disease, at least nothing serious (I have Gilbert syndrome but it's harmless apparently).  With central sensitization, what should be normal changes in vascular contraction etc... (so including with exercise, and temp changes, changes in blood viscosity etc...) triggers pain in me, generated in the brain, which it doesn't in "normal" people.
    • knitty kitty
      Can you tell us about your experiments?  Are you consuming dairy, too?  
    • knitty kitty
      Human Leukocyte Antigens are coded for in our DNA.  They act like street signs on cells so the body knows that they are "Self".   Tissue typing in organ transplantation looks for donors with "Self" street signs similar to the recipient's in order to prevent rejection of the transplanted organ.   The HLA DQ genes code for immune cells.  Some immune cells are encoded to recognize certain protein strings when that protein string attaches to the receptor on its cell membrane.  Originally, these protein strings were found in the cell walls of harmful viruses and bacteria.   I like to think of these immune cells as patrolling police with orders to "be on the lookout for armed and dangerous suspects matching your cell membrane receptor description".   However, segments of these dangerous protein strings are also found in the carbohydrate storage protein Gluten.  During digestion, Gluten segments bind with Tissue Transglutaminase, an enzyme that builds and repairs structural components of our "Self" cell membranes in our bodies.   This Gluten-Transglutenaminase globule fits into the receptors on the patrolling police immune cells and sets off an alarm.  Mother immune cells begin producing antibodies (anti-tissue Transglutaminase antibodies ie, tTg antibodies) against the Transglutaminase-Gluten globule.   Unfortunately, we have tissue Transglutaminase in the structure of all our cell membranes.  The antibodies attack healthy cells in our digestive tract, damaging them, causing them to signal to nearby cells "I'm sick, get away from me so you don't catch it!".  Spaces appear between cells.  The tight junction between cells is lost.  Gastrointestinal permeability is compromised.  This allows for other Transglutaminase-gluten globules to leave the intestinal tract, enter the blood stream, and travel to other organs and cause problems there.  All the while, more police immune cells are alerted along the way with more mother cells producing more antibodies.  Sort of ends up looking like a "Smokey and the Bandit" movie in my mind, but with more than one "Bandit" driving around.   So, people with a genetic predisposition (they have HLA DQ genes known to code for Celiac Disease) can go for years without developing Celiac Disease.  There needs to be a trigger that turns the genes on.  Triggers can be physical stressors like having an infection (like the flu or the common cold), or an injury, or an emotional stressor (like losing a loved one or abuse).   There's some scientific proof that Thiamine insufficiency triggers autoimmune diseases.  During times of illness and emotional stress, the body requires additional Thiamine to provide the energy for the increased metabolic demand that comes with physical and emotional trauma or stresses.  Athletes have higher metabolic demands.   People who work outside in sunshine have higher metabolic demands, too.  This is because light (sunlight or indoor lighting) breaks thiamine down, denatures it, so that it cannot be used.  People who drink alcohol need more thiamine because alcohol will cleave thiamine in half making it useless.  People who eat a diet high in carbohydrates have a higher metabolic demand for thiamine and the other B vitamins needed to turn food into energy.   Mitochondria are involved in producing energy, ATP, from Thiamine Vitamin B 1.  When there is a thiamine deficiency inside a cell, the mitochondria can no longer make energy ATP.  This is relayed to the DNA.  On the DNA, a switch is thrown to signal there's no thiamine, and another switch is turned on.  This is the switch that turns on the DQ autoimmune genes coded for in that DNA.  Whatever autoimmune genes are on your DNA start turning on.  Thiamine Vitamin B 1 is needed to turn food into energy for the body along with the seven other B vitamins and minerals. Thiamine and magnesium make life sustaining enzymes.  Thiamine does stuff by itself, too, like regulate the immune response, and prevent mast cells from degranulating histamine. Thiamine influences which bacteria grow in our microbiome.  Thiamine deficiency allows Small Intestinal Bacterial Overgrowth (SIBO).  Immune responses and inflammatory cytokines are higher in thiamine deficiency.   Thiamine cannot be stored long (18 days).  Thiamine insufficiency or deficiency can occur within three days if stores are depleted due to high metabolic demand and depleted stored thiamine.    The majority of people with Diabetes have been shown to be deficient in Thiamine.  People with obesity who plan gastric bypass surgery have been found to have insufficient thiamine.  People Hashimoto's (autoimmune thyroid problems) have been found to improve with thiamine supplementation.  People with autoimmune arthritis have been shown to improve with thiamine supplementation.  People with MS have been shown to improve with thiamine supplementation.    Blood tests are not reliable measures of thiamine level.  The brain controls the amount of thiamine in the blood stream.  The brain will order tissues to release their stored thiamine into the blood stream in order to keep a constant supply going to the brain, heart, and lungs.  So, there can be organs with depleted thiamine stores, while blood levels stay constant.  This results in a localized deficiency within the organ or tissue.   The best way to tell if there's a deficiency is to take thiamine hydrochloride for several weeks and look for health improvements.  Higher amounts of thiamine are needed to correct thiamine insufficiency or deficiency.  This helps replenish thiamine stores inside cells and tissues as well as meet increased metabolic demands.   Processed foods containing wheat are required to have vitamins added to them to replace the ones lost with the removal of the germ and bran.  Food manufacturers use Thiamine Mononitrate, a cheap, shelf-stable form of thiamine that is not easily absorbed nor utilized by the body.   A diet high in ultra processed foods, high in sugar and simple carbohydrates requires additional thiamine to turn the carbs into energy for the body.  Excess carbohydrates and low thiamine encourages SIBO.  For every 1000 kcal of carbohydrates the body needs an additional 500 mg of Thiamine.  The RDA is based on the minimum amount required to prevent disease.  This was set in the 1940's, when people ate very differently.   Early symptoms of thiamine insufficiency include depression, anxiety, impulsivity, and changes in mood and cognitive function, digestive problems, nausea, abdominal pain, diarrhea, constipation, fatigue, muscle cramps, high blood pressure, tachycardia, blurry vision, insomnia or other sleep disturbances.  All so easily overlooked or attributed to daily stresses.    
    • Lotte18
      Got it.  Thanks Aretaeus.  
    • xxnonamexx
      As I have been mapping what I eat etc to eliminate what gluten-free foods give gas/bloating and I have eliminated protein bars with sugar. I have switched to RX bars that don't have any added alcohol sugars and what a difference it has made. Its hard to find good protein bar w/o added sugars but this has been the best I have found that doesn't cost so much.
×
×
  • 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.