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

How Do You Emotionally Deal With Setbacks?

icelandgirl

Recommended Posts

kareng Grand Master
kareng
Posted

This isn't meant to be discouraging.  Its just a sort of explanation/example that might help you accept and find what works for you.

 

Even after more than 4 years, I find that I have a "delicate" digestive system. If I eat differently from "normal" for a period of time, I have some issues.  For instance, when I go on a trip, I might eat more sandwiches because they are easy to take along.  But I don't normally eat much bread.   A sandwich once in a while is fine.  But one everyday for 3 days in a row.... and my system isn't right.  I don't think that means the gluten-free bread has gluten,  its just something in bread?  xantham gum in larger quantities? A grain in the bread? I am not eating a salad?  Who knows what  the problem is.   I just learn how I have to eat when I travel - Add a lot of fresh spinach to the sandwiches, no PB, Cold cuts and cheese or cream cheese is better.  Alternate with other foods - hummus and crackers and fruit one day, Go Picnic pack another, then back to sandwich.

 

I bought some yummy mini cupcakes at Xmas to serve the extended family.  Had some left-overs.  I think I ate too many in 2 days.  Too much fat? sugar? some other ingredient or a combo of ingredients?  I don't assume it is gluten.  This happens if I make cupcakes and eat too many.

 

 

My point is, it takes a while to heal.  It takes a while to figure out what the right balance of foods are for you..I have had to change the "balance" as I healed.  What worked best at 6 months wasn't the same as at 2 years.  for example - I couldn't have a lot of raw greens (salad) in the beginning.  Now I find I need them to maintain smooth flow of food thru the system.

 

Having a hard time typing as GRacie the cat wants me to get her some ham.  I try to explain that too much ham will upset her tummy, but she doesn't listen.  She likes catnip but ham is what drives her wild!  She knows there is an open pack in the fridge.

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

Celiac.com Sponsor (A8-M):


  • Replies 102
  • Created
  • Last Reply
C-Girl Contributor
C-Girl
Posted

Thanks kareng. I had been eating greens, trying to stick to whole, unprocessed foods. I cook them, but I guess I just can't have them at all yet, which stinks because I love greens. Back to boiled rice and eggs for another week until things settle down.

On another note, I know when things are about to get ugly when I suddenly gain 3-4 lbs. it's first bloating, then urgency, then the big D a week later. Then I stop eating, then I eat only rice and then it gets better. Then I start eating normal foods and a month later I'm back to step 1. It has been going like this since day 1 - I can almost plan my schedule around the episodes. Every other month, like clockwork. I guess I should schedule time off at the beginning of July.

icelandgirl Proficient
icelandgirl
Posted
  • Author

It's both encouraging and heartbreaking to read these stories... I think I was glutened last week by some nut butter I got a whole foods. I'd been feeling great, and got cocky and didn't read the label. Damned shared facility. It's either that or my failed attempts at baking gluten-free bread, either I can't tolerate yeast or the flours from nuts.com were contaminated... Sigh. It's never fun visiting friends and spending your time there on the toilet, or spending your days on the can. More than six months down and still - will it ever end? Each time I think I have it solved, another "blip". I feel like I'm living I morse code with all these damned blips.

I hear you.  The blips send me into detective mode, analyzing everything I've consumed in the past few days.  This blip has now lasted just over a week...ugh.  The only things I noticed as something different were the almond flour and chocolate chips.  But, I don't know that they glutened me.  Maybe I'm just super sensitive to anything other than potatoes.  LOL!  Anyway, I hope you start to feel better.  

icelandgirl Proficient
icelandgirl
Posted
  • Author

This isn't meant to be discouraging.  Its just a sort of explanation/example that might help you accept and find what works for you.

 

Even after more than 4 years, I find that I have a "delicate" digestive system. If I eat differently from "normal" for a period of time, I have some issues.  For instance, when I go on a trip, I might eat more sandwiches because they are easy to take along.  But I don't normally eat much bread.   A sandwich once in a while is fine.  But one everyday for 3 days in a row.... and my system isn't right.  I don't think that means the gluten-free bread has gluten,  its just something in bread?  xantham gum in larger quantities? A grain in the bread? I am not eating a salad?  Who knows what  the problem is.   I just learn how I have to eat when I travel - Add a lot of fresh spinach to the sandwiches, no PB, Cold cuts and cheese or cream cheese is better.  Alternate with other foods - hummus and crackers and fruit one day, Go Picnic pack another, then back to sandwich.

 

I bought some yummy mini cupcakes at Xmas to serve the extended family.  Had some left-overs.  I think I ate too many in 2 days.  Too much fat? sugar? some other ingredient or a combo of ingredients?  I don't assume it is gluten.  This happens if I make cupcakes and eat too many.

 

 

My point is, it takes a while to heal.  It takes a while to figure out what the right balance of foods are for you..I have had to change the "balance" as I healed.  What worked best at 6 months wasn't the same as at 2 years.  for example - I couldn't have a lot of raw greens (salad) in the beginning.  Now I find I need them to maintain smooth flow of food thru the system.

 

Having a hard time typing as GRacie the cat wants me to get her some ham.  I try to explain that too much ham will upset her tummy, but she doesn't listen.  She likes catnip but ham is what drives her wild!  She knows there is an open pack in the fridge.

Thank you for sharing that.  It's good to hear from someone who has been at this celiac thing for a while.  :)   I wonder if we will always have delicate digestive systems.  It seems like a lot of people on here have sensitivities to other things as well.  I read a study where only a third of people heal after 3 years and two-thirds after 5 years.  Can that be?  And if some people never fully heal I would think that they would continue to have issues for life?  Eek.  Where's that gelato

MilkaJ Newbie
MilkaJ
Posted

First time poster. I think I recognize a few of you from GlutenDude. Two years ago I did a work sponsored Biggest Loser challenge. It started me on a path that ended 7 months later losing 89 pounds. I kept the weight off for 2 years. I was diagnosed via blood and biopsy as Celiac in February and have osteopenia in my hips, legs and feet. I have probably put on 10 pounds and it is causing me anxiety. I live 25 minutes from the closest grocery store. Before my weight loss I would binge on potatoes and rice. Guess what two safe foods are for me. Yep. I live with my uber supportive boyfriend. But my anxiety and every day muscle and bone pain make it hard for me to feel social and be physically active. Which adds to my anxiety that he's going to get frustrated with me. Any tips on how not to be an a**hole?

notme Experienced
notme
Posted

i agree with karen - our sensitive digestive tracts are pretty fickle, sometimes!  that's why keeping a food journal is helpful.  i have to limit how much soy i have or else it gives me a problem.  not gluten, just indigestion.  i recently switched from drinking apple juice all day to drinking plain ice water.  a little tweak here and there and i can see improvement.  (i don't like the taste of plain water, but it's improved my digestion :)  ) didn't think the juice was bothering me, but, i guess the acid was too much.  you have to remember, depending on how long you've gone undiagnosed (for me it was 25 years :(  )  you are looking at a lot of damage that needs to heal !  as your gut improves, you will notice that you can eat many more things with no issue.  i just started eating salads again <took 3 years and the addition of digestive enzymes and probiotics)

 

i know, it's hard right now.  you will feel so much better, soon, and not just physically.  if you are like most of us, you have felt the out of control what-the-hell-is-wrong-with-me feeling:  now, you can take charge :)  it is the empowering side of the dx!  it feels overwhelming right now, but you can do it.  like i tell my kids:  deep breaths, one thing at a time.  i have them 'poke holes' in the wall when they hit it, and soon they are through it.  you can do it :)

 

here.  have some gelato  :)  FEEL THE POWER OF THE GELATO !!!  LOLZ!!  :D

JamieRmusic Explorer
JamieRmusic
Posted

I have a list of foods that are ok and foods that can cause problems. It was a part of leaky gut repair program from SCD that I bought... but I feel that it should be free for everyone. Some foods will be ok for some and not for others, but it was made based upon many thousand individual treatments from the SCD guys.

 

Getting healthy shouldn't cost a person anything in my opinion, and it should be a much bigger focus in this world. I'll try to get it posted by tomorrow!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I have a list of foods that are ok and foods that can cause problems. It was a part of leaky gut repair program from SCD that I bought... but I feel that it should be free for everyone. Some foods will be ok for some and not for others, but it was made based upon many thousand individual treatments from the SCD guys.

 

Getting healthy shouldn't cost a person anything in my opinion, and it should be a much bigger focus in this world. I'll try to get it posted by tomorrow!

 

 

What foods don't work for you might be fine for me.  I don't think a copyrighted list of foods can tell everyone what they can or can't eat.  

IrishHeart Veteran
IrishHeart
Posted

  I read a study where only a third of people heal after 3 years and two-thirds after 5 years.  Can that be?  And if some people never fully heal I would think that they would continue to have issues for life?  Eek.  Where's that gelato

 

Please, show that to me, because I never saw that one and I thought I had read them all  :)

icelandgirl Proficient
icelandgirl
Posted
  • Author

Please, show that to me, because I never saw that one and I thought I had read them all  :)

Sure...This is what I read. I mistyped 3 instead of 2 in the first part.

Open Original Shared Link

IrishHeart Veteran
IrishHeart
Posted

Sure...This is what I read. I mistyped 3 instead of 2 in the first part.

Open Original Shared Link

 

I am not always convinced by her articles, :mellow: but anyway...did you read the explanation WHY?

Why Don't People Recover Fully?

That's not clear, but the Mayo Clinic researchers speculated that continuous low-level Open Original Shared Link or inadvertent consumption of Open Original Shared Link could be to blame. Other factors could include genetics, age and the duration of gluten exposure before diagnosis.

 

Those are all "maybes" hon, in a limited clinical study! And it is the Mayo Clinic.The celiac centers have different data. 

Stop worrying! Let's not deal in "maybes". We were all very sick and incapacitated before our diagnoses (maybe 25+ year or more) and we are telling you...just stay the course. Do not eat gluten and be careful.  It's going to be okay.

icelandgirl Proficient
icelandgirl
Posted
  • Author

I am not always convinced by her articles, :mellow: but anyway...did you read the explanation WHY?

Why Don't People Recover Fully?

That's not clear, but the Mayo Clinic researchers speculated that continuous low-level Open Original Shared Link or inadvertent consumption of Open Original Shared Link could be to blame. Other factors could include genetics, age and the duration of gluten exposure before diagnosis.

Those are all "maybes" hon, in a limited clinical study! And it is the Mayo Clinic.The celiac centers have different data.

Stop worrying! Let's not deal in "maybes". We were all very sick and incapacitated before our diagnoses (maybe 25+ year or more) and we are telling you...just stay the course. Do not eat gluten and be careful. It's going to be okay.

I absolutely do hear you. I am not taking it to heart, but did wonder about it. Now, where's that red wine we were talking about?
IrishHeart Veteran
IrishHeart
Posted

I absolutely do hear you. I am not taking it to heart, but did wonder about it. Now, where's that red wine we were talking about?

 

 

Do not wonder or worry...read it again

 

"that continuous low-level Open Original Shared Linkor inadvertent consumption of Open Original Shared Link could be to blame. "

 

That's not going to happen to you. This is in people who do not pay attention!  ;) 

icelandgirl Proficient
icelandgirl
Posted
  • Author

Do not wonder or worry...read it again

 

"that continuous low-level Open Original Shared Linkor inadvertent consumption of Open Original Shared Link could be to blame. "

 

That's not going to happen to you. This is in people who do not pay attention!   ;) 

It won't...you're right.  I'm totally paying attention.  Thanks for reminding me.  :)

IrishHeart Veteran
IrishHeart
Posted

It won't...you're right.  I'm totally paying attention.  Thanks for reminding me.  :)

no problem ! that's what celiac buds are for.  ^_^..keeping each other sane and calm. (and keeping you company while  drinking wine) 

Jmg Mentor
Jmg
Posted

It is hard to believe it in the beginning of your Celiac life that you really can gain your health back and be comfortable and feel well but it does require time.  Of course, I do have other autoimmune problems from going so long without a diagnosis but I manage them well and do not take much medication. I am a firm believer in eating healthy, not cheating, exercise and don't forget to laugh often.  I do not let the medical world control or have too much input in what I do because I don't always believe they do the right things.  They tend to scare people. Yeah, so what, I have 4 AI diseases. I will never let that stop me or slow me down and just think positive. Even my doctor admits I am doing well and do a good job of managing things and really, with some education, anyone can achieve the same. Learn all you can, over time,so mistakes can be minimized.  It is not inevitable that you will feel badly more often than you feel good with Celiac.  Maybe in the beginning while you heal but not down the road.  Plus, after being gluten-free for so long, I am totally comfortable with this life and do not pine about foods I cannot eat. It is second nature to me and I would never go back.  You will feel this way too, I promise.  Go forward, not backward. If you are missing something food-wise, let us know because usually there is a good gluten-free version that someone will know about.  And, lastly, drink more tea.....I find that tea is so settling to the stomach.  The British have that right!  :)

 

This wasn't directed at me but nonetheless I found it great to read, thank you for writing it. 

IrishHeart Veteran
IrishHeart
Posted

First time poster. I think I recognize a few of you from GlutenDude. Two years ago I did a work sponsored Biggest Loser challenge. It started me on a path that ended 7 months later losing 89 pounds. I kept the weight off for 2 years. I was diagnosed via blood and biopsy as Celiac in February and have osteopenia in my hips, legs and feet. I have probably put on 10 pounds and it is causing me anxiety. I live 25 minutes from the closest grocery store. Before my weight loss I would binge on potatoes and rice. Guess what two safe foods are for me. Yep. I live with my uber supportive boyfriend. But my anxiety and every day muscle and bone pain make it hard for me to feel social and be physically active. Which adds to my anxiety that he's going to get frustrated with me. Any tips on how not to be an a**hole?

 

 

You're still healing. You've got to give yourself a break about that.  Stop thinking about "what ifs" ok?  ;)

 

Do not be "anxious" about gaining some weight back, okay. This is normal when your body starts absorbing nutrients again.

 

I can relate entirely to the muscles and bone pain and osteopenia, but the irony of managing all that lies in keeping mobile.

 

can you walk in a pool somewhere? get therapeutic massage? some physical therapy? sit in a bath with epsom salts?

walk just 10 minutes in the morning, then try 10 more in the afternoon? get up and walk around every hour. Stretch slowly.

Keep moving.  sadly, to get out of pain, we have to create some initial pain because the muscles and joints really need to be used. 

 

The good news is osteopenia can be arrested and reversed by doing weight-bearing exercises...and that means, movement.

Mine has improved in 2 years. :)

 

Take cal/mag/D.

 

It is possible you are deficient in vit D and magnesium--which also creates pain in muscles and joints.

 

brown rice is a healthy food in moderation, so are sweet potatoes, but yeah, NO bingeing. (take it from me--I gained weight too but I blame it entirely on my friend with the gluten-free bakery who kept "feeding me" because I was too thin at DX). .  

 

eat calcium-rich foods and make smoothies with kale. 

Open Original Shared Link

 

Take a deep breath. Don't chase off the BF by over-thinking all this, ok? Trust me. You're going to be okay.  ;)

Gemini Experienced
Gemini
Posted

This wasn't directed at me but nonetheless I found it great to read, thank you for writing it.

You're entirely welcome! It's always a pleasure to know I may have helped put someone in a better frame of mind. Life will always have it's challenges and the key is to find a way to deal with them and make them comfortable. It's the best way to fight back and win!

  • 2 weeks later...
icelandgirl Proficient
icelandgirl
Posted
  • Author

I'm hoping some of the amazing people that responded to this thread initially are still following it...because I need help...something...encouragement...a hug?

 

When I posted this initially I felt like I'd been glutened.  I wasn't sure what got me.  I had recently had a full month of feeling so good...and I miss it!  So, starting April 30th I started feeling bad...the big D, the brain fog, etc.  All of the usual stuff.  It lasted for about 8 days.  Had a good 3-4 days...over Mother's Day too, which was great.  Then I started my period which is always a nightmare and comes with it's own set of big D, headaches, etc.  But that's been over for 6 days and I'm still having big D a few times a day...not 20 like initially.  I still have some brain fog, some headaches, am tired.  

 

I don't get it!  I'm completely gluten free.  If I'm getting gluten somewhere I don't know where.  I realize I may have a very sensitive system.  Starting on Monday I went to eating only chicken, potatoes, sweet potatoes, rice, bananas and berries.  I'm drinking water, coconut water and lots of tea.  I don't feel as bad as before I got diagnosed, but I can't believe this is going on in some way or another for over 3 weeks.

 

I'm scared that there's something else wrong with me and I don't want that.  Between mid-December and mid-January I was diagnosed with gallbladder polyps, uterine polyps, h. Pylori and celiac.  I just want to feel good and healthy like I did until April 30th.

 

So...any thoughts?  Is it because I'm only 4 months in and still healing?  Do I need to do something else?  Different?  More?  

 

Thanks for any positive thoughts...I really do appreciate them.   :(

 

GottaSki Mentor
GottaSki
Posted

I'm hoping some of the amazing people that responded to this thread initially are still following it...because I need help...something...encouragement...a hug?

 

When I posted this initially I felt like I'd been glutened.  I wasn't sure what got me.  I had recently had a full month of feeling so good...and I miss it!  So, starting April 30th I started feeling bad...the big D, the brain fog, etc.  All of the usual stuff.  It lasted for about 8 days.  Had a good 3-4 days...over Mother's Day too, which was great.  Then I started my period which is always a nightmare and comes with it's own set of big D, headaches, etc.  But that's been over for 6 days and I'm still having big D a few times a day...not 20 like initially.  I still have some brain fog, some headaches, am tired.  

 

I don't get it!  I'm completely gluten free.  If I'm getting gluten somewhere I don't know where.  I realize I may have a very sensitive system.  Starting on Monday I went to eating only chicken, potatoes, sweet potatoes, rice, bananas and berries.  I'm drinking water, coconut water and lots of tea.  I don't feel as bad as before I got diagnosed, but I can't believe this is going on in some way or another for over 3 weeks.

 

I'm scared that there's something else wrong with me and I don't want that.  Between mid-December and mid-January I was diagnosed with gallbladder polyps, uterine polyps, h. Pylori and celiac.  I just want to feel good and healthy like I did until April 30th.

 

So...any thoughts?  Is it because I'm only 4 months in and still healing?  Do I need to do something else?  Different?  More?  

 

Thanks for any positive thoughts...I really do appreciate them.   :(

 

First and foremost....here you go

 

one huge --- HUG

 

ok, now...I don't think there is anything you are doing wrong...the key is it simply takes time.

 

If you really are only eating just those items...try this:

 

Chicken, sweet potato fries or mashed and steamed or oven roasted veggie (i like broccoli, asparagus or carrots - doesn't really matter which veggies, just add them)

 

your story is common here...for whatever reason when many of us remove gluten we feel pretty darn good for the first months -- for me it was the best I felt digestively speaking my entire life....but my other symptoms worsened and before long my digestive system was in real trouble again.

 

Most folks feel substantially better within the six month to a year time frame, so hang in there, treat yourself with kindness and add digestive enzymes to your supplements if you have not.

 

Hang in there...or head over to the gab/chat room on this forum for some cheer!

icelandgirl Proficient
icelandgirl
Posted
  • Author

First and foremost....here you go

 

one huge --- HUG

 

ok, now...I don't think there is anything you are doing wrong...the key is it simply takes time.

 

If you really are only eating just those items...try this:

 

Chicken, sweet potato fries or mashed and steamed or oven roasted veggie (i like broccoli, asparagus or carrots - doesn't really matter which veggies, just add them)

 

your story is common here...for whatever reason when many of us remove gluten we feel pretty darn good for the first months -- for me it was the best I felt digestively speaking my entire life....but my other symptoms worsened and before long my digestive system was in real trouble again.

 

Most folks feel substantially better within the six month to a year time frame, so hang in there, treat yourself with kindness and add digestive enzymes to your supplements if you have not.

 

Hang in there...or head over to the gab/chat room on this forum for some cheer!

Lisa...Thank you so much! Your words have helped me so much. (((Hugs)))) right back. Got teary eyed reading it because it's what I needed to hear. Thank you!!!
GottaSki Mentor
GottaSki
Posted

Lisa...Thank you so much! Your words have helped me so much. (((Hugs)))) right back. Got teary eyed reading it because it's what I needed to hear. Thank you!!!

 

Thanks I will take them...we can all use them :)

C-Girl Contributor
C-Girl
Posted

Icelandgirl - I've been going through the same thing! It's super duper frustrating. I am beginning to suspect some sort of hormonal component to it - it is very obviously cyclical, and they did find a big old ovarian cyst they said was benign looking. But it's pumping out ridiculous amounts of estrogen. I don't know why that would give me D for weeks on end, but I do seem to get a week or two reprieve. I'm now tracking them both, in between the many tests that are costing me a fortune...

 

I nearly burst into tears when I went to a local farmer's market and saw a baked goods booth - they had the most beautiful loaves of bread and cakes and muffins. I glanced at them, wincing, but then noticed the "gluten free" sign. I asked, are these really gluten-free, as in safe for celiacs made with certified gluten-free ingredients or are they Paleo gluten-free? She said no no no, these are certified gluten-free. I told her I loved her. :)

notme Experienced
notme
Posted

ahhh, the hormones...........  yeah, i have to remind myself every month (when i start feeling tired & my insides get wonky) that i should check my calendar before i think i'm glutened.  i am at the menopause age, pretty much  - i have no idea what sort of mutant baby eggs i have left in my ovaries and i'm ready to be done with it!  lolz  :D

 

((((((((((((((((((((((hugs)))))))))))))))))))))) to e'erybody who needs some :)

IrishHeart Veteran
IrishHeart
Posted

Lisa...Thank you so much! Your words have helped me so much. (((Hugs)))) right back. Got teary eyed reading it because it's what I needed to hear. Thank you!!!

 

 

I would have said about the same thing as Ski (because at times we seem to share a brain) so I'll just add a HUG, a "chin up, sweetie' and

and a hang in there-- it does get better. 

 

Something you said caught my attention: H. pylori infection. 

How as that treated?? My dad had this and I know a little about how rascally it can be. Just want to be sure you've got it eradicated.

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. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    4. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
    5. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,255
    • Most Online (within 30 mins)
      7,748
    Christie Fassel
    Newest Member
    Christie Fassel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
×
×
  • 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.