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

Just A Little Gluten?


Nurse Belly Blues

Recommended Posts

Nurse Belly Blues Newbie

Sometimes I'm amazed at how sensitive I am. Been gluten free on and off for four years and I always feel better-way better off. Yesterday I came across some amazing ginger cookies at a farm stand and ate three! Oh so delicious and oh so stupid. Was up all night pooping what felt like glass coming out and the burning was nearly unbearable. Went on for about an hour every fifteen minutes then finally settled down. Do you think it was the cookies? It seems crazy that it would work like that, but I also have no colon, having lost it to ulcerative colitis 16 years ago, so everything goes through me at the speed of light. What do you think?

Belly Blues +++


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

When all it takes is 1/100th of one peanut to cause a reaction and internal damage it would not be surprising for the cookies to cause that! Three cookies can contain a lot of gluten. Have you been diagnosed with celic or gluten intolerance? If so, you should be strictly off gluten for the rest of your life (sorry but it is true :( ).

Hope you feel better and heal quickly! Welcome here. :)

kellynolan82 Explorer

When all it takes is 1/100th of one peanut to cause a reaction and internal damage it would not be surprising for the cookies to cause that! Three cookies can contain a lot of gluten. Have you been diagnosed with celic or gluten intolerance? If so, you should be strictly off gluten for the rest of your life (sorry but it is true :( ).

It usually (if not always) takes more than 1/100th of a peanut (from the beginning to the end of a normal day). Generally, it's best to not frequent more than 50mg of gluten a day (i.e. ~1/100th of a slice of bread). Let's do a calculation. Might help with the reasoning :huh:

A research study showed that well over 80% of celiacs can safely eat somewhere between 10-50 mg of gluten per day. The gluten tolerance threshold (in milligrams) is generally thought to be somewhere in the range of 0.6 to 150. Most have a threshold that probably exists somewhere between 50 and 100 mg. Let me illustrate it more closely:

mgg = milligrams gluten per day

Estimated Total Celiac Population Range of Threshold: 0.6 < mgg < 150

Estimated Range of Tolerance for most Celiacs: 50 < mgg < 100

Seeing as though wheat flour would most likely have been included as a primary ingredient, your daily dosage of gluten would have been at least several-hundered times well above the norm. Thus the damage caused by this could really take quite a while to heal, even once you *feel* better. :(

I empathise with you though. I had a friend who was tempted to eat a piece of cake despite being on the gluten free diet for 11 years. She wasn't particularly sensitive to *small amounts* of gluten but boy was this a real learning experience for her...

I recently posed a question about how many parts per million (ppm) of gluten would be in a typical piece of cake. Here's a link to the discussion we had.

All the best. :)

RacerX35 Rookie

For me, as I've stated before. I don't get most of the symptoms of others. My tell of gluten intake is to have seizures (I'm also epileptic). I've eaten the pepproni off a pizza and ended up having mild seizures for at least a day or if I'm lucky, overnight while in bed. So all in all, I believe that the gluten sensitivity is more pronounced after being free of it for sometime.

Later,

Ray

love2travel Mentor

For me, as I've stated before. I don't get most of the symptoms of others. My tell of gluten intake is to have seizures (I'm also epileptic). I've eaten the pepproni off a pizza and ended up having mild seizures for at least a day or if I'm lucky, overnight while in bed. So all in all, I believe that the gluten sensitivity is more pronounced after being free of it for sometime.

Later,

Ray

Same here - I never have become ill from eating gluten so I found it extra hard going gluten-free! But am glad I did, of course, as damage was being done inside. I have never had seizures like you, though.

Part of me is curious about trying gluten now after being strictly gluten-free for six months but I won't. Wonder how I would react now?

kellynolan82 Explorer

Part of me is curious about trying gluten now after being strictly gluten-free for six months but I won't. Wonder how I would react now?

I think after six months it could very well be quite a lot worse than you would have before going gluten free. Try going about four to five years being gluten free before 'cheating'! Many find that if their bowel and gut tissue is in perfect shape, the glutenning isn't nearly as bad.

But it is somewhat estimated, from what I've heard, to take up to 2 years for some before they're completely healed from the damage, so I think staying completely gluten free (and avoiding *all* traces) at least until then is CRITICAL! :mellow:

love2travel Mentor

I think after six months it could very well be quite a lot worse than you would have before going gluten free. Try going about four to five years being gluten free before 'cheating'! Many find that if their bowel and gut tissue is in perfect shape, the glutenning isn't nearly as bad.

But it is somewhat estimated, from what I've heard, to take up to 2 years for some before they're completely healed from the damage, so I think staying completely gluten free (and avoiding *all* traces) at least until then is CRITICAL! :mellow:

Oh, most definitely! No one need worry - I would be the last person to ever, EVER cheat. I have no need to. You should see how meticulous I am! :lol: My health care team members have told me that it takes 2-5 years to completely heal but I am not looking at it in terms of time as I must be super strict regardless. I am just a very curious person by nature so always wonder about things...


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



Celiac.com Sponsor (A8-M):



PainfulSpaghetti Newbie

I am extremely sensitive now after taking it all completely away, and my body is trying to heal, which is doesn't do well as I have multiple Auto Immune diseases, if I even have a tiny bit I sure do know it! A TINY bit. Which is why I get so frustrated at products that list "less than 20ppm" Even the tiniest bit makes me sick, and my mouth swells up, and I am holding my pour screaming stomach.

moose07 Apprentice

I think even the tiniest amount could make you sick let alone eating three cookies. I haven't purposely eaten something with gluten in it since diagnosis but the times where my food has been cross contaminated have ranged from horrible to only slightly sick. So I really think it depends on each person. But I know I can't even walk into certain restaurants without getting slightly sick so obviously just a little gluten has the potential to make someone sick.

Nurse Belly Blues Newbie

Well, that solves that. To answer some questions, yes, I have been diagnosed through biopsies and scope which showed the destroyed villi. That was a few years ago, and I have gone on and off gluten free. Most of my symptoms seemed to be related to muscle pain, aches, brain fog etc.

However I also have scleroderma, fibromyalgia and atherosclerosis so I attributed the symptoms to other problems as I hated giving up gluten and hoped it wasn't that making me feel so yuckky.

But now my belly is bloated to extremes, I've gained a lot of weight, I'm sluggish and now diarrhea and pain with BM's which I had totally conquered. I feel soooooooooooo much better off gluten but I seem to 'forget' when the cravings get too bad. I have found a few rally good items that satisfy and NEED to lose weight for multiple reasons, so my motivation is high now. I will check in here to keep myself honest. Thank you all for being here!!

Karen

love2travel Mentor

Well, that solves that. To answer some questions, yes, I have been diagnosed through biopsies and scope which showed the destroyed villi. That was a few years ago, and I have gone on and off gluten free. Most of my symptoms seemed to be related to muscle pain, aches, brain fog etc.

However I also have scleroderma, fibromyalgia and atherosclerosis so I attributed the symptoms to other problems as I hated giving up gluten and hoped it wasn't that making me feel so yuckky.

But now my belly is bloated to extremes, I've gained a lot of weight, I'm sluggish and now diarrhea and pain with BM's which I had totally conquered. I feel soooooooooooo much better off gluten but I seem to 'forget' when the cravings get too bad. I have found a few rally good items that satisfy and NEED to lose weight for multiple reasons, so my motivation is high now. I will check in here to keep myself honest. Thank you all for being here!!

Karen

My FMS is pretty severe so I understand your woes.

Glad you stopped by! Hope to "talk" to you later...

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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,913
    • Most Online (within 30 mins)
      7,748

    Jennrhart
    Newest Member
    Jennrhart
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.