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

Glutened....myself To See...i Dont Understand?

mindyandy420

Recommended Posts

mindyandy420 Apprentice
mindyandy420
Posted

I have not been on the diet because I must continue to eat gluten till I get tested.

I went out of my way yesterday to eat 2 pieces of whole wheat bread to see what my instant reaction would be. Nothing really happened. Mild heartburn (very unusal for me) but other than that no running to the bathroom, no stomache ache, no nothing. All my problems seem to be more active in the morning. Like this morning....D again.

Not solid not watery but very very soft broken up poo.

Ugh....I just dont know. I am going to continue to monitor my sx when I eat gluten.

Why is it sometimes I feel nothing and sometimes it hits me like a ton of bricks?

This is such a fickle disease!!!!

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

Celiac.com Sponsor (A8-M):


OptimisticMom42 Apprentice
OptimisticMom42
Posted

OK so you have "d" when you wake up and heartburn after eating bread but you don't think you are having symptoms? Everyone is different but those sound like symptoms to me.

I know my Lays potato chips where not gluten free because after eating them my elbows itched, the next day I didn't have a bm and by evening it felt like something was biting the back of my left knee. These are very mild reactions that warn me of the damage I am doing to my insides.

The "d" isn't important. Preventing further damage is.

Hope this helps

mindyandy420 Apprentice
mindyandy420
Posted
  • Author

UPDATE

GOT RED ITCHY PAINFUL RASH ON BUTT :o

TOO BAD I DONT HAVE INSURANCE YET TO HAVE DR CHECK IT OUT :(

TotalKnowledge Apprentice
TotalKnowledge
Posted

You can always try not eating gluten for a while and see if you feel better. If you do there may not be so strong a reason to get tested. If you know something effects you badly it is easier to cut it out.

If at some point you want to get tested for piece of mind you can do a challenge. A challenge while eating gluten isn't really going to tell you a whole lot. You would be trying to tell the difference between feeling bad and feeling bad.

LDJofDenver Apprentice
LDJofDenver
Posted

I'm laughing WITH you, not at you! This past winter I got the most horrible butt hives! They were huge! Obviously accidentally glutened myself. Oh boy. Had to take 2 Benadryl and crash.

laurelfla Enthusiast
laurelfla
Posted

I also had only morning stomach problems before diagnosis. It doesn't necessarily have to happen right after you eat the offending food.

glutenmommy Rookie
glutenmommy
Posted

Mindy, could I ask you a "personal" question? :rolleyes:

At the risk of revealing TMI (!) could you describe your rash (sorry!)? Because I suffer the same thing everytime I ingest gluten and the doctor keeps labeling it "pruritis ani" which is kind of a catchall term for itchy *utt! I'm getting SO frustrated because I keep explaining that it ONLY happens when I ingest gluten. Sorry to be so blunt, but does your rash occur on your buttocks or more in the anal/private area? :o

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

Celiac.com Sponsor (A8-M):


mindyandy420 Apprentice
mindyandy420
Posted
  • Author
Mindy, could I ask you a "personal" question? :rolleyes:

At the risk of revealing TMI (!) could you describe your rash (sorry!)? Because I suffer the same thing everytime I ingest gluten and the doctor keeps labeling it "pruritis ani" which is kind of a catchall term for itchy *utt! I'm getting SO frustrated because I keep explaining that it ONLY happens when I ingest gluten. Sorry to be so blunt, but does your rash occur on your buttocks or more in the anal/private area? :o

Glutenmommy- TMI that is ok. You cannot get answers without asking no matter how graphic. My rash isnt big just a few itchy bumps that turned red after I itched it. I did get it between my butt and my front area during my last period. I dont know if that because of that or not. Not on private area but close. It was more off to the side but not on thighs. Hard to explain. Dont think I've ever had it near anal area. Next time have your dr do a biopsy near rash not on.

I do hope you find answers...I'm still looking also.

glutenmommy Rookie
glutenmommy
Posted

Thanks! It does sound suspiciously similar...

April in KC Apprentice
April in KC
Posted

For years, my husband's symptoms were not very definite, but he definitely had "GI issues." He never thought he could tie it to a specific food, and he never knew when he was going to get sick.

After going completely gluten free, he no longer gets sick. If he gets glutened by accident, his worst symptoms are always the morning after. It took going completely gluten free for a couple of weeks to prove to him that it really was gluten causing his problems. (That, plus his TTG blood test was positive...)

Also, family member I know who has Celiac has noticed that he can eat gluten about one time a month with no obvious symptoms, but if he eats it again the next day he gets quite sick. (I'm not recommending anyone try this...he's older and just does what he wants.) His theory is that his symptoms (mild GI and lots of brain fog, cognitive problems, etc.) - that his symptoms are more a result of the gluten antibodies than the direct damage to his gut. So by waiting a month, he lets his antibody levels decline to the point where eating gluten once does not really bother him that much. But after eating once, his theory is the antibodies build back up from that one exposure, and if he eats a second time in a row, then he really has strong symptoms.

glutenmommy Rookie
glutenmommy
Posted
Also, family member I know who has Celiac has noticed that he can eat gluten about one time a month with no obvious symptoms, but if he eats it again the next day he gets quite sick. (I'm not recommending anyone try this...he's older and just does what he wants.) His theory is that his symptoms (mild GI and lots of brain fog, cognitive problems, etc.) - that his symptoms are more a result of the gluten antibodies than the direct damage to his gut. So by waiting a month, he lets his antibody levels decline to the point where eating gluten once does not really bother him that much. But after eating once, his theory is the antibodies build back up from that one exposure, and if he eats a second time in a row, then he really has strong symptoms.

Oh my gosh!!!!!!!!!!!! This makes perfect sense to me!! I really do think there is something to your family member's theory. After being gluten-free for more than a month, I accidentally ate a large dinner that I thought was gluten free (found out later it was not) but I experienced NO usual symptoms. I was beginning to think that this whole gluten thing was all in my head and maybe I really COULD eat gluten afterall. So after waiting a whole day and then eating a large whole-wheat bagel the next morning, my rash flared up full force. Thank you so much for posting this. What a strange thing this gluten intolerance is... it really does take a LOT of detective work to figure this all out. I'm still not sure whether I'm a full-blown celiac or not, but I know I feel much better when I avoid gluten.

jkr Apprentice
jkr
Posted
Mindy, could I ask you a "personal" question? :rolleyes:

At the risk of revealing TMI (!) could you describe your rash (sorry!)? Because I suffer the same thing everytime I ingest gluten and the doctor keeps labeling it "pruritis ani" which is kind of a catchall term for itchy *utt! I'm getting SO frustrated because I keep explaining that it ONLY happens when I ingest gluten. Sorry to be so blunt, but does your rash occur on your buttocks or more in the anal/private area? :o

I've had that "itchy" feeling for years and it's right where you describe, in the "anal" area. And it's always worse when I eat gluten. I'm eating gluten for an endscopy in a few weeke so it's always "itchy". Does the doctor give you anything for the itch?

Kitface Newbie
Kitface
Posted
I've had that "itchy" feeling for years and it's right where you describe, in the "anal" area. And it's always worse when I eat gluten. I'm eating gluten for an endscopy in a few weeke so it's always "itchy". Does the doctor give you anything for the itch?

JEEBUS! i never thought it might be related!!! i get the itch sometimes and just HATE it. i get it 'in front' too and it drives me INSANE!

I got quite ill recently with a virus (not swine) and got really bad mouth ulcers all over my tongue and i had the 'sores' in my 'bits' too. that was one awkward conversation with my chemist... they recommended a std clinic!

but they cleared up when the virus left.

it makes sense its my body breaking out in the virus cos i'm getting it worse with the non-existant immune system.

ksymonds84 Enthusiast
ksymonds84
Posted
Oh my gosh!!!!!!!!!!!! This makes perfect sense to me!! I really do think there is something to your family member's theory. After being gluten-free for more than a month, I accidentally ate a large dinner that I thought was gluten free (found out later it was not) but I experienced NO usual symptoms. I was beginning to think that this whole gluten thing was all in my head and maybe I really COULD eat gluten afterall. So after waiting a whole day and then eating a large whole-wheat bagel the next morning, my rash flared up full force. Thank you so much for posting this. What a strange thing this gluten intolerance is... it really does take a LOT of detective work to figure this all out. I'm still not sure whether I'm a full-blown celiac or not, but I know I feel much better when I avoid gluten.

Everyone's system is different. I was over 1 1/2 years gluten free and when I did the challenge it took about a month for the symptoms to come back full force such as joint problems, water diarrhea, and horrible bloating! Had to discontinue since I was so sick.

nora-n Rookie
nora-n
Posted

Another thing that seem sto be related to gluten, besides DH and other skin things, is hidradenitis suppurativa.

Several people have posted here saying their hidradenitis disappeared off gluten.

curiousgeorge Rookie
curiousgeorge
Posted

I get the itchy rash which I think is DH all over my bottom if am accidentally glutened. Its on my actual cheeks and will wake me up at night. Its definatly in the spots that get pressure where I sit. This past time, it even spread to my inner legs.

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.