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. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    2. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

    3. marion wheaton
      - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    4. trents
      - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a...
    5. BlessedinBoston
      - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748
    Heather8280
    Newest Member
    Heather8280
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.