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

[mindyandy420]

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!!!!

[OptimisticMom42]

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]

UPDATE

GOT RED ITCHY PAINFUL RASH ON BUTT

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

[TotalKnowledge]

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]

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]

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

[glutenmommy]

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

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?

[mindyandy420]

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

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?

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]

Thanks! It does sound suspiciously similar...

[April in KC]

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]

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]

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

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?

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]

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]

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]

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]

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.