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Severity Of Symptoms 12+ After Going gluten-free

beebs

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beebs Enthusiast
beebs
Posted

I have seen a few people mention that after being gluten free awhile and when your gut has healed that symtpoms aren't as bad as before going gluten free.

The last time I ate gluten I really thought I was going to die and ended up in ER that was 6 weeks after going gluten-free. I have been on high alert ever since, I was just thinking though - maybe it won't be as severe now that I have been gluten-free for 12 months. What are your experiences??

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Roda Rising Star
Roda
Posted

My glutening symptoms have changed and gotten worse. I used to think the constipation was bad. I find myself thinking that when in a full on glutening I wish for constipation. :huh::lol:

Symptoms prediagnosis: iron deficiency/low ferritin, tachycardia, fatigue,irritability, constipation and reflux.

Symptoms after diagnosis: reflux, bloating/gas, constipation, irritablity. Symptoms would abate after about 5-7 days. This was my typical gluten symptoms for a little over a year.

Symptoms now: reflux, severe gas/bloating, diarrhea, steatorrhea, pimply sore/itchy rash on buttocks, irribility and pinching/tugging/pain in RUQ. Symptoms typically last anywhere from 1-2 weeks before they resolve.

I also get the same reactions if I eat gluten free oats or any product contaminated with them.

Di2011 Enthusiast
Di2011
Posted

beebs.

it is time to consider your self gluten free. Is now a good time? Yes: just do it

ravenwoodglass Mentor
ravenwoodglass
Posted

I have been gluten free now for 9 years and my reactions to gluten are still very, very severe. The only thing that has lessened is my DH but the extreme bowel issues including bleeding, brain fog, depression and joint pain are still debilitating.

Metoo Enthusiast
Metoo
Posted

I have seen a few people mention that after being gluten free awhile and when your gut has healed that symtpoms aren't as bad as before going gluten free.

The last time I ate gluten I really thought I was going to die and ended up in ER that was 6 weeks after going gluten-free. I have been on high alert ever since, I was just thinking though - maybe it won't be as severe now that I have been gluten-free for 12 months. What are your experiences??

I have only been gluten free for 5 or so weeks, and I used to have what seemed to be 'random' stomach pain, I could go months without it. Now since being gluten-free the 2 times I accidently ate even a spoonful of something with gluten the pain is back full force for hours. I can't imainge what would happen if I actually ate a bagel or something or ate gluten for a week straight.

I definitly think you become more sensative.

beebs Enthusiast
beebs
Posted
  • Author

I know I have to be gluten-free forever, I guess what I was wondering is how careful I have to be. Is it going to kill me if I accidently eat gluten? I admit - I hate having that hanging over my head. Its not being gluten free - I am used to it - I promise! I don't miss anything gluten really (except pastry) Its just feeling scared about eating that stresses me out!

Sounds like symtpoms get worse after being gluten-free for awhile - doh! B)

Hey Roda - the pimply rash on your bum? Is it DH? Because my eldest son used to get awful pimply rashes on his bum - he would just scratch them until there were big crater sores there, and the Specialst said it wasn't DH - but he hasn't had one episode since being gluten-free for 12 months. And he used to have it all the time!! It would drive him mad!

Roda Rising Star
Roda
Posted

Hey Roda - the pimply rash on your bum? Is it DH? Because my eldest son used to get awful pimply rashes on his bum - he would just scratch them until there were big crater sores there, and the Specialst said it wasn't DH - but he hasn't had one episode since being gluten-free for 12 months. And he used to have it all the time!! It would drive him mad!

I don't really know if it is DH, but I don't think so. However it is definately gluten related. It seems to only surface when I get glutened and then goes away with the rest of the symptoms.

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Di2011 Enthusiast
Di2011
Posted

Hi Roda / Beebs,

My upper thighs and bum were the worst of all places for my all over DH. I'm not formally diagnose but doc agrees it can't be anything else and all ((sllllooooowwwly)) clearing gluten free and iodine low.

I still have some lesions in those places :( It is as you infer, beebs, from your sons experience. Intensely itchy and seem "deep" like a cyst or absess (Open Original Shared Link) without much if anything actually "in it". Given the difference between these and other areas of my body it seems like the "toxin/acid" is deeper under the skin/flesh which would suggest why your son created the craters. The urge to "get it out" is relentless with my DH. I used ice packs day and night during the worst of it and being significantly older I guess scratching my bum to crater would be less of an urge :D but I wanted to so bad.

Di

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