Jump to content
  • 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):

How Do Your Glutening Symptoms Compare To Pre-Diagnosis Ones?


nostalgic

Recommended Posts

nostalgic Rookie

I'm just wondering if people feel like their glutening symptoms are similar to those they experienced before they were diagnosed and ate gluten regularly.  For example, if you had issues with DH before diagnosis, is that still your main symptom if you get glutened?  I have been as gluten-free for a month (but may still be getting CC'd, I need bloodwork) and have NO idea what to expect from glutening.  Before diagnosis I had no consistent symptoms except maybe stomach pain on occasion. It's pretty upsetting to think it could go from mild and bearable to severe and interfering!  :wacko:


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



Celiac.com Sponsor (A8-M):



pianoland Rookie

A lot of celiacs say it takes about a year to fully heal, so you might experience some glutening symptoms as you heal. (I recommend keeping a food log because it's the best time to discover any possible food sensitivities.)

 

Anyway, my symptoms pre-diagnosis were much worse than if I get glutened now. It only takes some cross-contamination to trigger symptoms though. Typically it's rumbles/gas and exhaustion. I can't speak for DH. 

 

I do remember thinking the same thing...kept hearing how symptoms would worsen the deeper I'm into the diet. However I don't find this to be true. The symptoms aren't worse but I've become much more sensitive.

1desperateladysaved Proficient

My symptoms before gluten free seemed very mysterious.  I had nearly constant brain fog and insatiable fatigue.  I swelled and bloated.  I wasn't "sick" enough to be able to rest, but it was so very hard to act normal.  Now, having been gluten free for months I get cramping and diarrhea several hours after my mistake.  I consider this much easier to deal with.  It helps me make sense of what not to eat again.  It is however, more intense and I am unable to work through it.  The day after the experience, I notice swelling and dark circles under my eyes.  I also have a reoccuring itchy spot on my neck.

EricaM15 Rookie

I thought I was imagining the itchy spot on my neck last time I was glutened. It was right by my collarbone.

 

I had a plethora of symptoms before going gluten-free relating to malfunction of every organ. When I get glutened now, I usually know right away. Usually I get all the GI symptoms first. Sometimes I get kind of sweaty for a bit and then I'll usually have insomnia that night and brain fog the next day. If it's a CC issue, it's usually a very mild reaction and I'll get tired and have a headache. However, when I discover a new intolerance, my pre-gluten-free symptoms return very slowly until I start to notice them and then I have to figure out what food is causing it. One of the times I discovered a new intolerance, I was having trouble sleeping, my left arm went numb occasionally, itchy feet at night, night sweats, joint and muscle pain, brain fog, anxiety, GI problems, headaches, fatigue, and more. It's all really weird.

foam Apprentice

Apart from the persistent sores all over my skin I used to end up on the toilet with huge pain at 2am not even knowing my name or if I was alive or not... quite a strange thing, then I'd slowly become lucid again and then go back to sleep :P. These days gluten has almost no effect on me whatever other than ruining my gut more which I'm still trying to fix. Plenty other foods give me worse problems than gluten now but it was the original cause.

nvsmom Community Regular

Mine are pretty much the same too. No worse but no better.

Kate79 Apprentice

The ones I had before diagnosis are pretty much the same (migraines, fatigue & irritability).  But I've got a bunch of new symptoms, mostly stomach related, that I didn't have pre-diagnosis (bloating, cramps, gas, C and/or D).  I also get a rash on my rear end that I never had before.  Don't know if it's DH or something else, but it comes pretty reliably a few days to a week after I get glutened.  I've also gotten much more senstive to gluten, so I'll get symptoms with just a little contamination, and it'll take a few weeks before they're completely gone.


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

I did not have obvious symptoms when I used to eat gluten.  In retrospect I can attribute things to it such as miscarriages.  Now when I get glutened (it happened once a month or so ago) I get very ill, vomiting, diarrhea, migraine and sinus problems.  At least now I know what to expect! 

nostalgic Rookie

Thanks everyone for your responses, it looks like it really runs the gamut.  It looks like things get less chronic and more acute though.  I'm sure I'll be back at some point to add how glutening compares for me.  :(

starrytrekchic Apprentice

My symptoms definitely went from chronic to acute.

 

Before, I constantly felt bad. Diarrhea, eye-ataxia, a whole host of stuff attributed to low vitamin levels (covered in bruises, no night vision, brittle/thinning/faded hair), random migraines, bloating, constant hunger, weight gain. My stomach area would hurt most days, leading me to be curled up in a fetal position. I also got very confused after eating, and I was constantly exhausted.

 

Now, I have rolling queasiness and nausea starting about 15 minutes after getting glutened. It's much stronger than any stomach problems I had before going gluten-free. Sometimes I still have migraines, ataxia (eye, speech, walking, using my hands), a "high" feeling, confusion, and either constipation or diarrhea after a glutening. Everything goes away in a few days, though, and all my long-term problem (like vitamin deficiency) are gone. I feel mostly fine between glutenings. Lots of things have improved.

glutego Newbie

Somebody here once said something like, "the food's I was addicted to and binged on are now the foods that I can't tolerate and cause me problems."  I would like to second that.   I can't even eat dark chocolate anymore.

cavernio Enthusiast

I've developed what only makes sense to be DH on one of my fingers, and I get peripheral nerve pain if I've passed some low threshold of gluten. I seem to get tooth and gum pain (just nerve pain in my mouth instead of extremeties) a day after I have been glutened. I once got bumps on my neck and lower skull and ears.

I'm still not over the mental problems being gluten free, but suffice it to say I don't notice any difference there if I've had gluten. Any change in my emotions or tiredness is all better explained through things like PMS and caffeine or alcohol or changes in sleep patterns, and they don't often coincide with the nerve pain.

 

I did have a chronic pain in my colon before being gluten free. And peripheral neuropathy that was constant. My bowels were never really bad before and aren't terrible now. They're not great either. My intestines aren't healed anywhere near to full yet though.

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. - trents replied to Name's topic in Related Issues & Disorders
      3

      Worsening vision 🕵🏽‍♀️

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

    • Total Members
      134,034
    • Most Online (within 30 mins)
      10,442

    Waneta Cox
    Newest Member
    Waneta Cox
    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

    • trents
      Vitamin A is important for vision health. But be careful in supplementing it as it can lead to toxicity. Research it and consult with your medical professional. I do not have a definite answer to your original question but I was pursuing the possible cause of nutritional deficiency. But your visual deterioration could be unrelated to your celiac disease so don't rule that out.
    • Name
      Currently 19. Doctors think I was 1 year old when celiac started, but I wasn't diagnosed until 18, because they didn't do lab work on minors. I've been on a strict gluten-free diet for 14 months now. For example only certified gluten-free nuts and I've researched best brands a lot. I take B vitamins, vitamin D, vitamin C, Curcumin with black pepper, black sesame and green tea extract, magnesium, iron, and a little selenium and zinc, beef liver capsules. I recently had my vitamin and mineral levels retested and D is the only one I don't have enough of now. I had my eyes tested at 17 and they were good back then.
    • Scott Adams
      Not everyone with dermatitis herpetiformis needs to avoid iodine. DH is caused by gluten exposure, but iodine can worsen or trigger flares in a subset of people, especially when the rash is active or not yet controlled by a strict gluten-free diet. Some people react to iodized salt, seaweed, shellfish, or iodine supplements, while others tolerate normal dietary iodine without problems. In most cases, iodine restriction is individualized and often temporary, not a lifelong rule for everyone.
    • trents
      Questions: How old are you now? How long ago were you diagnosed as having celiac disease? Do you practice a strict gluten-free diet? Are you taking vitamin and mineral supplements to offset the nutrient malabsorption issues typical of celiac disease and if so, can you elaborate on what you are taking?
    • Name
      My vision was good as a teen and now has gotten worse in the last year. Could that be caused by my celiac disease?🤓😎🥸👓🕶️
×
×
  • Create New...