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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748

    Jean MacDonald
    Newest Member
    Jean MacDonald
    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

    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.