Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Do Your Glutening Symptoms Compare To Pre-Diagnosis Ones?
0

12 posts in this topic

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:

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! 

0

Share this post


Link to post
Share on other sites

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.  :(

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,637
    • Total Posts
      921,542
  • Topics

  • Posts

    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,641
    • Most Online
      3,093

    Newest Member
    not diagnosed celiac
    Joined