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

Do You Find You Are More Sensitive The Longer You Are Luten Free?


HaileyRay812

Recommended Posts

HaileyRay812 Rookie

I am curious if any of you have noticed you have more symptoms the longer you stay gluten free? The longest I have gone so far is 2 weeks and then when I got back on gluten, I instantly was so itchy and lethargic! I also would feel like I was getting hives. Most of my symptoms in the past have been gi and sinus infections. The longer I am off gluten, will I react stronger and stronger to it as it completely leaves my system?


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



Celiac.com Sponsor (A8-M):



Austin Guy Contributor

I've only been off gluten for 90 days, but getting accidentally glutened now makes me feel much worse than it did when I ate it regularly. So for me, it seems that I am more sensitie now.

starrytrekchic Apprentice

It made me feel much worse for about a year, then things started getting significantly better.

RacerX35 Rookie

I have been gluten free for just over a year now and believe that I have become more sensitive. I can't even eat a pepperoni off the top of a pizza anymore. I did last time and had a minor siezure in bed and I believe that it was from the pepperoni.

Later,

Ray

stephharjo Rookie

I am more sensitive as well. 1 1/2 weeks I was gluten free and accidentally ate tacos where the seasoning had wheat in it and I was sick for two days.

GottaSki Mentor

We have several celiacs in my family and we all become more and more sensitive as time went on. One of my teen aged sons will occasionally (one item once every few months at school or social activity) ingest gluten on purpose, each time he became sicker and for longer. I think he's gone about 4 months without a slip now and he says he's done with tempting it.

SpiralArrow Rookie

I've definitely experienced this recently. Before I realized it could be gluten that was bothering me, I had problems like severe insomnia, constipation, bloating, constant brain fog and lightheadedness, higher anxiety, etc. These things are bad, but after having doctors tell me there was nothing wrong I was beginning to just accept this as something to expect every day. Everything was getting worse at a slow pace.

I went gluten free for 3 or 4 weeks, and now my reactions are terrible. I've spent almost a week now recovering from a stupid experiment that involved eating a muffin. I was bed-ridden with stomach cramps that prevented me from walking, terrible nausea, constipation, bloating, and I was on the verge of having panic attacks on my worst day. I felt like I was dying! The week was comparable to how ill I felt when I got swine flu, and that was no fun at all.

For some people, I think once your body knows what it's like to be free of a substance that is causing it damage, it REALLY lets you know if you're under attack again. :lol: Whereas before if you're eating daily doses of gluten there is no real time for your body to swing from recovering to being newly damaged again. If that makes any sense.


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

Hi,

I think you'll find variation on this board, as always; however, I will say that when I was a couple of years in to being gluten free my reactions were off the charts and now, as I'm into my 6th year, they may be a tad less dramatic. That said, I am supremely sensitive to the evil gluten and, frankly, am afraid of it for the way it makes me feel.

Most veterans of this board, however, I suspect might gently advise you that there is a LOOOOooonnnng learning curve with gluten sensitivity and, typically, (again, with caveats...), it can certainly take up to a year or more gluten free to rout out other suspect sensitivities and isolate your true gluten response. Sorry if that sounds alarming and heinously arduous but... there it is. Some are lucky and find they have no other intolerances and can simply eliminate obvious gluten and be just swell. Sadly for many of us, that is just not the case and the detective work can take more time than we'd like!

Good luck and good health to you!

lisa

mushroom Proficient

I am fortunate or (un)fortunate in that gluten is the mildest reaction of my sensitivities. Pure gluten (as in medications, which is often how I end up with it) causes mostly nausea and wanting to puke. But putting tomato with it as in pizza is a killer

cyberprof Enthusiast

I don't know if I'm "more" sensitive, I just recognize it better. About three days after diagnosis, I ate some boeuf bourguignon (a la Julia Child) that I had cooked and frozen half the recipe before diagnosis: The recipe has about 4 pounds of beef and 1/4 cup of wheat flour, meaning I ate about 1/10 of the recipe, which is about a 1/4 tablespoon of wheat. So I had been gluten-light about three days -- meaning I didn't eat anything knowingly but wasn't an expert yet on gluten-free -- and boy did I notice that boeuf bourguignon had wheat! But it's about the same level of reaction that I had last week after a dinner out, when I got an unknown quantity of gluten.

Skylark Collaborator

I got more sensitive after a few years gluten-free.

PainfulSpaghetti Newbie

I have a theory as to why this happens. A Gluten sensitivity / allergy, is an autoimmune disorder, and when we eat Gluten our bodies attack themselves. When we are eating it on a daily basis, a vicious cycle occurs, and the body is constantly fighting off the gluten attack. When you stop eating Gluten and then introduce it to the system again, your body is fighting at full force. Therefore the symptoms are far worse. Even a Tablespoon of soy sauce causes me to become itchy, and bloated and headachy and just plain ill. Think of it this way, when you are eating gluten on a regular basis, your body is sick, and after awhile it becomes almost accepted that you are. When you stop eating gluten all of the damage slowly starts to get better. But if you introduce it again, much like throwing a drop of gasoline on a fire that is almost out, your body "flares up".

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    2. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    3. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,260
    • Most Online (within 30 mins)
      7,748

    sbr
    Newest Member
    sbr
    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

    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • 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.