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. - Scott Adams replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    3. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      23

      Pain in the right side of abdomen

    4. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

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

    • Total Members
      133,667
    • Most Online (within 30 mins)
      7,748

    S.Aulman
    Newest Member
    S.Aulman
    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

    • Scott Adams
      Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.
    • Heatherisle
      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
×
×
  • 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.