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

*maybe It's Not Gluten After All*


Aphreal

Recommended Posts

Aphreal Contributor

Do you ever feel like maybe it's all in your head? That your symptoms are gluten related because you make them?

I have been waking up with headaches again. This morning I woke with the headache AND the hip pain that I had gotten rid of when I went gluten-free.

So I start thinking back. The other night I had baked fish with a cream/mayo/spice type of toping. Broc, cheese and rice cassarole with spiced rice. I thought to myself... Maybe it's not gluten, I am so hungry for this baked fish dinner. I bet once won't hurt me and if that happens, I bet it's not gluten after all.

So i was talking myself out of it. First time ever I intentionally ate something not knowing what was in it. I mean it's not like gorging on bread but to me, I sabotaged myself.

I thought the reactions were always immediate. I see now that is not true. Today I feel like I did before I went gluten-free. Grumpy, the headache, heartburn, hip pain.

I am annoyed with myself, I am annoyed with gluten, annoyed with the confusion. I'm just mad today over this whole thing. Do you ever get like that? Blah blah blah blah blah


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



Celiac.com Sponsor (A8-M):



i-geek Rookie

Yes. And every time I've thought "oh, I'm not THAT sensitive. I'm sure it's fine to eat this" I've regretted it for days. Sorry that you're feeling so awful. I hope it passes soon. But hey, at least you know now.

curiousgirl Contributor

Yes. And every time I've thought "oh, I'm not THAT sensitive. I'm sure it's fine to eat this" I've regretted it for days. Sorry that you're feeling so awful. I hope it passes soon. But hey, at least you know now.

ABSOLUTELY!! I don't remember how long you've had celiac/gluten intolerance but, I don't think we'll ever outgrow hoping and wondering.

Hope you feel better soon...

burdee Enthusiast

Maybe it's gluten and other foods allergies (or intolerances). Maybe it's gluten and intestinal infections from pathogenic bacteria, parasites or funguses. Maybe it's gluten plus digestive difficulties due to impaired stomach acid production or even H. Pylori infection. My digestive difficulties did not disappear until I resolved all those other problems. However, I continued to abstain from gluten (and other diagnosed allergens), while I was testing for and treating all those other things.

Gluten intolerance can make us vulnerable to many other digestive problems. For me gluten intolerance was just the tip of my digestive difficulty iceberg. However gluten intolerance is correlated with so many other autoimmune conditions which can cause headache and other physical pains. I was recently diagnosed with hypothyroidism possibly due to Hashimoto's thyroiditis. That made me vulnerable to chronic gut and respiratory infections as well as chronic constipation, fatigue and cold intolerance.

Skylark Collaborator

I did that a few times my first year gluten-free, when I got into uncomfortable social situations and though "maybe a little won't hurt". It doesn't work - I can't eat gluten at all. You do have to convince yourself sometimes and I really hope you feel better soon.

srall Contributor

I feel that way all the time. Like maybe I'm remembering everything as much more dramatic than it really was. I had a "well I took communion post" the other day. Let me tell you...my body was in so much pain, I couldn't run to Target to buy my toilet paper yesterday because I was in the bathroom all day (OH...the Irony), and I've been dealing with anxiety. I guess I just need painful reminders every once in awhile I guess.

Aphreal Contributor

Yea I am only 3 months in and trying to learn. Because I have other unrelated issues, It is hard to tell what is what sometimes but the headaches and hip pain were DEFINATELY *pre gluten-free* symptoms.

Guess I won't do that again. Thank you guys for your support. This really is a great place to be.


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



Celiac.com Sponsor (A8-M):



summerteeth Enthusiast

I feel that way all the time. Like maybe I'm remembering everything as much more dramatic than it really was.

Definitely used to have that thought... then I would get accidentally glutened during my first of eating gluten free and realised that my reactions were WORSE than I remembered.

mommyto3 Contributor

I still struggle with the "what's causing this symptom" question daily. Often I can trace feeling crappy back to not being careful enough but sometimes I just sit there with a big question mark. Maybe it's addt'l food intolerances now like one of the previous posters suggested. Who knows.

One thing I'm certain of is that I get tired of the constant food analysis that goes along with Celiac. I long for the days when I could just eat anything and not think about it at all............

Aphreal Contributor

I still struggle with the "what's causing this symptom" question daily. Often I can trace feeling crappy back to not being careful enough but sometimes I just sit there with a big question mark. Maybe it's addt'l food intolerances now like one of the previous posters suggested. Who knows.

One thing I'm certain of is that I get tired of the constant food analysis that goes along with Celiac. I long for the days when I could just eat anything and not think about it at all............

YES exactly! I hope this gets easier with time.

tarnalberry Community Regular

Yea I am only 3 months in and trying to learn. Because I have other unrelated issues, It is hard to tell what is what sometimes but the headaches and hip pain were DEFINATELY *pre gluten-free* symptoms.

Guess I won't do that again. Thank you guys for your support. This really is a great place to be.

It's important to remember, though, that you CAN still have headaches and hip pain without it being gluten, even if those are potential symptoms of being glutened.

mbrookes Community Regular

I was diagnosed almost three years ago, and yes, it does get easier. It becomes totally natural. BUT.... there are still times that I rail against my body and cry ( big baby, huh?) because I can't just graze at a cocktail party or eat everything on the mid-way at a fair. Those times I try to remember how bad I felt and how exhausted I was all the time. My husband reminds me that he was afraid he would lose me ( I did almost die). That does help a little.

GlutenFreeManna Rising Star

I went through a denial stage at first, but all it took is one time intentionally eating pizza and I was "cured" of thinking it was all in my head. There's no way for me to "fake" the severe symptoms that occurred when I ate that pizza. I hope you get over the glutening and feel better soon.

mushroom Proficient

With all the other food intolerances, I sometimes start to wonder if gluten is really one of them, but then I remember the reactions I have had when a medication contained a tiny bit of gluten filler, and realize it is one of them too. If you don't have a straight and simple gluten intolerance/reaction, it can be easy to self-doubt.

notme Experienced

ugh, i am having a Bad Day. and then somebody comes on and posts exactly what i'm thinking. oh, man, maybe it doesn't make a damn bit of difference what i eat or do not eat. i'm just defective. so, some yummy pizza would be sooooo gooooood right now..........

buuuuut, my husband is my rock. he thought he was going to lose me, too. so he is my reason to stick with this. even if i am hanging by a thread today. :(

K8ling Enthusiast

Whenever I think this I remember The Cheerio Incident. The last thing with gluten in it that I ate was a bowl of cheerios. I thought it was safe. BOY was I wrong. I had to call my husband home from work because I was so sick I couldn't care for our son. My cramps were SO bad that I was crying.

The memory of that day has steered me away from food in general since that day.

I think the general consensus is right, just remember you'll feel better eventually.

aderifield Apprentice

I've been gluten free (except for the small, almost daily dose of yogurt I was erroneously feeding myself for the first 2 months) for about 3 months, now. I still walk around feeling like I am in a bubble, somehow, suddenly disconnected from the rest of the world and that this MUST be in my head or, I must be lost in a dream - dream-like state is more like it. That said, I want to emerge healthy so badly and my last run in with the yogurt cup (after not eating it for a few days) tells me there is no way I can go back to the time I was satiated in the gluten lifestyle.

I think we all feel like this cannot be my reality now and then regardless of how detrimental we know gluten to be.

curiousgirl Contributor

Are we evolved or created? Either way, are we meant to be perfect? I've been wondering about whether it's ALL gluten, other allergies, or just getting....uh....ummmm....older. People without gluten intolerance or celiac get head aches, muscle pain, depressed, too...or do they?

Aphreal Contributor

It sure stinks feeling sick but doesn't it put a little peace in your mind that someone can relate? you are not alone? You can be a baby and not be the only one?

aderifield, Yoplait has a gluten-free yogurt. It says it on the container. I ONLY buy those and not all yoplait are gluten-free.

Thank you all for relating. I do feel a bit better today. Still dreary, cramping, I need to *go* but can't. The hip pain is gone. The headache nearly gone.

Speaking of which....I need to make the kids something and I have to force breakfast. when I don't eat breakfast, I stop loosing weight like a dead train stuck in it's tracks!

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.