Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

By Aphreal
in Coping with Celiac Disease

Recommended Posts

Aphreal Contributor
Aphreal
Posted

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
i-geek
Posted

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
curiousgirl
Posted

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
burdee
Posted

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
Skylark
Posted

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
srall
Posted

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
Aphreal
Posted
  • Author

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
summerteeth
Posted

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
mommyto3
Posted

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
Aphreal
Posted
  • Author

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
tarnalberry
Posted

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
mbrookes
Posted

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
GlutenFreeManna
Posted

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
mushroom
Posted

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
notme
Posted

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
K8ling
Posted

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
aderifield
Posted

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
curiousgirl
Posted

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
Aphreal
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,152
    • Most Online (within 30 mins)
      7,748
    angelwinds123
    Newest Member
    angelwinds123
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Bebygirl01
      Not Just Wheat, Barley and Rye Glutens that make us sick

      By Bebygirl01 · Posted

      You are on the money, but I should also add that Italian, French and other countries research shows exactly what I have said. Our FDA is behind the ball when it comes to this research and I am hopeful that Kennedy can straighten this out soon, albeit he is giving the food companies too long to just remove food dyes from our foods when in fact they have to remove all that in order to sell for example, in the UK as they aren't allowed such things. The food companies and the cola companies have also changed their formulas to have just sugar in them instead of corn gluten aka high fructose corn syrup and corn starch in them. Misinformation here in America is a very dangerous thing. I also have been grain free for a long time now and at no time can I even have the smallest amount of corn gluten -I recently got glutened from a supplement that claimed to be grain free yet upon further research I found that it had erythritol (corn sugar) in it and that is what got me sick for 7 days straight. I am not hopeful to ever be able to add back into my diet any of the grain glutens, but perhaps those who were only gluten intolerant might be able to, but for me being celiac, I have no hope in that. Thank you for the article, I will add it to my collection of research as I am collecting everything I can find on this subject and posting it on X as well as other places.  I also don't use psuedo grains i.e. quinoa as that also reacts negatively with my gut, so I am 100% a cassava/tapioca/arrow root girl and that is my go to bread replacement. There are some new items made with chicpea/green peas that are sold as rice alternatives, i bought one to try but haven't yet. So food companies are getting creative, but like you said, I am fresh whole foods and don't buy many processed foods, I make my own cheese, ketchup, pickles, jams, etc.
    • Dora77
      Energy drink can has stains - potential gluten?

      By Dora77 · Posted

      There were small spots (stains) on the drinking area at the top of the energy drinks can from the store that looked as the same color as milk — maybe oat milk (Hafermilch) or a wheat-based drink (Weizendrink), but I’m not sure what it was. There were also some particles that looked like either flour or dust, but not many. Could it have been a gluten-containing drink spilled onto the can or just regular small stains which I shouldn‘t worry about? Do you watch out for stuff like that or am I overthinking? Would it cause damage to a celiac?
    • Scott Adams
      Not Just Wheat, Barley and Rye Glutens that make us sick

      By Scott Adams · Posted

      This is such an important discussion! While corn gluten (zein) is structurally different from wheat gluten, emerging research suggests some celiac and gluten-sensitive individuals may still react to it, whether due to cross-reactivity, inflammation, or other factors. For those with non-responsive celiac disease or ongoing symptoms, eliminating corn—especially processed derivatives like corn syrup—might be worth exploring under medical guidance. That said, corn’s broader health impact (GMOs, digestibility, nutritional profile) is a separate but valid concern. Like you mentioned, ‘gluten-free’ doesn’t automatically mean ‘healthy,’ and whole, unprocessed foods are often the safest bet. For those sensitive to corn, alternatives like quinoa, rice, or nutrient-dense starches (e.g., sweet potatoes) can help fill the gap. Always fascinating (and frustrating) how individualized this journey is—thanks for highlighting these nuances! Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      Mama trying to help 3 year old!!!

      By Scott Adams · Posted

      I’m so sorry your little one is going through this. Celiac recovery can take time (sometimes months for gut healing), but the ongoing leg pain is concerning. Since his anemia was severe, have his doctors checked his other nutrient levels? Deficiencies in magnesium, vitamin D, or B12 could contribute to muscle/joint pain. A pediatric GI or rheumatologist might also explore if there’s concurrent inflammation or autoimmune involvement (like juvenile arthritis, which sometimes overlaps with celiac). Gentle massage, Epsom salt baths (for magnesium absorption), or low-impact activities like swimming could help ease discomfort while he heals. Keep advocating for him—you’re doing an amazing job!
    • Stuartpope
      Mama trying to help 3 year old!!!

      By Stuartpope · Posted

      Thank you for the input. We go back to the GI doctor in June- she wants to do more labs to check vitamin levels( not sure why the didn't check all at once with the iron being so low) and recheck inflammatory levels. Just trying to find him some relief in the meantime.
×
×
  • Create New...