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

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
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.