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

Could This Be Gluten/wheat Related?

Wanda-E

Recommended Posts

Wanda-E Newbie
Wanda-E
Posted

I'm new here and would love some advice from people who know more about celiac disease and gluten/wheat sensitivities.

A few weeks ago I was dealing with an earache that just wouldn't go away. I also had really bad depression, was tired all the time and had night sweats/chills.

My husband suddenly asked me whether it might be the new cereal I had started to eat, since it was all happening at the same time.

This cereal has a lot of wheat and bran in it, so I started googling about wheat sensitivity.

The symptoms seemed to match (including the food cravings), so I decided to stop eating wheat/gluten for a while.

All the symptoms (including the earache) went away in about two weeks.

However, I've always been a major gluten eater. It just doesn't make sense to me that this could be related.

So I slowly started eating some gluten again and Friday decided to even eat seitan. Seitan is basically made from pure wheat gluten.

That evening I got a really bad headache. I didn't think it was related, because we'd had a very busy evening.

At 3 in the morning though, I woke up covered with sweat, had chills and a really bad stomach ache (including stomach acid). That stomach ache + headache stayed for several days. Today, a week later, is finally an okay day again. (I'd gone of gluten again the very next day).

It seems to all match, but still doesn't really make sense to me.

Why would this cereal suddenly trigger it, when I eat seiten (pure wheat gluten) all the time? Shouldn't that have triggered it?

And if the cereal triggered it, can it just go away again? I keep reading about staying of gluten for the rest of your life. Can it really not go away as fast as it came?

This is all very new to me.

I've been reading online a lot and just found a post on this forum that links celiac with gallbladder problems.

I had my gallbladder removed about 9 years ago.

Do my symptoms sound like a wheat/gluten sensitivity? Could it even be celiac disease?

Is the next step getting tested? I read that for most tests you have to be on gluten, so they can pick up on the antibodies. I'm really not looking forward to putting gluten back in my body right now.

After a week of so much pain, I can't take that anymore.

Any advice? Any tips? Any ideas?

I would love to hear from some people who have experience with all of this.

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

Celiac.com Sponsor (A8-M):


SLB5757 Enthusiast
SLB5757
Posted

I do not have much information for you because I myself am a "newbie" but I at least wanted to respond to you so you didn't feel like no one here cared.

I think that what you are describing could be multiple things. It could be Celiac, Gluten Sensitivity, a Wheat allergy, or just purely coincidental. It could be an allery or reaction to something else that was in your diet or a soap or other pollutant. It's just so hard to tell these days. I would suggest that you take this information to your GP and ask that e order a Celiac Panel just to be safe (if you have insurance). It would at a minimum give you peace of mind. There is a post or link on the home page of Celiac.com that specifically tells you what the doc should order. I had allergy testing done and it took all of about 20 minutes for them to deduce I had a wheat allergy. I had symptoms similar to you when I ate wheat as far as the hot flushing/sweaty episodes. as far at the Celiac Panel mine included:

Total IGE

Giladin IGA and IGG

TTG's

Anti-reticulin

and Endomysial antibodies

(again look for the post as I am sure I have missed a few words/terms here or there)

Good luck to you!!

Wanda-E Newbie
Wanda-E
Posted
  • Author

Thanks so much for answering! It does all feel very confusing and lonely.

Especially since I have to switch doctors now. I was never too happy with my doctor, but it didn't matter much, because I've always been healthy and hardly needed her.

Now I really feel I need a good doctor, I have to put some time into finding a good one.

I'm seeing someone next Wednesday. She was recommended by a friend and I hope she's good.

I'll ask about the Celiac Panel.

But don't I have to be eating gluten for this test to work?

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks so much for answering! It does all feel very confusing and lonely.

Especially since I have to switch doctors now. I was never too happy with my doctor, but it didn't matter much, because I've always been healthy and hardly needed her.

Now I really feel I need a good doctor, I have to put some time into finding a good one.

I'm seeing someone next Wednesday. She was recommended by a friend and I hope she's good.

I'll ask about the Celiac Panel.

But don't I have to be eating gluten for this test to work?

Welcom to the board, read as much here as you can as there is alot of info to be found.

Yes you do need to keep eating gluten until all testing is done. What you experienced does sound like it could have been a gluten reaction. If it happens again when you add gluten back in again so you can be tested that is also an indication that you shouldn't be eating it. What you did was a gluten challenge and that first may have turned out positive.

I hope things go well with the new doctor.

Wanda-E Newbie
Wanda-E
Posted
  • Author

Thanks for the advice. I'm eating gluten again. Am very scared though!

My head is hurting of course, but my stomach is still doing better than I expected (knock on wood).

I hope I'm not doing too much damage to my body.

We talked to my new doctor and she's going to do a celiac test on Wednesday.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

      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 ...
    2. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      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...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

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

      I think I am gluten intolerant

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS). Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. Your situation is a classic p...
    5. klmgarland
      - klmgarland posted a topic in Dermatitis Herpetiformis
      1

      Help I’m cross contaminating myself,

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis. I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t. Who knew tha...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748
    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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

    • 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.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      It took three years and several doctors and many tests, and lots of steroids and other bad medicine that didn’t do anything to finally find a competent doctor to get diagnosed with dermatitis herpetiformis.  I am meticulous about a completely gluten free diet now for more than a year and things were finally getting better until they weren’t.  Who knew that if I fed my dear invalid cousin a hamburger and used the same hand to eat a couple of her gluten free fries that I was cross contaminating myself.  Who knew that if my husband makes a sandwich and leaves crumbs on the counter which I sweep away with a dish towel then wash my hands and dry them on this same dish towel and then touch my lips that I potentially cross contaminated myself.  Who knew that just wiping off the table crumbs could still leave gluten on the table that has to be washed off with soap and water.  Who knew when my husband heats a tortilla by draping it over the toaster that gluten residue is possibly left behind.   Who knew that if my husband eats a gluten product and I kiss him on the lips that I was cross contaminating myself.  Who knew that if I should walk into the bakery to get my gluten free cupcake if they have been mixing up a batch of flour batter and there could be flour particles in the air I could inhale and contaminate myself.  Who knew I needed to be careful that my grand baby shouldn’t put there fingers in my mouth because they just ate a biscuit and I was cross contaminating myself.   Eating gluten free is the easy part.  But know one tells me how to live in the real world filled with gluten contamination just waiting to happen!   There I feel better getting all that off my chest but I feel isolated and alone in this journey. I sleep with a back scratcher, stand in my freezing cold pool, glob on tons of triamcinolone for the rash on my knees, back, bottom, elbows and ankles.  I use bottles of Scalpicine for the extensive rash on my scalp.  All my make up, medications, soaps, shampoos, cleaners, detergents are all gluten free.  But I still have a rash and I fear I will gouge and claw holes in my head and body before I can’t figure out how I am exposing myself to gluten.  I don’t even want to leave the house anymore.  I never eat any food or drink offered me at anyone’s home ever.  I can drink wine and eat potato chips!  Hurray for me, I finally agreed to try Dapsone even though I read it’s hard on your body but if I don’t get some relief am going to have a nervous breakdown from lack of sleep and high anxiety. Can anyone point me in the right direction? Thank you,  Helpless but Hopeful
×
×
  • 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.