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

Exasperated By Daily Nausea And Migrains


Ciel121

Recommended Posts

Ciel121 Apprentice

Hi All,

  I was diagnosed 4 years ago and was doing well until about a few months ago. It seems to be getting progressively worse. I feel nausea all the time and get migrains. I'm thinking I'm getting contaminated with something, so I started from scratch and went through my supplements, sauces and spices and I did find that some spices were probably contaminated. I also started (gluten-free) raspberry ketones and that did not go well since they seemed to contribute to my stomach pain.  I made an appointment at the Celiac Center at Columbia, but that's not till June.

  I'm also on a tight budget and feel really alone. People don't seem to belive me that this is a real illness or are rude to me when I tell them I have Celiac disease. Checking everything and being paranoid about food all the time makes me feel like a lunatic and sometimes I mess up and get contaminated like I have this week. No one gets my symptoms. My dad has it too, but I can't relate to him. I joined a Celiac support group and the meeting is May 1st, but wow this illness is so alienating and after 4 years it really gets to be a bit much. I don't know how to re-invigorate myself to keep going and maintain my gluten-free diet truly gluten-free.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I suggest starting a food log now, and take it to your appointment. In the interim, you may notice a certain food causes an issue - not unusual for Celiacs to develop another intolerance.

Personally, I've had bad headaches with accompanying nausea this spring. Allergies are terrible here this year and I'm taking so much med I get dehydrated which leads to bad headaches. If I don't take antihistimines I get headaches from the allergies...anyway, just a reminder it may not be gluten but something else. Have you been tested for other autoimmune diseases in the past year?

Ciel121 Apprentice

I suggest starting a food log now, and take it to your appointment. In the interim, you may notice a certain food causes an issue - not unusual for Celiacs to develop another intolerance.

Personally, I've had bad headaches with accompanying nausea this spring. Allergies are terrible here this year and I'm taking so much med I get dehydrated which leads to bad headaches. If I don't take antihistimines I get headaches from the allergies...anyway, just a reminder it may not be gluten but something else. Have you been tested for other autoimmune diseases in the past year?

Thanks so much. Yet I do know that I only get nausea and migrains from gluten although I know the raspberry ketones did upset my stomach, which didn't help. I had allergies before getting a diagnosis, but they are gone now. But I guess I really want to find more Celiac friends. Other people just don't understand. I'm still shocked after 4 years of being gluten-free just how challenging this lifestyle is and it is heartbreaking that I can't go to any restaurants at all with friends and try different foods. Every time I travel it is a disaster and I get sick. On may 1st I will be attending a Celiac  support group with a lecture on how to travel safely--and I'm extremely skeptical that this is possible at all. All I can think about is that the government needs to step in and regulate labeling of foods and restaurants to cater to Celiacs. It's so wrong that we are so isolated over food.

Brandiwine Contributor

I get those symptoms with CC and emotional issues too, I feel lonely and weepy. We could all use good friends through this it is very very stressful and alienating! I can't find any support groups in my area, none if the restaurants in my town are safe and I know no one with this disease, I understand where your coming from... Hang in there and keep coming back to this forum it's the only thing getting me thru right now :-/

Celiac Mindwarp Community Regular

Travel is possible, but does require planning. Lots of us here enjoy travel. At the moment, I take most things with me.

Let us know how you get on at your meeting, and we can help you fill any gaps.

This forum is a great start for finding people who understand. There is always chat going on in what's for dinner tonight chat and ticke me elbow in GAB. We are very friendly :)

Your normal is a lot like our normal. Hanging out here makes me feel I am not alone, whinging or mad, and has made it easier to have confidence in standing up for myself, without needing to argue.

Good luck

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. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,471
    • Most Online (within 30 mins)
      7,748

    731049
    Newest Member
    731049
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.