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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,087
    • Most Online (within 30 mins)
      7,748

    Gaby77
    Newest Member
    Gaby77
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.