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Exasperated By Daily Nausea And Migrains


Ciel121

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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.


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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

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      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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      That’s really frustrating, I’m sorry you went through that. High fiber can definitely cause sudden stomach issues, especially if your body isn’t used to it yet, but accidental gluten exposure can feel similar. Keeping a simple food/symptom journal and introducing new foods one at a time can really help you spot patterns. You’re already doing the right things with cleaning and separating baking—also watch shared toasters, cutting boards, and labels like “may contain.”
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