30 replies to this topic

[shimma]

Hi everyone. I was diagnosed last June and I've been gluten-free (hopefully) since then. I know I've accidentally ingested gluten from time to time, but haven't done it intentionally. I'm finally starting to feel that my diet is under control. My main problem is that for the last two years or so, when my symptoms (mostly diarrhea and cramping) started to get really bad, I started getting really nervous about being around people, mostly because I knew that I would need to run to the bathroom at really inconvenient times. At the height of my symptoms, I was going 6 or 7 times a day, and the more I worried about having to go, the worse it got! Soon I was avoiding meetings with my boss and colleagues for fear that in the middle of it, I would have to run to the bathroom, or I would be afraid that my intestines would start to make horrible sounds. When I was forced to be in those types of situations, I would get so panicky that I would start to sweat and feel really sick. I thought that I would feel more normal once my body started to recover, and although I still have diarrhea sometimes, my symptoms are gradually improving. But the social anxiety is still present. Right now I'm unemployed, and I'm dreading starting another job because I don't want the same phobia to pop up again. Does anyone else have this problem? I feel like I have no control over my own mind and body sometimes. I need to figure out how to get past this so I can live a normal life again. Thanks for your input.

[SteveW]

Shimma
You are not alone. I experienced the same symptoms for the past 5 years.
I've been gluten-free to the best of my knowledge for almost 2 months; my stomach pain cramping and other symptoms seem to be going away. But I still have strong BM urges when driving somewhere or being in a public place where I fear that I may need to go quickly. I find that I'm isolating myself more and more, it’s the toughest symptom I'm dealing with. All the stress is exhausting and I'm a little depressed about it. I though that when I went gluten-free that the urgent need to go to the bathroom would go away.
I talked to my Doc about it and he feels it's anxiety and want's me to try Paxil. I'm not to keen on that idea.
I know what you saying about not having control over your own mind-I feel the same way.
-I'm not sure about you but I've had a lot of "Close calls" over the past 5 years and that’s kept me on edge for a long time. So I guess it’s understandable that we still have these symptoms. Our think our minds are still trying to protect us for a threat that is no longer there.

I wish I had an answer but I'm still looking.
Steve

[seeking_wholeness]

shimma and SteveW,

It must be SO frustrating and disheartening to be constantly worried that you will embarrass yourself beyond belief whenever you are in a public place! I am so grateful that my symptoms never got to that point (although I have lost control at home a couple of times!). A thought just occurred to me, though: are you still eating dairy products? Casein (one of the proteins in milk) is very similar in structure to gluten, and some celiacs' bodies apparently cannot tell the difference between the two! I wonder what would happen if you cut dairy products completely out of your diet for a month or so. If your symptoms improve, you could try eating SMALL amounts of dairy again, but if the symptoms start to return you should probably go dairy-free permanently. I still miss cheese and sheep's yogurt, but I know that dairy is NOT my friend! I hope you quickly discover the cause of your troubles so you can begin to reclaim your lives!

[SteveW]

I'm pretty much dairy free.Had some plane Stonyfield yougert last week that didn't bother me but I've been avoiding all other dairy.
I'm still learning about what foods bother me and what dosen't so food is to blame somtimes.
But I know a lot has to do with stress and anxiety.I'm always pariniod about the food I eat and it's like I'm waiting for some bad reaction.I'm finding it difficult to get my mind off of it.
Steve

[shimma]

I went off dairy for a while, and didn't find any improvement. I'm very mistrustful of food though. Although I thought I was gluten-free for months, I think I was accidentally dosing myself by eating in restaurants (which I absolutely don't trust at all anymore and avoid like the plague!) and suspicious flours. I've started avoiding the rice and tapioca flours you find in Chinese or Indian markets because I don't know how they're manufactured and they could be why I was still having symptoms even though I was trying to be gluten-free. SOO....was I having symptoms because of accidental contamination, or because of dairy? Who knows? I should try cutting back dairy again now that I'm being super strict, but it's hard because I'm such a cereal addict (and there's a couple of really good gluten-free cereals out there! And I just can't get into soy milk). Cereal's one of the few things that really satisfies my carb cravings.

I know that my social problems are caused mainly by stress. Ever since I started college back in 96, whenever I had a test, I would always have diarrhea that morning and often right before the test as well. I always blamed it on nerves. My bowels didn't bother me at other times until my symptoms started to get really bad, and then I was stressed all the time and the BMs just got worse (what a vicious cycle.....nervous about having to go, and then having to go making the stress even worse!) So even if my symptoms clear up entirely when my body is healed, I think it'll take a long time to get over the stress and anxiety of wondering whether I'm going to have to go at an inconvenient time. I used to be able to forget about it and go later when it was convenient, but I can't do that anymore. I just get obsessed about it...and holding it gets incredibly uncomfortable.

Anyway, it really helps to tell this to you guys and hear that there are others having similar problems. Thanks for your input.

[MySuicidalTurtle]

Hello. I know exactly what you and everyone else is saying. I have such awful anxiety. Before I couldn't even got to the grocery five minutes away with out freaking out. I get nervous and panicy and feel like a total nutter. My doctor offered to give me on some anti-axiety medicine and it helps a lot. I also go to a therapist to help me deal with knowing it is okay to go out and do things. I am in college and some days I can't sit in class and pay attention; I just count the miutes down and just want to get out of there. With the medicine now I can sit, pay attention, learn, and even participate. When I have the days of being sick and feeling bad it makes me really nervous and the anxiety is bad but it isn't near as bad as it was before the medicine and therapy. My doctors told me it will take awhile to feel better about going out and being in class but that I won't always feel this nutty. I hope they are right because I hate feeling the way I do before anything or just sitting in class. It is always good to see that I am not the onyl one who suffers the anxiety so just remember that you are not alone, too! My only advice is seeing your doctor and talking about it and going to a therapist; it is helping me.


Kristina

[soul04]

I, too, know exactly what everyone is saying. I've been suffering from celiac disease symptoms for about five years, starting a few months into college. I always thought that the symptoms were a result of nerves, but now I know that they are a result of celiac disease. I wonder how many other people out there have come to or need to come to that realization. I'm happy to be in a group of understanding people. Thank you

Now the trick is trying to rewire my brain to function without the pain. I've been thinking about possible solutions. I'd rather not take any chemicals as I try to only ingest natural and wholesome foods. But maybe I should reconsider..? I'm also wary about seeing a therapist. But maybe I should reconsider..? I'm also interested in yoga and meditation. Does anyone have any experience in these things?

[lauderdalehawk44]

I actually just found out I might be suffering from celiac disease, but about a year ago I had fainted in my college classroom and the only explanation that the doctors had was that my liver enzymes were a little high could and thats what caused it. The only symptoms of celiac disease I had were sever stomach pain and I would be terrifed to go out for fear that I would be in so much pain or that I would faint. I feel a little bit better about going out now actually knowing what is wrong and that im fixing my problems. The best thing to do is just take it slow do what you feel your comfortbale with and something you enjoy. good luck!!

[midnightjewel40]

Hi all
i know what you all are going through
i have been gluten-free for 14 months but have had the symptoms for about 20+ years was very sick now i just like to stay at home and dont go out much i have my quilting to do but i find the problem is food when i go out i have to take it with me i just cant meet someone at the coffee shop and say yeah lets have a big fat cream cake heheheheheheheheheheheheheheh i do meet them for coffee but thats it then they wont eat anythng because they dont want to upset me (which doesnt worry me really as i know what it will do to me and the pain well lets not go there)
i too have the bowel problem and i just carry a spare pare of undies just in case (never had to use them but........) hope this is helpful to everyone and love to hear more of your input to the room just wish we had a chat room that we all could chat at once
jacque

[midnightjewel40]

Hi all
i know what you all are going through
i have been gluten-free for 14 months but have had the symptoms for about 20+ years was very sick now i just like to stay at home and dont go out much i have my quilting to do but i find the problem is food when i go out i have to take it with me i just cant meet someone at the coffee shop and say yeah lets have a big fat cream cake heheheheheheheheheheheheheheh i do meet them for coffee but thats it then they wont eat anythng because they dont want to upset me (which doesnt worry me really as i know what it will do to me and the pain well lets not go there)
i too have the bowel problem and i just carry a spare pare of undies just in case (never had to use them but........) hope this is helpful to everyone and love to hear more of your input to the room just wish we had a chat room that we all could chat at once
jacque

[YankeeDB]

Addressing Soul04 in particular:

I work in psychiatric research and also take a low dose of Prozac and am a great believer in psychotropic medications. I checked with my pharmacy to ensure the medication is gluten free. I know there are lots of people who prefer not to take psychotropic meds but as time goes on, their effectiveness continues to be proven and people are more accepting. Actually, the best/fastest treatment for depression is usually a combination of medication and therapy but either by itself will work, more often than not.

Another thing to consider if you don't want to take medications is light therapy. Do a search on SAD (seasonal affective disorder) for more info. Some researchers are finding light therapy can be used all year round. I also use this and find it worthwhile as do two of my friends. Lots of research backs this up.

As far as the "natural" vs "synthetic" issue, I think there are many natural substances that are poisons (such as gluten, for celiacs!) and many synthetic ones that are beneficial when they are called for (antibiotics, e.g.).

I know that sometimes depression can be secondary to physical illness (like celiac disease with its myriad puzzling symptoms) but sometimes it exists as its own entity. It is the most common psychiatric illness. The good news is that treatments are extremely effective.

I've also done yoga and meditation in the past and these are very worthwhile particularly if you feel anxious. If these things attract you, it's definitely worth looking into. Exercise of most types can help in many mood disorders.

Best wishes!

[midnightjewel40]

Hi shar4
it is fantastic that you feel so good about yourself now but the tablets are helping you dont go off them you need them for a while at least i made the mistake of going off them and now i am regretting it i am actually going back to the doctors to go back on them
let me know how you are going and hope things are great for you and yankeedb thanks for the info i like to gather as much as i can get (info that is )
jacque