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I Feel Like A Hypochondriac


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#1 Coolclimates

 
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Posted 10 September 2010 - 12:59 PM

Just more of a rant than anything, but I'm tired of not feeling well and I've been on the gluten-free diet for 4 months and I'm still just as tired as I always (my major symptom). I just saw my general doctor yesterday and told him that I still wasn't feeling well and he said maybe some of my symptoms were "psychological" and that he couldn't do anything else for me...he was frustrated, and so was I. He said it might be depression that is making me tired. Well, I wouldn't be surprised. I have practically lost my job, am unsure about my future and was also a victim in a recent car accident (and my car was totaled and I have to buy a new one) and have been suffering from post traumatic stress disorder (I was in a horrible train accident 9 years ago) and nightmares, anxiety and poor sleep. I am having to take a nap nearly daily to feel like I can get through the day.
I also saw my sleep doctor in Indy recently (the one who originally got me tested for Celiac) and she said she thinks that I'm doing much better (I've gained some weight, but other than that, no improvement). Easy for her to say! I just feel like no one is taking me seriously in the medical field right now.
Now my mom is getting extremely stressed out and she is normally an optimist. I ask her what's wrong and she said that she's extremely worried about me right now, my job situation, my health, etc. And I can see that my dad is very stressed out, too. I feel like I have caused my parents all this stress and that makes me feel even worse.
I just want to talk with others who can sympathize and not think that this is "all in my head."
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#2 VioletBlue

 
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Posted 10 September 2010 - 01:32 PM

No, it's not all in your head. It never is, but that's the best answer doctors can come up with. They get frustrated and intimidated when they can't "cure" someone with a pill or an operation and they tend to write you off as a head case. They know they can't cure psychological issues so that "diagnosis" lets them off the hook in their minds.

I think you know it's not all in your head. Just as I knew years ago that it wasn't all in my head no matter how many doctors tried to tell me it was. You know your body better than anyone else ever could; you live in it!

It does take some time to feel better. Some people take longer than others. Four months may not be enough time for you, particularly if celiac disease caused anemia or other vitamin deficiencies.

One of the symptoms for me of food allergies is exhaustion. I've weeded out other food allergies that way in addition to gluten intolerance. Could you have other allergies you're not aware of?

You have been through a lot, but one thing I've learned over the last couple years is that everything life throws at me is much much easier to deal with if I'm physically well. One little bit of gluten or soy or citrus and suddenly everything in my life gets blown out of proportion. There's a huge difference for me between how I feel when bad things happen and I'm physically well, and how I feel when bad things happen and I've just been CC'd by gluten.

And I know many others here have heard the "Itís all in your head speech" only later to find out it wasn't. You are not alone; many of us have been through that.




Just more of a rant than anything, but I'm tired of not feeling well and I've been on the gluten-free diet for 4 months and I'm still just as tired as I always (my major symptom). I just saw my general doctor yesterday and told him that I still wasn't feeling well and he said maybe some of my symptoms were "psychological" and that he couldn't do anything else for me...he was frustrated, and so was I. He said it might be depression that is making me tired. Well, I wouldn't be surprised. I have practically lost my job, am unsure about my future and was also a victim in a recent car accident (and my car was totaled and I have to buy a new one) and have been suffering from post traumatic stress disorder (I was in a horrible train accident 9 years ago) and nightmares, anxiety and poor sleep. I am having to take a nap nearly daily to feel like I can get through the day.
I also saw my sleep doctor in Indy recently (the one who originally got me tested for Celiac) and she said she thinks that I'm doing much better (I've gained some weight, but other than that, no improvement). Easy for her to say! I just feel like no one is taking me seriously in the medical field right now.
Now my mom is getting extremely stressed out and she is normally an optimist. I ask her what's wrong and she said that she's extremely worried about me right now, my job situation, my health, etc. And I can see that my dad is very stressed out, too. I feel like I have caused my parents all this stress and that makes me feel even worse.
I just want to talk with others who can sympathize and not think that this is "all in my head."


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"My mother always told me, it's okay to play with a man's mind
as long as you put it back where you got it when you're done with it."

#3 Skylark

 
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Posted 10 September 2010 - 01:37 PM

Ugh. That doesn't sound like any fun. I hope you're getting some psychological help for the PTSD. Not sleeping will make anyone tired and sick-feeling.

It took me a long time gluten-free and I had to take a lot of vitamins to get rid of my psych symptoms.
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#4 ravenwoodglass

 
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Posted 10 September 2010 - 02:27 PM

I have PTSD. I hope your not doing what I did for so many years, ignoring it and hoping it will go away by itself. That doesn't work. If your having nightmares that is disrupting your sleep and that alone will make you not only exhausted but the type of nightmares that come with PTSD and what I call the daymares can raise your fight or flight reactions to a level where they can severely impact your health.
If you are not seeing a good psychiatrist you should be along with perhaps a counselor. I see both. The psychiatrist takes care of my medication, I take alprazolam as needed and the counselor helps me to learn coping mechanisms.
If you have PTSD you need to find the strength to fight it. It's not easy but the fight is well worth it. As my son so aptly put it to me it is not a weakness to seek help with PTSD.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 bluebonnet

 
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Posted 10 September 2010 - 02:56 PM

i was told by my doctor that "perhaps i had a little IBS and a case of hypochondria". that was several years ago ... and i never went back to him. it took me over 13 years to get diagnosed properly. and that was the beginning of this year with enterolab testing and then confirmed with endo in may. for many it takes so much time to get diagnosed you can't help but feel like a hypochondriac. don't give up. find someone to talk to about your ptsd and hang in there doing all you can to stay gluten free. in time, you will heal. best wises. :)
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#6 T.H.

 
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Posted 10 September 2010 - 04:57 PM

So sorry you have to put up with crap like that. :-(

I'd ask this: have they tested you for H. pylori, food allergies, food sensitivities? Are you still on dairy? Any of these can slow down healing, too.

Have you been tested for Crohn's? Or to see if your intestines are healing or if they are still not healing yet?

If not, or if they haven't been testing you for anything else it could be, but you're getting told it could be psychological, then that's a good clue that you need a new doctor if you can get one. :-( They accuse patients of this WAY too much, and more and more of us are having issues like this, where the answer isn't one simple problem, but many.

I was worse after going gluten free, exhausted, nauseous and dizzy, all sorts of fun stuff. I turned out to have allergies to many foods. My reactions were too mild to give me hives, but they were enough to affect me. Keeping a food journal helped me find a couple more foods that make me sick, but I'm fine if I stay away from them. They're not even allergies; they just mess me up. Really weird.

I was lucky enough that my doctor believed me and actually helped me find out what was wrong. I hope that you can find the same!
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T.H.

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21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 butterfl8

 
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Posted 10 September 2010 - 05:03 PM

((((Hugs))))
Not much else to say, just that.
-Daisy
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I haven't got the slightest idea how to change people, but still I keep a long list of prospective candidates just in case I should ever figure it out.
--David Sedaris

#8 Charlie's Girl

 
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Posted 10 September 2010 - 06:06 PM

sending good nrg your way.

i recognize your exhaustion, frustration, and plight.

hope you are feeling better tonight and get the support team/doctors you need. i know the good forum members will be happy to help you figure this out.

your parents love you and they'll be ok when you're ok. it's in their job description to worry. ;)

rumor has it- seriously, ask the long time members- that this does get better and easier.

kind regards.
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#9 Coolclimates

 
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Posted 10 September 2010 - 07:34 PM

Thanks for the support, everyone. It means a lot to me. Some days I just get kind of discouraged, but we all know those days.
Yes, I have gotten extensively tested for about every food allergy that exists, plus stuff like pollen, mold, etc. They all came back negative. So I can rule out any allergies. However, I do wonder if I have other food intolerances (as opposed to allergies) like to dairy, etc. I've been trying very hard to cut out all dairy but I guess I still haven't done the best because I've been eating lots of goat and sheep cheese, thinking that if they aren't from cows, than it's ok. But according to godairyfree.com, goat and sheep products are STILL considered dairy. Bummer. Anyway, if I don't feel any better with the elimination of dairy in a few weeks, I'll probably just forget it. No use torturing myself if that's not the problem. I just hope that I don't have other food intolerances like to corn, soy, etc. I also can't tell if a lot of this fatigue is due to all the stress I've been through lately (and also a symptom of depression) or if it's Celiac. Really frustrating.
Yeah, it seemed like my doctors were willing to help me out to a certain point but once I was diagnosed with Celiac and I haven't been feeling better, they then want to duck out. Like they just give up too soon. It's frustrating. I'm sure you all can relate.
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#10 kareng

 
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Posted 10 September 2010 - 07:43 PM

Sorry you are feeling down. As a mom, I can tell you that it is our right and our privilege to worry about our kids. We feel better if you tell us something we can do. If there is something they can do to be helpful, ask.

Is there something you used to do with your parents as a kid that you really liked? Fish with Dad? Go to the zoo with both? Bowling? Watch I Love Lucy? Bake cookies? You could ask them to do that now ( just gluten-free cookies). It will be fun for you and fun for parents.

I know some people think these things I suggest are silly. I know they do not fix the whole problem. I want to help to fix the attitude or happiness level. When you feel a little better mentally, you can handle other things better.
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#11 Skylark

 
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Posted 10 September 2010 - 07:47 PM

Like you, I suspect some other intolerances but I can't seem to pin the reactions to a particular food. I'm tired all the time and feel like I just haven't recovered from my recent thyroid trouble even though my bloodwork is fine on the new supplement. I'm getting frustrated enough to try the FAILSAFE food chemical intolerance diet. I think I'm going to start tomorrow, but I have to finish weaning myself off my beloved coffee. My last crash-and-burn was after gluten-free dark beer which must have a ton of interesting natural food chemicals in it and the intolerance doesn't seem to be yeast.

Info is here.
http://www.plantpois...ation-diet.aspx

Click the "symptoms" link on the left to see all the stuff they say food chemical intolerances can cause.
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#12 GFinDC

 
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Posted 10 September 2010 - 11:00 PM

Hey, it is very easy/normal to be depressed when you are sick for a long time, if it is from celiac disease or any other disease. And not sleeping enough can wear ya down too.I am just getting past 2 and 1/2 months of sleeping 3.5 to 4 hours a night, or not sleeping at all sometimes. And it does take a toll on your attitude reserves. Or mine anyway. And then I went and glutened myself a couple days ago an d am not sure how yet. So back to bad sleeping again. And I am sure I could do my job better (I think) if I was able to sleep like a regular person. Maybe.

I did much better in some ways right after I went gluten-free. The slowly got worse and worse and miserable and all Woody Allen-ish again. Oy-vey! Eventually I figured out a bunch of my other food intolerances and got them bad foods out of my diet, one or 2 at a time. When I got rid of soy I got a lot better although it took a few weeks to be sure it was really happening. You might be similar, and find one critical food that makes a big difference in your health.

I considered quitting my job since I felt so incompetent not being able to remember things, or concentrate on a task for more than a few seconds. And being grouchy and irritable to boot. But those durn food intolerances can do some awful things to us if we let 'em. Maybe you are one of the few celiacs that doesn't have any other food intolerances but I don't see many people posting that they have only gluten as a problem food.

I gave up dairy 14 years ago when it suddenly started causing me problems. Eventually I learned about celiac disease and gave up gluten also. I definitely missed it at first yet it just isn't so important an issue after a few years. I have tried it a few times recently and do much better with it now. But I still don't eat it because the symptoms build up and get worse. It just isn't worth being sick for it.

Then out went the coffee and tea, and the nightshades, and the garbanzo beans, and the carrots and turnips, What the hey, it is better to feel good and have some energy than to eat some stupid food that you enjoy for a few seconds. It's a minor thing to give up a food in exchange for what it returns in health. You can't even buy medical drugs that will heal your body like getting off your food intolerances does. Abstinance is cheap medicine.

Anyway, this was the general rant up a storm thread right? :-)

Everything is better without xxx and xxx and xxx etc... Find your x's and ditch 'em!
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#13 GFinDC

 
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Posted 12 September 2010 - 10:54 AM

Hi Coolclimates,

You might like this thread. It has recipes for making dairy-free cheeses and milks and gravies. I haven't tried these myself, but several people posted that they really like the recipes. It's long thread but has lots of recipes too.

Dairy Free And Egg Free And Soy Free (except For A Couple) Cheese,
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 gfquestion

 
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Posted 12 September 2010 - 02:44 PM

I can definitely sympathize! I have been going to the Drs for 3 years. After the first year they just gave up saying they don't know what's wrong with me. Then I learned about the gluten thing, tried that and started feeling a little better. I told them about it but when the blood test came back negative, and I was crying in the office when talking about my symptoms, they just wrote it off as psychological and depression. I HATE THAT!!! The thing that troubles me is my health! Not the other way around. I think they are just incompetent and are not very knowledgable about celiac. I am sorry and I hope things look up. Maybe you can get a referral for a celiac specialist who really understands and knows what they are talking about.
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#15 Coolclimates

 
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Posted 12 September 2010 - 07:13 PM

Actually, I'll be seeing a Celiac specialist doctor at the Celiac Center of Chicago in November, so hopefully I can get some of my questions answered or get some relief. I've called the center a few times. The first person I spoke to was really helpful. However, the 2nd time I called, the girl didn't seem to have any answers or knowledge at all. I asked her 2 questions:
1. should I not work in a bakery in danger of inhaling flour and other gluten?
she said she didn't know, but didn't think it was the best idea.

2. when going on the dairy free diet, did sheep and goat cheese count as dairy?
she said she wasn't familiar with this diet and had no idea.

Now, I pretty much have gathered (from previous posts I've written about baking with regular flour) that it can be really harmful if inhaled. But I'm still not sure about the 2nd question, regarding dairy.

I've been trying very hard to go dairy free for the last 2 1/2 weeks, but have been eating goat and sheep products. Maybe I have to cut those out as well? I've never had any stomach problems that some Celiacs have (except for acid reflux), so I'm not sure if it's really necessary for me to cut out dairy or any other major allergen. I also have had allergy tests and all came back negative, including wheat. But what I'm really wondering about is food intolerances, not allergies.
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