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Miserable


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46 replies to this topic

#1 jknnej

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Posted 20 June 2005 - 09:18 AM

I am miserable these days. I haven't felt good in six months, since I started the gluten-free diet.
Most of you say you got better on this diet; I have gotten worse. My anxiety, my stress, constant nausea and shakiness, restlessness, etc.
The doctors cannot find out what is wrong with me. Today they said my blood pressure is 82/60 and that is normal. My potassium level was a little low but only 3.4 where 3.5 is normal so they said that's OK, too.
They gave me Effexor for anxiety but I can't take it because he told me I will feel crappy for a while as I get used to it. I can't do it. I already feel crappy enough; if I get any worse I will never leave the house.
I am at a loss for what to do...I am miserable and none of these dr's can tell me what is up.
Before I went gluten-free I had more bloating and cramping but never felt this bad. I don't think this diet is good for me. I don't know what else to do. My endo was negative for celiac disease and my bloodwork weak. Maybe I should go back to gluten to get another endo. That way if I don't have celiac disease I can get off this diet. I don't know. I don't think I'd ever go back to as much wheat as I ate before but at least I felt normal. Somehow, in some way, this diet is hurting my health. I can feel it. My body is being deprived of something. I take vitamins, probiotics, I don't know what else to do....
any advice would be appreciated....
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#2 tarnalberry

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Posted 20 June 2005 - 09:31 AM

Have you tried identifying other food intolerances? You say you did see some improvement in some symptoms going gluten-free, so the change in diet likely made a difference, but not feeling well is a problem!

You might want to see if dairy is giving you a problem (it gives me similar problems to gluten) or soy or other foods.

BTW, that does NOT sound like normal blood pressure. Did you mean normal for you, or your doctor didn't want to treat it? If the later, PLEASE get a second opinion.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 shimma

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Posted 20 June 2005 - 10:02 AM

Is it possible to identify a core group of foods that are ok for you? Maybe you should cut everything else out for a week and see how you feel.

If you have no idea where to start, I would suggest going really basic, i.e. just eggs (if you tolerate them), plain meat, cooked fruits and veggies for a few days (cooked ones are easier to digest). Your body may be reacting to a lot of things at once and you may have a hard time figuring out what. When your gut is stressed out, things that wouldn't normally be a problem can be a problem (for me, that seems to be anything with starch or processed sugar). I have some idea of what you're going through, because going gluten-free didn't help me much, and I've been gluten-free for two years. Right now I am on a really basic diet (it's called the Specific Carbohydrate Diet; read our posts in the Diet and Weight-Loss section if you'd like) - I am doing better so far, although I still have a ways to go.

I think what's important is feeling in control. If you can narrow down what you're eating and keep a diary to see how it goes, maybe that will help.

I hope you feel better soon!
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#4 jknnej

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Posted 20 June 2005 - 10:39 AM

82/60 is NOT normal for me and I asked both the nurse and dr and they both said it was fine.???
I've done food allergy testing and all came back normal...even the things I am slightly allergic to are not testing high-meaning they don't give me a reaction.
I am so depressed right now due to the constant illness, but I don't even want to take depression medicine b/c I think A, it will make me feel worse and B, I don't want to have to get off it later.
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#5 tarnalberry

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Posted 20 June 2005 - 10:51 AM

Food allergy testing won't necessarily find food intolerances. (IgG intolerances aren't picked up by IgE testing.) Can you give us more information on the testing you did have?

Alternatively, sometimes testing just isn't sufficient, and you have to try an elimination diet (that's how I found out about dairy).

But yeah... if you told the doc that your BP wasn't normal for you and he/she ignored it, ... crappy doc!
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

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Posted 20 June 2005 - 10:52 AM

((Hug)) I hope you feel better. :wub:

I, even still, have some of the same symptoms you are describing (and have all my life). I have chronically low potassium, low blood pressure, and low temperature. Are you dizzy? Are you well hydrated? I ask because often, when I end up in the hospital or at the ER, I find my BP spikes and dips and makes me dizzy and nauseated...particularly if I've allowed myself to get dehydrated (which is always by accident, I've got multiple autoimmune issues and it doesn't take much to "dry me out"...so to speak) :rolleyes:

I hope you feel better. I'm sorry I can't offer more help. :(

Many hugs,
Julie :)
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#7 jenvan

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Posted 20 June 2005 - 11:31 AM

I ditto was Tiffany asked--was your food allergy panel testing with IgE or IgG? My "classic" allergy panel came back normal across the board, for wheat and barley etc too (b/c IgE is a different indicator). But I just got my IgG panel back, and it basically says I have a food intolerance to everything! Perhaps you had the wrong panel done?

I hope you feel better soon...
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#8 KaitiUSA

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Posted 20 June 2005 - 12:00 PM

I hope you get feeling better soon.
As for blood pressure....my moms can run really low like usually hers is somewhere near 86/56 or 90's/60's.....mine usually runs around that too. So it can be normal but if it's not normal for you then your doctor should be investigating into what could be causing that.

I would definitely look on if you are getting enough water...that can cause nausea,dizziness, etc. Most likely there is something else that is a problem but even if that can help ease the symptoms that would be good.


I agree with what Jen and Tiffany said...the testing is different with IgG and IgE...maybe there is a possibility you had a different panel done then what should have been.

Have you kept a food journal at all? Do you feel worse after certain foods or after you eat?

Could any meds you are taking be causing these side effects?

Hang in there :D
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#9 Jnkmnky

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Posted 20 June 2005 - 12:15 PM

Do you get any exercise? After my third baby, I was depressed. I began lifting weights (to prove to my sister that it wouldn't help) just five pound weights by hand and 2 pound weights on my ankles, and I was soooooooooooo out of shape due to pregnancy, that I could only manage 10 minutes of this the first day, but by the third day...I felt a little better. The duration I could lift increased quickly and I was doing the lifting 20 in the morn and 20 mins at night by the end of the week. I slept better by the end of the week and I was just lighter feeling emotionally.

I highly recommend weights NOT aerobic exercise for depression. I know everyone's different, but what would it hurt to try lifting a few weights for a week? Nothing heavy and not for a loooooong time so that you're in agony the next day. But, you may still hurt a bit. If nothing else, I really think your mind will feel clearer. It sounds like you don't have control over your body so you're letting your body dictate your mental health along with your physical health. Life isn't perfect, but there are plenty of physically disabled and sick people out there who are emotionally healthy despite their physical problems. The two do NOT have to go together. Don't be so down. You'll figure out what's wrong and feel better soon. You're certainly making an effort to figure it all out.
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#10 Matilda

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Posted 20 June 2005 - 01:17 PM

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#11 Matilda

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Posted 20 June 2005 - 01:44 PM

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#12 jknnej

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Posted 20 June 2005 - 03:47 PM

Hi all,
Thanks for your nice responses. It makes me feel better having this support system.
I wondered today if maybe the nurse took my blood pressure wrong?
Yes I do get dizzy and nauseated, plus a "shaky" feeling on the inside.
I have crazy dreams and sometimes feel this weird morbidness; I can't explain it.
Lately I can't watch anything the least bit gory on TV or anything like that.
My potassium was low but dr. said not low enough to do anything about.
I know I would probably benefit from anti-anxiety/anti-depression meds but isn't there another way? I plan on starting a therapist soon..I guess my question is can I do it without drugs? I really would like to....
I liked the post about not letting your health affect your mental health. This is where I need the most help!
I just really don't want to take drugs..as much as they have helped others I feel it would make my situation worse..(if that's possible..)
I just think taking mind altering drugs will give me a lot of side effects and I will rely on them too much.
I wish a dr. would get to the bottom of this.Does it seem normal that even though my dr. knows I am always feeling crappy he still has not done a hormone test or a vitamin test? Is that odd?
My food allergry tests were ImmunoLab. I don't think I could talk my hubby into another set..those cost $300 and didn't tell us much.
My bloodwork for Celiac was not totally positive..only the antigliadin IgG was elevated and they say that is the test that is only 20% postive for Celiac.
I'm at a loss...
do you think I can get through the anxiety and depression without meds? I have a lot less anxiety when I'm healthy and am rarely depressed when healthy as well....
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#13 shimma

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Posted 20 June 2005 - 04:17 PM

I agree about the exercise. I was hesitant to get back to the gym because I do NOT need to burn more calories - I need to store more! But I feel so much better when I work out - both physically and emotionally. If you can find an activity that you really enjoy, even better.
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#14 Jnkmnky

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Posted 20 June 2005 - 04:21 PM

I got through my depression without meds, and I was really depressed after that last baby. For almost a year before I tried exercise. I had my hormones checked and they were "fine". PFT! :blink: I also walked a lot. Summer's good for that! But I did walk A LOT. Like Jared from Subway! ;) I remember the day I felt the sun shining on my face and I thought the depression was actually lifting from me at that moment. I didn't know how depressed I was until it actually all went away. I have lots of friends on anti depressants and I know none of them tried exercise before going on the medication. I can't understand why not. :huh: Just trying it, I mean.
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#15 jmengert

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Posted 20 June 2005 - 05:22 PM

About the anxiety thing....I have some pretty severe anxiety issues and also have struggled with depression. Being diagnosed with Celiac kicked it into high gear again, compounded with me still being sick after being gluten-free for six months, so I empathize with you in that aspect. I am currently seeing a counselor and am beginning to feel better to some degree. I am very anti-medication, so I fully feel that you can get better without meds, as long as you have a good counselor who is good with behavioral modification/cognitive psychology (and who doesn't rely on drugs as a "quick fix," and I've seen a few counselors who really push the meds).

Good luck, and I really, really hope you begin to feel better soon.
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*Julie*
Gluten free since December 2004
Soy free since June 2005
Dairy free since July 2006


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