Miserable

[jknnej]

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....

[tarnalberry]

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.

[shimma]

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!

[jknnej]

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.

[tarnalberry]

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!

[Guest imsohungry]

((Hug)) I hope you feel better.

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)

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

Many hugs,

Julie

[jenvan]

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...

[KaitiUSA]

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

[Jnkmnky]

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.

[Matilda]

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[Matilda]

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[jknnej]

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....

[shimma]

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.

[Jnkmnky]

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! 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. Just trying it, I mean.

[jmengert]

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.

[Carriefaith]

I would ask your doctor for a lactose intolerance or casien intolerance test. A lot of people have problems with milk, I personally get very bad reactions from it. I don't think the gluten-free diet would hurt you... your body is obviously upset at something... maybe you are still healing, maybe you have other intolerances, maybe you have a virus or bacterial infection that you can't shake like mono or something.

I had the nausea issue for a while after the diet, but it went away after awhile, I think my body was just going through a lot at the time. I do have a weaker stomach now than I used to though

[jknnej]

Thanks, guys. I really would like to do this without meds.

Besides, if I ever did want a baby, you can't be taking anti-depressants.

I did just take half of a Xanax, but I only take those when I'm feeling really terrible, like today. The last time I took half of one was in April!

What I don't want is a drug you have to take EVERY day that you can't go off of without the help of a dr....scary!

An occassional Xanax is OK with me; I have NO adverse side effects from it and it really calms me down.

I am going to call a counselor tomorrow and begin that right away.

I enjoy doing yoga and walking, plus I waterski, but we just moved and I had to find a new gym, so I've been out of yoga for a bit. I took my first class in 2 months on Saturday and I'm glad I'm getting back into it.

It's hard to walk here, even in the evenings; today it is 111 degrees! But we still do sometimes!

I think I am going to try this without drugs-you guys have helped me know that is possible!! Thank you....

[Carriefaith]

today it is 111 degrees

Blow some of that warm weather this way! I'll take it

I also find that exercising helps

[connole1056]

That is not true about being unable to take anti-depressants while pregnant. It's a myth. However, any medication not absolutely necessary can be stopped for the duration. Not all anti-depressants are addictive, or even difficult to stop using. Your doctor should know which ones are appropriate IF you do change your mind and decide to try them. You do seem like you are suffering though.

Have you ever been tested for lupus? If not maybe you should talk with a rheumatologist. You seem to have some symptoms, that is why I ask. If you have fatigue, inflammed or achy joints, arthritis, or hair loss then I suggest you get tested soon.

Another thing that comes to mind is Epstein Barr Disease and Chronic Fatigue Syndrome. Maybe you could research these and see if you think your symptoms fall into any of these categories.

In some instance, one has to be on the gluten-free diet for a long time before seeing improvement. I've heard some people say it took a year!

I truly hope you figure out what is causing you all this pain.

[Emme999]

I think you *really* need to find out more about your potassium levels. It is such an important mineral! Do you like/tolerate bananas? Eat some They are really rich in potassium. Potassium supplements contain 99 mg, but a banana contains 500 mg. (I definitely do not recommend taking lots of potassium supplements - but bananas are good! ) For more info on your need for potassium check out Open Original Shared Link - But don't go crazy with it. My grandpa has been hospitalized for having *too much* potassium and it caused a lot of problems and the detox they made him do was awful.

It enrages me that your doctor was so careless with you when you are having so much pain/frustration I am so sorry that you have to go through this!

Also - those blood pressure levels are not normal!

Another thing you might consider is the candida problem. I know that you've posted about that before and if you have a serious overgrowth, it can manifest through depression, lethargy, nausea, and lots of other fun symptoms.

What is your diet like? Besides not eating gluten, I mean Do you ingest a lot of sugars? Or even a small amount of processed sugars?

I have problems with candida too and know that I would improve significantly if I cut sugar from my diet (and seriously limited fruits). Have you tried that already?

Everyone here has had great ideas - especially about the exercise. That always makes me feel a lot better (particularly weight lifting makes me feel tough! ) Something else that always makes me feel better is going up into the mountains, or to some other majestic and beautiful place. When I see something so breathtaking, it makes me realize that there's so much more beauty than ugliness in the world and life isn't really so bad

I wish you the best!! *hug*

- Michelle

[key]

There are alot of great posts here. I have a few more suggestions. I have been very depressed before too over my children's health. To the point of almost taking antidepressants, but not doing it. I even have them sitting around. Anyway, I will share a few things that helped. I have low blood pressure too and that is low what you mentioned. Make sure you drink Alot of water each day, cut back on caffeine or even eliminate it. If you drink too much caffeine it can cause nausea in some people(it does for me) and also anxiety and irritability. I would also try and walk outside for at least 45 minutes everyday. The gluten free diet is healthy if you are eating healthy food, but if you are snacking on junk or not eating a well balanced diet, then I could see it making you feel worse. I think on this diet you have to focus on getting all the nutrients you did before. I think that eggs have healing properties in them when you are sick, so try and boil some eggs and eat those too. I know some people say they don't agree with them, but I buy the cage free eggs and boil them without the shells. I have been eating a couple 2-3 times a week. I think it has really helped my energy levels. Brown rice is great with black beans. Try eating salads and getting enough protein. Also cut back on sugar if you can. That is sometimes easier said then done. Anyway, these are all just a few suggestions, but I hope you are feeling better soon. Oh yeah, make sure you get enough sleep by going to bed before 10 pm if you can.

Ok, hope you feel better.

MOnica

[jknnej]

Thanks, guys,

I do eat pretty healthy; not really much junk. I have a few cookies here and there but that's about it!

I don't have the symptoms of Lupus that you mentioned...I've checked into Fibromyalgia but don't have all the symptoms for diagnosis...Chronic Fatigue or Epstein Barr? Maybe..but I'm not so tired that I'm dragging all of the time. My energy levels are pretty decent.

I love bananas and have been eating more lately. Oh and I don't do caffeine. Except when I eat a chocolate chip cookie! I don't drink coffee at all or any soda with caffeine.

I always get at least 8 hours of sleep...this is the problem. I do all of the things I'm supposed to do to take good care of myself but still feel crappy. That's why I think there is something else going on that the dr.s aren't finding.

I am going off the pill next month b/c a nurse friend of mine says after 11 years on it it could be making me feel really terrible, too. She recommended I take Genisoy and swears it totally helps her sister, who had really bad periods and also had to go off the pill.

I guess I just need to hang in there-but I still don't get the blood pressure thing. Mine seems to fluctuate so much lately-it can't be right. A week ago at the dr. it was 120/80...all of a sudden yesterday it was 82/60? I don't get it.

I did look it up on the net at WebMD and it did say that 90/60 was considered normal. But, that's not normal for me. My dr. said my pulse was fine so that's what mattered?????

Anyway I appreciate your help and knowing you're here to talk when I need it..I"m trying to hang in there!!!

Jenn

[jenvan]

Jenn-

Sorry for how you feel... There is a lot of good ideas in this post for you. The only other thing I could think of, hypoglycemia ? Did anyone mention that? It can make you shaky and anxious for sure, and for some--depressed. I have quite a few friends who have battled with depression...for most of them the meds have not helped. I have one friend who has been on lexapro for a while, and now faces a fearful period of going off the meds. He has chosen to go off of them because he is tired of how they numb his emotions, and he is longing to feel again. Do you have close friends or family who care for you well? Have you ever considered going to an informal counselor to talk things through when its get really bad?? Just a few more ideas... Good luck to ya girl !

[Guest BellyTimber]

hI, JKNNEJ, I'm two & a half years in and although for me the nausea has dramatically disappeared of late almost every day I have three or half a dozen from a very wide range of symptoms.

I had a more or less similar experience to you about tests and diagnoses, and found that that didn't help my mind-body continuum and consensus about what I was going through & what I should do about it.

My acute abdominal symptoms followed on a family (of origin) trauma and a task at work that caused me strain and were followed by two home moves - the second in traumatic circumstances.

Of late I feel good about having stood up for myself, startingnew duties at work and having had friends help me improve my home. Also making nice food for myself and having nice simple food out.

Hoping things work out better & better for you ...

[2old4]

Yes I do get dizzy and nauseated, plus a "shaky" feeling on the inside.

Jenn- These were symptoms that I experienced also, and my doctor prescribed an anti-depressant along with counseling. It was definitely the answer for me. I took a low dosage and it was enough to really help and quite frankly, I had wished I had taken something long before. Now I realize that everyone is different and maybe you should try other things first, but just a positive experience to remember if you need to go that way. Take care- Patty