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Can't Take This Anymore


Kody

Recommended Posts

elonwy Enthusiast

I got the cold hands and feet and frequent urination from gluten. The thing about MS, is its not a definitive diagnosis the way the gluten intolerant/celiac test is. Its not a blood test, its a series of tests and hypothesis. So you should wait till you've been gluten free for a while to test for it, to see what symptoms go away. One of the critirea for diagnosing MS is that there not be something else that could be causing the problems. My mom went round in circles with the doctors on this, they diagnosed her with MS, took it back, then said "oh maybe". Turns out she's got celiac disease. That being said, I know a few people with MS, its totally managable, but Celiac disease would be my choice if I had to pick one.

I hope you feel better soon. I was giving up on life at 27, its much much better now.


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Devon Newbie

did you have the kind of symptoms that I have though? freezing hands and feet included? did you do the crazy poop I mentioned in my first post? dude it's eating my alive.

I did have a lot of the symptoms you mentioned, some of them go away when I am completley gluten free though. Some are a result of my Fibromyalgia. The nasty poops and constipation are completely gone if I stay gluten free. I also get cold hands and feet, but never thought to link it to my gluten intolerance - I have no other explanation for it though ;) I can't figure out if being exhausted is from Fibro or gluten, or maybe it's from both - but when I was working full time I felt like a walking zombie. I also get pains in my arms, legs, and chest, but when I exercise and stay gluten free the pain is lessoned quite a bit. When I slip up with my gluten free diet, I can get really depressed and moody. Seriuosly, when comlpetley gluten free I'm like a different person physically and mentally.

Yenni Enthusiast

The spring I first got sick, when it all started... I turned in to a totally different person. Besides all of the stomach problems I couldn't remember my own phone number. I was constantly super tired. Couldn't do my job. I had to quit. (I worked as a nurse so I couldn't make any mistakes-I also hated the job.)

I couldn't remember things my husband and I had done, movies we had watched, things we had talked about. I kept on asking the same questions because I couldn't remember what he had answered.

It was creepy. I felt like I turned 65 that year, when I actually turned 28... I felt I had gotten Alzheimer’s.

I had cold hands and feet. Some times you can get that just out of being so tired and stressed.

I have been in this fog for 4,5 years now. It actually has come and gone some and I can remember my own phone number now, but the memory is still bad. I am still tired and that comes and goes too.

I felt I used to be stuck in "how things are supposed to be". How one is supposed to lead ones life. The invisible rules of society. I have dropped that now. I don't think you should even think twice about doing things to take better care of yourself. Go to Mexico! ;) Take the time you need. The rest/life can wait. It will still be there later. If you still want it.

Susanna Newbie

Kody--Sorry you are having such a rough time. I don't think you're crazy to consider a sabbatical (Mexico or otherwise) to attend to your health. I said something similar to this in another thread, but I think when you get birthed into a new phase of your life, as you certainly just have, it's fitting to treat yourself like a newborn babe--rest, sleep, nurture yourself, let others do for you. It will be tough to postpone your college plans, but sounds like your brain fog is so bad, you can't possibly be getting much learning out of your classes anyway. And, pilot training? Maybe this isn't the time in your life to be flying planes. I agree with the others here: quit your job--your health can't afford it. And, take that sabbatical, so you can get better and be the best you you can be. It may take months to feel better--I still had lots of intestinal complaints/discomfort/erratic bowel habits for like 3 months after I went gluten free, but it was so worth it, because after that, I not only felt better in my GI tract, I felt more energetic and mentally sharper.

Good luck.

eleep Enthusiast

A sabbatical is an excellent idea -- and not something everyone gets the chance to do. It took me many months to start to feel right again and I definitely felt worse a month after I stopped eating gluten than I did before. I went through about six weeks where I really couldn't do much of anything -- the advantage I had was that I'm in graduate school and was supposed to be getting some writing done -- I actually had to toss a lot of that work recently because it was so bad -- the brain fog had really made things terrible for me.

In any case -- you will get better and giving yourself permission to rest is a very good idea. I'm not so good at enforced "rest" myself -- but I finally saw things turn around dramatically after I did a whole course of acupuncture.

If someone had given me the opportunity to go to Mexico, I would have jumped at the chance -- as it was, I didn't have a whole lot of travel options open to me!

eleep

Rachel--24 Collaborator

Kody,

If insurance pays for your tests than why not get tested for whatever you can?? That was my thinking. I have gluten intolerance (non-celiac) and I still had many problems. Brainfog was just one of them. I got tested for MS over 3 years ago and it wasnt that. I had all kinds of tests for all kinds of diseases but nothing ever showed up. All my tests came back perfect.

Last month I finally got diagnosed. One Dr. finally figured it out after only seeing me for about 10 minutes. He said I needed to be tested for Lyme Disease. He drew blood that day and it was positive.

One very common symptom of Lyme is brainfog....getting lost while driving, short-term memory loss, lack of concentration, etc.

When someone is still strugling with health problems and things arent improving I feel like we shouldnt put all our eggs in one basket. Keep testing. There may be more than one diagnosis to be made. Its not always that gluten intolerance or Celiac is the only answer. I say if you arent getting your health back keep searching until you get the correct diagnosis. I was never giving up because I knew eventually there would be a diagnosis. It took 4 years to get it though.

Testing for Lyme is really unreliable although one lab in CA is far more sensitive in picking up Lyme when most other labs are missing it. Fortunately for me my Dr. is aware of this and only uses Igenix lab for Lyme testing. I think if I'd been tested elsewhere it would have come back negative and I still wouldnt know.

Open Original Shared Link

rinne Apprentice
What do you guys think... I want to make sure I'm not going crazy, which I think I am.

I seriously know how that feels. :( You are not going crazy, you are ill and you need to be taken care of, you are right that you shouldn't be driving.

This summer while riding my bike I drove straight into a telephone pole, one moment it was 15 feet ahead of me on the left and in the next breath I saw it 5 feet in front of me and I knew I was going to hit it. I did. Now if anyone, and I was at a major intersection and there was a lot of traffic <_< , was watching me it would have appeared to them that I turned and drove straight into that telephone pole. :lol: My first thought when I stood up was, "who's in charge here?" and I knew it wasn't me. I knew in that moment that I was in serious trouble.

I think that is what your body is trying to tell you with the all the feelings it is pushing up is that you are in trouble and you need real help. It sounds like there are so many things going on that it is impossible to read the source of the problems in an internet chat room. :) Yes, it could just be Celiac and your work, it could be Celiac and other problems, did you say that you have Fibro or am I confused? The stress of just being in an environment that asks so much of you is quite likely also contributing to your ill health. It could also be Lyme, you reminded me of myself when you said, "I can live with the pain". I've been in pain for years but it wasn't until I felt like I was losing my mind that I got scared. I understood then how important it was to focus on it while I was still capable of focussing.

I'm no doctor but here is my advice, if you haven't told your mom everything you've shared here - tell her, then find a way to live very simply, eat unprocessed and organic food, Mexico may be the place, and every day do something that brings joy into your whole being. Do this for six months and during that time use that get to know your body, take up yoga or tai chi or ..... and at the end of the six months evaluate how you feel.

We are all well trained to know obligation but obligation to what? And if we sacrifice our health to that obligation how will we ever take care of ourselves, let alone meet future obligations that we may want to take on?

By the way, the feelings of going crazy are a Lyme symptom.

P.S. If you can do the testing Rachel talked about then do it first.


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Kody Rookie
Kody,

If insurance pays for your tests than why not get tested for whatever you can?? That was my thinking. I have gluten intolerance (non-celiac) and I still had many problems. Brainfog was just one of them. I got tested for MS over 3 years ago and it wasnt that. I had all kinds of tests for all kinds of diseases but nothing ever showed up. All my tests came back perfect.

Last month I finally got diagnosed. One Dr. finally figured it out after only seeing me for about 10 minutes. He said I needed to be tested for Lyme Disease. He drew blood that day and it was positive.

One very common symptom of Lyme is brainfog....getting lost while driving, short-term memory loss, lack of concentration, etc.

When someone is still strugling with health problems and things arent improving I feel like we shouldnt put all our eggs in one basket. Keep testing. There may be more than one diagnosis to be made. Its not always that gluten intolerance or Celiac is the only answer. I say if you arent getting your health back keep searching until you get the correct diagnosis. I was never giving up because I knew eventually there would be a diagnosis. It took 4 years to get it though.

Testing for Lyme is really unreliable although one lab in CA is far more sensitive in picking up Lyme when most other labs are missing it. Fortunately for me my Dr. is aware of this and only uses Igenix lab for Lyme testing. I think if I'd been tested elsewhere it would have come back negative and I still wouldnt know.

Open Original Shared Link

I don't have lyme's disease... I think it's other allergies and Celiac or just Celiac.

MS could be a possibility... but I don't know.

Thanks so much tho guys. It means a lot to me. I'll likely be going to Mexico for a while, but it might not be for another month.

MistressIsis Apprentice

but is frequent urination, freezing hands and feet part of Celiac? can it be?

I had the same thing for years!!! every 20 minutes or so I'd have to urinate. My hands & feet were always super cold & tingly. You HAVE to get out of the pizza place!! It's a health risk at this point.

Definitly go to Mexico, I went for 2 weeks last year & a week this year & it was awesome. However do not eat hamburgers unless you buy the meat yourself or are 100% sure it's handpacked. Most burgers there are pre-made patties. Found that out the hard way

rinne Apprentice
I don't have lyme's disease... I think it's other allergies and Celiac or just Celiac.

That's great that you don't have Lyme disease, may I ask how you know that?

Your talking about Mexico has made it seem like a very good idea, I may just have to spend a little time there myself in January. Thanks. :)

ravenwoodglass Mentor

Hi, I was thought to have MS for a long time. I got to the point where I could not walk unaided, often dropped things I was holding, at one point I had difficulty even starting my car. I would get in and not remember how to start it. I would have the key in my hand and not know what to do with it. I had to drive by using my hands to move my legs from gas to brake, talk about dangerous but with daily explosive D and no bowel or bladder control I couldn't give up driving.

The doctors did many tests for MS, I had a spinal tap, not fun but the pain really started the next day, MRI's and electromylograms where they stick needles in your muscles the produce a current and measure the muscles reaction. They were never able to give me an absolute diagnosis and I am glad they did remain iffy on it because I might have accepted that as well as the IBS, migraine, fibro and cfs that they diagnosed and I would now be dead.

I still have a bit of neuro damage because the celiac was NEVER looked for in 15 years of progressive illness escept with a blood test that for me was useless, but everything was gluten related. IMHO you should give yourself a good six months on a strict diet avoiding all CC before you go through everything they will put you through for the MS diagnosis. Be as strict as you can, nonfood sources included. For many of us the neuro symptoms are slow to resolve especially if you are not very strict.

I hope things improve for you soon.

Creative-Soul Newbie
I felt I used to be stuck in "how things are supposed to be". How one is supposed to lead ones life. The invisible rules of society. I have dropped that now. I don't think you should even think twice about doing things to take better care of yourself. Go to Mexico! ;) Take the time you need. The rest/life can wait. It will still be there later. If you still want it.

Kody,

I couldn't have said the above any better. Trust me, your health comes first!!! I too went through the whole brain fog thing, and much worse. Since my very early teens I became severely depressed, anxious, and had horrible panic attacks, and had my first breakdown at the ripe old age of 17 yrs. My depression was labelled by my mom as just teenage angst, but looking back now I know she was just in denial. Then, as in the middle of my college experience, I want from a straight "A" student to not knowing what the hell I just finished reading a few seconds ago. I'd be sitting doing something and find myself sitting frozen in the same position 5 hours later not having moved and having no recollection of anything that transpired in that time...

I developed agoraphobia as well. For a period of time I had to go on meds as I just knew I was loosing my mind and steadily becoming so suicidal that I actually 'began' to try to end it all a few times; it felt like someone else was taking over my body. But I tried to stick school out because I felt it was what I had to do, I'd disappoint my mom, etc, etc. So many of my friends who started school after me graduated before me, and many of them where people that I'd helped and encouraged along the way (I was working in my school's admissions office)! So I felt like major (insert whatever comes to mind here).

About 2 years ago I came to my senses...it ain't working, hon! ;) Soon afterwards I realised/was diagnosed with Celiac and went gluten-free. Man, what a difference! Like night and day. Part of me wishes I'd taken time off from school sooner. You've got to take whatever time you have to for yourself, or you'll just make things worse. I'm still out of school at this point, but now for the first time ever I feel like I'm actually LIVING, man, and that makes everything worth it!!! All the best to you, and keep us up-to-date on how you're doing. You will get through this!!!

Kody Rookie
That's great that you don't have Lyme disease, may I ask how you know that?

Your talking about Mexico has made it seem like a very good idea, I may just have to spend a little time there myself in January. Thanks. :)

Because I don't have any bug bites or rashes or anything? <_<

Kody,

I couldn't have said the above any better. Trust me, your health comes first!!! I too went through the whole brain fog thing, and much worse. Since my very early teens I became severely depressed, anxious, and had horrible panic attacks, and had my first breakdown at the ripe old age of 17 yrs. My depression was labelled by my mom as just teenage angst, but looking back now I know she was just in denial. Then, as in the middle of my college experience, I want from a straight "A" student to not knowing what the hell I just finished reading a few seconds ago. I'd be sitting doing something and find myself sitting frozen in the same position 5 hours later not having moved and having no recollection of anything that transpired in that time...

I developed agoraphobia as well. For a period of time I had to go on meds as I just knew I was loosing my mind and steadily becoming so suicidal that I actually 'began' to try to end it all a few times; it felt like someone else was taking over my body. But I tried to stick school out because I felt it was what I had to do, I'd disappoint my mom, etc, etc. So many of my friends who started school after me graduated before me, and many of them where people that I'd helped and encouraged along the way (I was working in my school's admissions office)! So I felt like major (insert whatever comes to mind here).

About 2 years ago I came to my senses...it ain't working, hon! ;) Soon afterwards I realised/was diagnosed with Celiac and went gluten-free. Man, what a difference! Like night and day. Part of me wishes I'd taken time off from school sooner. You've got to take whatever time you have to for yourself, or you'll just make things worse. I'm still out of school at this point, but now for the first time ever I feel like I'm actually LIVING, man, and that makes everything worth it!!! All the best to you, and keep us up-to-date on how you're doing. You will get through this!!!

I can take like two online classes and keep my grant, so no problem there. Don't know if I'll still be going to Mexico but either way I'm taking things "easy" for a semester. Quitting my pizza job tomorrow.

It'd be nice if I could take off to Mexico. Run every morning at 6 in the morning (keep the exercise going), sleep when i need it, read, do my few online classes, learn my disease well, eat nothing but organic and focus my life purely on my health for a while, etc. Maybe I will be able to. Still looking into it. I want to see how I feel not working at Papa Johns first. Can't leave for a month anyways.

Thanks for all the advice and suggestion. I appreciate it and the support helps. It makes me realize that I'm not going crazy and I am doing the right thing, after all. That means a lot.

It's amazing what just a few words of encouragement can do. Thanks again.

rinne Apprentice
Because I don't have any bug bites or rashes or anything?

Kody, here is some information about Lyme disease. Okay it is a lot of information. :)

Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurologic conditions, as well as arthritis, CFS, Gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes." Not only can Lyme disease be incorrectly diagnosed as other conditions, it can also occur concurrently with other conditions or be diagnosed incorrectly. Therefore, patients who suspect Lyme disease must have a full clinical evaluation by a knowledgeable, "Lyme Literate" physician.

Further, a significant number of patients do not recall any rash or tick-bite. Symptoms can appear quickly or develop over time. Since Lyme is a multisystem disease, the list of symptoms is long, and it is common to see symptoms affecting multiple systems. Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems. Chronic Lyme disease can render people completely disabled. For a comprehensive list of symptoms, please see the symptom checklist.

Open Original Shared Link

Symptom checklist:

Have you had any of the following?

1.

Unexplained skin changes: Fevers

Sweats Chills Flushing

2.

Unexplained weight change: Weight loss Weight gain

3.

Fatigue Tiredness

4.

Unexplained hair loss

5.

Swollen glands

6.

Sore throat

7.

Testicular pain Pelvic pain

8.

Unexplained menstrual irregularity

9.

Unexplained milk production

Unexplained breast pain

10.

Urinary problems: Irritable bladder

Bladder dysfunction

11.

Sexual difficulties: Sexual dysfunction

Loss of libido (desire)

12.

Upset stomach

13.

Change in bowel function: Constipation Diarrhea

14.

Chest pain Rib soreness

15.

Shortness of breath Cough

16.

Heart palpitations Pulse skips

Heart block

17.

Any history of a heart murmur or valve prolapse? Yes No

18.

Joint pain or swelling? Yes No List joints:

19.

Stiffness: Joints Neck Back

20.

Muscle pain Cramps

21.

Twitching: Face Other muscles

22.

Headache

23.

Neck creaks Neck cracks

Neck stiffness

24.

Tingling Numbness Burning

Stabbing sensations

25.

Facial paralysis (Bell's Palsy)

26.

Eyes/Vision: Double vision Blurry

Pain Increased floaters

27.

Ears/Hearing: Buzzing Ringing

Ear pain

28.

Increased motion sickness Vertigo

29.

Lightheadedness Wooziness

Poor balance Difficulty walking

30.

Tremor

31.

Confusion Difficulty in thinking

32.

Difficulty with concentration

Difficulty reading

33.

Forgetfulness Poor short term memory

34.

Disorientation: Getting lost

Going to wrong places

35.

Difficulty with speech

Difficulty writing

36.

Mood swings Irritability Depression

37.

Disturbed sleep: Too much Too little Early awakening

38.

Exaggerated symptoms or worse hangover from alcohol

I'm glad to know that you are quitting your job, how wonderful it would be if all your symptoms resolve from doing that and they could. :) I hope you will excuse me for bombarding you with so much Lyme information but you never know when this kind of information might come in handy.

Best wishes for whatever you endeavor and may good health be yours.

Rachel--24 Collaborator
Because I don't have any bug bites or rashes or anything? <_<

Most people with Lyme never see a bite or rash. I had a tiny bite....I wouldnt have noticed it if it were on my back or head or someplace not clearly visible. I only noticed it because it took a long time to go away. I didnt get sick until 2 years after I got infected from the bite....I had no idea at the time that that one bite would wreck my life 2 years later. I just thought it was a spider bite and never got it checked out. I didnt know anything about ticks or Lyme. :(

MauriceGreene Rookie

kody, if your job was stricly waiting around and picking up a pizza box you would not be getting gluttend. however I doubt this is the case. I would go to mexico, just have fun being lazy and eating right. sounds like fun :P

Most people with Lyme never see a bite or rash. I had a tiny bite....I wouldnt have noticed it if it were on my back or head or someplace not clearly visible. I only noticed it because it took a long time to go away. I didnt get sick until 2 years after I got infected from the bite....I had no idea at the time that that one bite would wreck my life 2 years later. I just thought it was a spider bite and never got it checked out. I didnt know anything about ticks or Lyme. :(

have you recovered and what is the prognosis for people with lyme disease?

Rachel--24 Collaborator
have you recovered and what is the prognosis for people with lyme disease?

No....I havent recovered. I havent even started treatment yet...was only diagnosed a few weeks ago. Lyme is a very complicated disease....I've been learning all that I can. I'm still being tested for other infections that are common with lyme (co-infections).

The prognosis depends on so many different things. If treated immediately the prognosis is extremely good...unfortunately this is often not the case....most people dont get diagnosed because they dont see a bite or a rash. I've been sick 4 years and must have seen about 50 Dr.'s during that time. I finally ditched my HMO...started going to some decent doctors and this last one suspected Lyme at my first appt. Drew the blood that day, sent it to the lab and it came back positive.

I had actually asked to be tested almost 2 years ago....but the Dr. laughed at me, ridiculed me and refused to order the test.

Once Lyme becomes chronic it is impossible to erradicate it from the body but it can be controlled....with proper treatment. Antibiotics arent as effective at this stage.....they are most effective in the initial stage of infection. For me.....it will be a struggle to regain my health...but I'm up for it.

I have alot of problems from going undiagnosed 4 years but the Dr.'s say I have an advantage because I'm young and I wasnt sick long. They say 4 years is relatively short....many people go undiagnosed for decades and these people have a much harder time recovering.

I'm taking it one day at a time and I have good Dr.'s now so I think I'll get there...they say I'll be much better in a year or so.

MauriceGreene Rookie
No....I havent recovered. I havent even started treatment yet...was only diagnosed a few weeks ago. Lyme is a very complicated disease....I've been learning all that I can. I'm still being tested for other infections that are common with lyme (co-infections).

The prognosis depends on so many different things. If treated immediately the prognosis is extremely good...unfortunately this is often not the case....most people dont get diagnosed because they dont see a bite or a rash. I've been sick 4 years and must have seen about 50 Dr.'s during that time. I finally ditched my HMO...started going to some decent doctors and this last one suspected Lyme at my first appt. Drew the blood that day, sent it to the lab and it came back positive.

I had actually asked to be tested almost 2 years ago....but the Dr. laughed at me, ridiculed me and refused to order the test.

Once Lyme becomes chronic it is impossible to erradicate it from the body but it can be controlled....with proper treatment. Antibiotics arent as effective at this stage.....they are most effective in the initial stage of infection. For me.....it will be a struggle to regain my health...but I'm up for it.

I have alot of problems from going undiagnosed 4 years but the Dr.'s say I have an advantage because I'm young and I wasnt sick long. They say 4 years is relatively short....many people go undiagnosed for decades and these people have a much harder time recovering.

I'm taking it one day at a time and I have good Dr.'s now so I think I'll get there...they say I'll be much better in a year or so.

:angry: damn ticks!

by controlling it you mean reducing symptoms? Best of luck with recovery!

Rachel--24 Collaborator
:angry: damn ticks!

by controlling it you mean reducing symptoms? Best of luck with recovery!

yeah....damn ticks! :angry:

If I recover to the point that I'm normal again...or close to it...the Lyme would still be there. It would just be reduced and held back by my immune system. If something happened to me down the road....like an accident, a virus, severe stress...anything that really weakened my immune system would allow the Lyme to come back. I guess this is common with Lyme....people *think* they are cured and go on with life and then years later for whatever reason....the symptoms return and they think they've been bitten again. Usually thats not the case...they didnt get "re-infected" (although it can happen)....rather the Lyme was never gone to begin with. You cant really get "cured" of Lyme but you can be symptom-free and feel as if you've been cured.

Thanks for the well wishes. :)

NicoleAJ Enthusiast

Kody,

It's a good idea to take some time off, and I'm glad that you're quitting your pizza delivery job. As far as MS is concerned--please don't worry yourself about that now. Make sure that you give yourself time to recover from the celiac diagnosis and figure out if there are any other food intolerances or allergies. MS is mostly diagnosed a bit later in life than your age, and you don't want to go through all of those invasive tests for nothing because all of those symptoms can occur with celiac disease. I was tested for MS this summer, and doctors, nurses, and technicians all implied that I had it. I was completely terrified because despite the fact that MS can be manageable at first, it is a degenerative disease that can cause serious complications in the future. Don't put yourself through all of that worry when it's likely that there's a simpler explanation for all of your symptoms. For me, it turned out that I had pernicious anemia, and a simple B12 shot every two weeks was enough to prompt my recovery. Get your vitamin levels checked, and try eliminating common offender foods one at a time to see if you have secondary dietary issues. If you don't see results after that, then you can start to worry about other things, but don't get yourself panicked right now.

Kody Rookie
Kody,

It's a good idea to take some time off, and I'm glad that you're quitting your pizza delivery job. As far as MS is concerned--please don't worry yourself about that now. Make sure that you give yourself time to recover from the celiac diagnosis and figure out if there are any other food intolerances or allergies. MS is mostly diagnosed a bit later in life than your age, and you don't want to go through all of those invasive tests for nothing because all of those symptoms can occur with celiac disease. I was tested for MS this summer, and doctors, nurses, and technicians all implied that I had it. I was completely terrified because despite the fact that MS can be manageable at first, it is a degenerative disease that can cause serious complications in the future. Don't put yourself through all of that worry when it's likely that there's a simpler explanation for all of your symptoms. For me, it turned out that I had pernicious anemia, and a simple B12 shot every two weeks was enough to prompt my recovery. Get your vitamin levels checked, and try eliminating common offender foods one at a time to see if you have secondary dietary issues. If you don't see results after that, then you can start to worry about other things, but don't get yourself panicked right now.

I see. What symptoms did pernicious anemia cause? I ordered a BioSafe anema home-test-kit thingie... well, I punctured myself and I couldn't get any blood to leak. So I did it again. Still none.. like the tiniest drop ever. I even swung my arm around in circles, then held it down and squeezed my whole arm and hand like a ... ahem, and waited and then punctured. Still no blood. I was so mad I grabbed a knife and tried a small "swipe" at my index finger. Okay, that hurt, a cut. STILL NO BLOOD.

WHAT IS WRONG WITH ME?! I can't bleed.

No wonder my hands are always freezing.

So, I'll grab a ton of punctures and then try it again tomorrow. I guess. This was for anemia and a thyroid test.

... what's the easiest way of getting my vitamins checked? B)

almostnrn Explorer

Kody, If you are having a hard time getting your fingers to bleed wash them in warm (almost hot) soapy water before you stick your finger. That may help. Also instead of shaking etc, you may want to try squeezing that finger from the top down (almost like milking a cow). HOpe it helps!!!

lightningfoot speakin words Contributor

woa hawkfire... no hershey chocolate bars?? I am glad its only gluten free for me. O and for the person going to mexico, maybe quitting your job would be a good idea. You are describing symptoms I kind of have when i get glutened, and maybe you are just glutened all the time because of pizza. hope you feel better.

MistressIsis Apprentice

if you aren't getting any blood, drink at least 2 glasses of water. Same if you do get blood but it dries immediately.

I worked for a company that does cancer research and would often give blood for the lab. Same thing they wouldn't get anything and then would make me drink 2 glasses of H2O & then everyting was fine.

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    • Jeff Platt
      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
    • Scott Adams
      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • More2Learn
      Hi, I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections.  Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome.           
    • Wheatwacked
      "grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass  organic meat can be fed wheat feed
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