New, Frightened Etc...

[Cazzzzzy]

One day I will introduce myself with my story but am really finding concentrating difficult and my head is so sore and every time I move my head the room and everything spins... this dizziness is how I finally found what's wrong with me.

I have had severe weakness over the last few months (neuro symptoms for years before but the past few months have felt like I'm dying)...

Anyway i guess what I'd like to know is can celiac really make me feel this weak and this dizzy... I am too stiff to walk far and very scared!

I haven't eaten gluten for this is my 3rd day and now I have cut cheese and dairy and eggs out as I feel a reaction

I am hoping I can make the doctor tomorrow... What tests should I ask for?

I wish doctors had thought this might be the trouble before - now I feel I am allergic to everything!! What do I eat?.... Am cutting out gluten, dairy, eggs & corn...

Just don't know what to eat and am too weak to go to the shops

This is a living nightmare!

Thanks xxxxxxxxx

[Mom of Boys]

If you start cutting out foods that you think are making you ill, don't be surprised if the docs cannot diagnose you properly. The endoscopy and colonoscopy will only find celiacs if you've been eating gluten so is your goal to get better, or to prove your condition?

If your answer is you want to get better, then my suggestion is to stop eating all gluten, dairy, soy, and corn. Personally,, I can eat corn but you brought it up so I say take it away in an elimination diet for a couple months. Then later when you are feeling better you can try to reintroduce some of those foods to see if they cause a reaction.

Eat: Potatoes, tomatoes, rice, quinoi, rice noodles, mung bean noodles, chicken, steak, fish, shrimp, and make fresh stews in your crock pot. To season stick with salt, pepper, and fresh squeezed fruit juices. Experiement after a few weeks with oatmeal, grits, corn.

I'm just learning that I might need to stay completely clear of soy, which is difficult for me to bear because I love soy sauce but oh well, I'll find other stuff to make my food taste good!

Once you have a plan perhaps you won't be so scared to eat, that will go a long way in helping you heal.

[Cazzzzzy]

If you start cutting out foods that you think are making you ill, don't be surprised if the docs cannot diagnose you properly. The endoscopy and colonoscopy will only find celiacs if you've been eating gluten so is your goal to get better, or to prove your condition?

If your answer is you want to get better, then my suggestion is to stop eating all gluten, dairy, soy, and corn. Personally,, I can eat corn but you brought it up so I say take it away in an elimination diet for a couple months. Then later when you are feeling better you can try to reintroduce some of those foods to see if they cause a reaction.

Eat: Potatoes, tomatoes, rice, quinoi, rice noodles, mung bean noodles, chicken, steak, fish, shrimp, and make fresh stews in your crock pot. To season stick with salt, pepper, and fresh squeezed fruit juices. Experiement after a few weeks with oatmeal, grits, corn.

I'm just learning that I might need to stay completely clear of soy, which is difficult for me to bear because I love soy sauce but oh well, I'll find other stuff to make my food taste good!

Once you have a plan perhaps you won't be so scared to eat, that will go a long way in helping you heal.

Thank you!!!

I want a diagnosis and asked the doc if I should carry on eating gluten for the test but he said no as it stays in your system for 3 months (is this right?)... It is my 3rd day now so it should be there for tests tomorrow?

I am terrified to eat it again if this is what has made me so ill... I look at it like a poison now... But am depressed having to cut all else out but thanks so much for all your suggestions, that's so helpful!

Do you feel better not eating gluten? Nice to know I might get some break from the neuro issues and weakness.

Thank you xxxxx

[eatmeat4good]

What you are experiencing can definitely be caused by gluten. I was dizzy, nauseous, dazed confused and depressed and had constant migraines. The gluten headache is like no other. I haven't had any of these symptoms now that I am gluten free, unless of course I get contamination. That will bring it all back.

Your body may be reacting to the elimination of gluten and you might be sensitive to a lot of foods for a while. As for what to eat, you can make simple soups of meat/chicken and vegetables with a carton of chicken or beef broth that is gluten free. Beans and grains were hard for me to digest as well as raw veggies. I cooked everything very well until I healed and it made a big difference.

Welcome! I hope your tests go well, and I hope you feel better soon. Many people have withdrawal symptoms so it can take a while to see the actual improvement in your symptoms, but don't lose hope because that stage doesn't last forever.

[nomoregluten]

Hang in there and eat some potatoes.

[1desperateladysaved]

I do hope you will feel better soon and will be able to write your story. I want your tests to be accurate whether they are positive or negative. I am pretty sure someone can tell you which tests to get.

Diana

[Cara in Boston]

Your doctor is wrong. Not eating gluten, even for a short time, can cause the tests to be falsely negative. Mine went from very positive to normal after just 10 days of being gluten free. My son, was still having positive blood tests after 6 months. It is different for everyone. But it is clear you doctor is not well informed. If he is wrong about this, I would question anything else he tells you. Do lots of research so you are well informed.

Good luck -

Cara

[tctwhite]

I had this same thing with the episode that landed me in the ER. Ask the Dr for some Valium. It was the ONLY thing that allowed me to be able to walk without assistance. They tried me on the vertigo meds and it did nothing. Within an hour the valium had me able to walk by myself, granted I still had to run my hand against the wall, but I could walk without my husband virtually carrying me.

As far as the testing goes, Im as new to this as you are so I have no advice. Good luck and I hope you feel better!

[jeanzdyn]

One day I will introduce myself with my story but am really finding concentrating difficult and my head is so sore and every time I move my head the room and everything spins... this dizziness is how I finally found what's wrong with me.

I have had severe weakness over the last few months (neuro symptoms for years before but the past few months have felt like I'm dying)...

Anyway i guess what I'd like to know is can celiac really make me feel this weak and this dizzy... I am too stiff to walk far and very scared!

I haven't eaten gluten for this is my 3rd day and now I have cut cheese and dairy and eggs out as I feel a reaction

I am hoping I can make the doctor tomorrow... What tests should I ask for?

I wish doctors had thought this might be the trouble before - now I feel I am allergic to everything!! What do I eat?.... Am cutting out gluten, dairy, eggs & corn...

Just don't know what to eat and am too weak to go to the shops

This is a living nightmare!

Thanks xxxxxxxxx

Keep coming back here, to the Forum! You will find that the folks here are very supportive and more than willing to answer your questions.

Don't be scared!! Try to be positive -- you can get better, especially now that you know to try dietary modifications. It is scary to wonder what you are going to eat to survive, but there are alternatives, and some of them are more delicious than the foods you can no longer have.

I will be thinking good thoughts for you Cazzzzzy!

[WitsEnd]

I had a lot of neuro symptoms that went away when I stopped gluten. I noticed an improvement within a few days but it took a couple of months to feel close to my old self again. It has been wonderful to actually feel good, and is so worth eliminating foods to reach this point.

One comment, you have joint pain which I think is often caused by nightshades so you might want to eliminate those as well. Good luck!

[MitziG]

Your doctor is VERY wrong. It is imperative that you begin eating gluten again and continue doing so until all testing is done!

[Cazzzzzy]

Thank you all so much for your lovely replies!!! Wow so comforting to have some understanding xxx

I am worried about a few things - basically I sent off a blood sample to find out if the cause of my problems were allergy to foods related and when I had a positive result I bought a home test kit for celiac as I couldn't afford the original company's cost and I need to know what is wrong with me & why I have been feeling the way I do!

The home test kit tests iGA (?) levels and the test was positive and along with all the neuro symptoms Ive been experiencing I think it must be celiac?

One thing I am worried about is if the test kit would show up other illnesses that cause iGA ? .... I haven't had many gastric issues but can't say everything is 100% normal gastricly as I sometimes cant go for a couple of days and then the next day it all comes out (sorry!)

I was supposed to see my doctor today but when I phoned to make an appt I found out he isn't in today and will try again tomorrow.... Then I will have a test and go from there regarding my diagnosis.... I phoned him after I took the home test and he seemed concerned and told me to see him...

I don't wanna go into it too much here but I feel pretty let down by my doctors as I have been in and out over the last few years and every time I am told anxiety .... Even when I can hardly walk, just seems so unfair ...... But I will try not to dwell on this and I suppose be thankful that doctors may now take it more seriously...

Woken up today without a headache but do have stabbing pains in the back right side of my head that I often get and dizziness is still here and walking stiffly.... Just will be better to find out a definite answer to all this and an answer to why I have been feeling so ill.

Thanks again xxxxx

Also I guess I will have to eat gluten again then for the test.... Gluten terrifies me now

[Mom of Boys]

There are times that doctors are helpful and there are times that they only add to a patients frustration. Celiacs is STARTING to become a known problem but most doctors don't give any creedence to it at all.

But there are so many things you can do for yourself without a doctor's advice. Obviously you suspect gluten. So go thorough all your cabinets and condiments in the fridge and somehow mark which ones you can have. Make sure all the rest are easy to spot as off limits. And finally, eat! Eat all the potatos, fresh meat, quinoa, rice, sweet potatos, fish (not breaded, or bread it yourself with gluten free flours, easily found these days on grocery shelvess, and lots of fresh fruits and veggies. In this learning stage, stay away from oatmeal. Use quinoa or rice if you are looking for a hot breakfast cereal. Get your health back. If you feel much better on a gluten-free diet, continue to do it! After a couple months you'll be able to tell if other foods make you sick, you can eliminate those too.

You'll be amazed how much better you feel if gluten truly is your problem. then the rest of the ailments, if they are food related, you'll find them in time.

Good luck.

[cavernio]

I had the same questions as you do about high IgA levels. It's complicated and only very recent research seems to be looking into it.

High IgA values is the standard celiac screening blood test, and it is the only one that I received and would receive where I live in New Brunswick Canada. When my IgA test came back really high, my GI didn't even tell me that the biopsy was necessary (although lots of doctors will say that it is), although he strongly recommended it.

Unfortunately there are chances that a biopsy would still come back negative even while you still have the disease.

How high was your IgA? Does it tell you? I read an article featured on this site that said, if I remember right, that any IgA test that is 4x higher than normal will have essentially a 100% correspondance to a positive biopsy. Meaning the biopsy isn't necessary for the diagnosis.

About IgA meaning a different food besides gluten, it's possible. I confirmed with my GI that although my intestines are terribly damaged and that my IgA values were very high that it is possible that, from the research I showed him, that a casein (dairy) IgA response could be responsible and that the tests I had didn't differentiate between gluten and dairy (or any other potential food I suppose, although I'm not as concerned personally).

All that said, however, the theories behind why casein can elicit an IgA reaction is that some caseins have a section that looks like wheat gluten, so it might not even be a different IgA reaction where ONLY dairy causes the problem, but a more generalized one. And lots of celiacs get better even while eating dairy (with or without the lactose.) And even the research paper I read I think less than half their fairly small sample had the dairy reactions.

When I asked if I could find out if I had a casein reaction the GI said no they don't do that, and I said 'But the researchers figure it out', and he said they just don't have such complicated things for diagnosing where we are, not possible! But he did say that if I really wanted to test it I'd have to get better, then try eating dairy (or gluten, depending on what I want tested) again and then wait to see if my intestines get worse again. No thanks!

Don't despair about your doctor and being told it's all just anxiety. It should help that you've got a specific thing you want tested that can explain all your other negative tests you've probably had, while still explaining why you feel so bad. They've told you you have anxiety because they couldn't think of any other explanations. But now there is one, so hopefully they'll take it seriously.

[GFinDC]

Hi,

You should not stop eating gluten until all the tests are done. Usually the celiac blood antibody tests are done first and then an endoscopy is done to take biopsy samples for analysis. If you don't need all that testing to stay on the gluten-free diet than you don't need all those tests. But that is a personal decision each individual needs to make. The treatment for celiac disease is the same either way, a gluten-free diet for life. Which may sound hard for a beginner but it is not so hard after you do it a while. It's just something you get used to. As you can tell by the meal threads there really is a lot of food to eat that doesn't have gluten in it.

Here are some threads with possibly helpful information:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

[Salax]

One of my major symptoms when I get glutened is dizziness. What I find that helps is Dramamine. It's gluten-free and it helps alot.

[Mom of Boys]

If you really want a diagnosis, then by all means go eat some sandwiches and hotdogs! Have a doughnut and a pancake for me too - I really miss those the most!

But look, a diagnosis won't do a cotton picking thing for you. All it will do is PROVE that you have to live gluten free in order to have your health back. But guess what? You can do that without the diagnosis! And you can start TODAY rather than driving your health even farther into the ground, hoping for a diagnosis that they may or may not find! The testing is weak at best. MANY people who should NOT be eating gluten are still in the dark though, because their docs said they were negative on so-and-so test.

If you know that gluten is hurting you, then stop eating it and give the doc a good shove. Until better testing is available, all we've really got are our wits and good sense. Makes absolutely no sense to eat the thing that's killing you so you can TRY to prove it's killing you on some test or other.

I'm not trying to hurt anyone's feelings, I'm just pissed that my doctors think that I'm a whack-a-loon because I'm self diagnosed! We need more Whack-a-loons, then MAYBE more docs will start reading and learning.

[Cazzzzzy]

Thank you all so so much!!! And Mom of boys I'd be happy to give doc a good shove lol ..... I have an appt later so will keep you posted!

I know I should be eating gluten for the test but I will show him my home test etc and will ask for an endoscopy, then for the endoscopy I guess I'll have to eat gluten .... I totally know what you're saying mom of boys but I guess I just long for an explanation as to the last few years of near hell feelings.... Then if I am celiac I will be happy to never eat gluten again as the more I read about it I don't want my loved ones eating it! - We are not even designed to digest it and it causes so many illnesses if you are celiac or not (is that right?)...

I may have to become a whack-a-loon if my doc doesn't take me seriously again even if I have a positive result right there in front of him!!!

I am still feeling dizzy and my feet are tingling/buzzing like crazy and haven't eaten gluten for 3 whole days now but I am trying not to get my hopes up but my legs feel that teeny teeny bit less stiff today but am still so weak in my legs. Also another reason I guess I really want an explanation is I worry these neuro symptoms are caused by a different problem but I do kinda hope it's celiac as it's treatable etc! I've had neuro symptoms for years and it has always been put down to anxiety (even though I'm not anxious) but now it seems they may take it seriously...

Cavernio - I don't actually know the score of the results as it doesn't show that but your info about dairy is interesting! The first test I did with York Tests (a UK company that offers food allergy testing) came back positive but I have to pay more money to find out what I am allergic to! Annoying as I could find out if I am allergic to any more foods (which I think i am as I had a bad reaction to cheese and my feet started tingling instantly) but can't afford it at the mo so will see what the doctor can offer!

Thank you all so so much!!! This website is so great!!!

Also another thing is my symptoms became a lot worse after I gave up smoking 6 months ago and have been reading up about other people that has happened to! Anyone here with that experience?

Thanks all so much xxxxxxxxx

[GFinDC]

HI Cazzzy,

Nuero symptoms are pretty common for celiacs. Celiac can cause malabsorption and that can mean you don't get enough B vitamins and others. B-vitamins are important for proper nerve function. Low vitamin and mineral levels are a sign of celiac disease.