Head Feels So Strange

[jmd3]

I feel so strange....

Newly diagnosed in Feb - only by bloodwork, the endoscope did not support the celiac - however, I believe the Dr.s as my itching and burning sensations has stopped...but that is all that is better. Only been gluten free for about a month, and I still feel the same. I still have pain in my R side pain. Sometimes I double over in pain. I even have little red dots everywhere...most on my abdomen.

My head always feels full - like there is a lot of pressure, as if it is going to explode, at times it is hard to turn my head. Sometimes it feels as if it is cracking, My ears feel like they are full too, and my throat sometimes hurts. I get dizzy if I look down, and sometimes when I look up. It's like a fog in my head. Sometimes it feels as if I am drunk all the time, and I haven't had any alcohol for over 6 months....If I lay down...(that is all I am doing lately) most of the bad feelings go away.

I just started to take probiotic dietary suppliment, (gluten free) hoping that will have my side pain.

I also take a muti-vitamin ( gluten free) and I have to take an anxiety pill (gluten free)at bedtime, just so I can get 4 to 5 hours of sleep at night. I seem to crack with just a little bit of stress, I can't tolerate much.

I have been miserable since Oct 06

Had full body scans, and even mri of my brain, good news there...

Any suggestions, does anyone else have problems with there head??? Is this a side effect of celiac - Or am I just going crazy?

[alamaz]

"brain fog" can be a symptom of being glutened. are you sure you are 100% gluten free without cross contamination? have you been tested for other diseases along with celiac? have you tried eliminating dairy and soy at all? have you had a gallbladder scan? not sure what type of right side pain you have.

i've been diagnosed since late february and still have bad days so it doesn't happen overnight. the first week i noticed a huge difference but it's been up and down since then. i know when i get glutened or eat a source of soy because the right side of my neck gets stiff and feels puffy (to me, not to any one else) and i have trouble swallowing. almost like i have a sinus infection or sore throat but i know i'm not sick. i also get the brain fog where i feel like i'm just physically on the earth but mentally three twilight zones away.

amy

[jmd3]

Yes, alamaz, that is how I feel!!! My head feels so awful!!!

I have been very careful to eat only gluten-free foods. I pick several items each day and actually call the company to see if they are gluten free. - Most of the items are marked gluten free on the box. I am trying to eat fruit and vegetables and plain meat. I am afraid to eat!

I have had so many tests of my whole body, and every kind of blood test that you can imagine...the dr's can't seem to find anything.... You name the test, I believe I had it. The only thing that shows up is some sermar ( a bacteria) - serratia something....It has shown up on my cervix, in my urine, but I have no symptoms. I am told everyone has this bacteria in there stomachs and so-forth. I got very ill last June on a trip, with giardia, and I have had the pain ever since, but the dr's say that has all cleared up. My colonsocpy shows no sign of anything on my side at all.

It is so frustrating, and stressful. I get so teary all the time too. Little things send me over the edge.

It just seems like I can't get better.

[alamaz]

oh, i hear ya on the little things setting you off. just remember every one has good days and bad days and some times life goes through a rough patch. give yourself time and try not to pressure yourself into feeling better. it'll come with time and strict diet. just from my experience right now i am doing better if i limit myself to non-processed foods. fruits, veggies and meats and limited amounts of nuts (too hard to digest) are the main staple of my diet right now and i when i try to eat a baked good or candy i feel worse within an hour. that could be a yeast issue as well and the probiotic you are taking can help. Also, look into soy and diary. Alot of people have to cut these out at first and then reintroduce them. have you tried eating smaller meals through out the day? that might help with any digestion pain or general abdominal pain you experience. also, if you join the celiac sprue association www.csaceliacs.org they publish a big binder listing gluten free items.

did you get a second opinion or do any research on that bacteria they told you every one has? that sounds off to me but i've never been told i had a bacteria in me.....hmm.....could you have a subsequent kidney/bladder/UTI ? i'd find out the correct spelling of it and do some research.

[jmd3]

did you get a second opinion or do any research on that bacteria they told you every one has? that sounds off to me but i've never been told i had a bacteria in me.....hmm.....could you have a subsequent kidney/bladder/UTI ? i'd find out the correct spelling of it and do some research.

I didn't mean to miss lead you.... I have the bacteria showing up in weird places. I have had 3 different doctors fing ot over a 4 month period. It is Serratia marcescens (sermar) - but everyone does have it in there system. You're not really diagnosed with it, unless shows up in weird places, or it is making you ill. Mine is. I have had to be on cipro for several months - thus destroying my internal gi even more.

I am thinking I am eating gluten free, but apparently I am not. I am reading everything on the label, and then usually calling the company to make sure. I think I will start off tomorrow with just basic rice cereal, and just do rice,bananas, applesauce, plain chicken... anythoughts?? I found out that even benydryl can not say they are gluten free, so I have switched over to clariton for allergies that are showing up for no explained reason.

My frustration level is a at all time high, I brake down so easy. So against my whole personality. It seems that noone wants to hear my problems, that this is nothing, what a major struggle! Sometimes I don't even want to get out of bed because of the hassels.

Our town has just started a support group, but it only meets every 3 months. Unfortunitely, the next meeting isn't until June. They are trying to form a chapter with the celiac org group....

[ravenwoodglass]

Have you checked for gluten in non food items as well, things like bird seed, pet foods, toiletries, soap and shampoos, household glues, drywall compounds, wall paper paste, makeup and pet litter, cross contamination from can openers etc?

Do you still eat in restaurants frequently? Do you consume alcohol, some think they can tolerate gluten grain alcohols but large numbers do not.

The plan to go withonly whole, fresh, naturally gluten free foods is a good one. It is the easiest way at first to heal. After you are healed then you can add back in processed goodies.

[jmd3]

Have you checked for gluten in non food items as well, things like bird seed, pet foods, toiletries, soap and shampoos, household glues, drywall compounds, wall paper paste, makeup and pet litter, cross contamination from can openers etc?

Do you still eat in restaurants frequently? Do you consume alcohol, some think they can tolerate gluten grain alcohols but large numbers do not.

The plan to go withonly whole, fresh, naturally gluten free foods is a good one. It is the easiest way at first to heal. After you are healed then you can add back in processed goodies.

I have not had a drink of alcohol in 7 months - I would love to have one, but I am so scared!!

I have to go out of the country in May - and that has me so worried! Mexico - that is where I got so ill last June. I am petrified as I am told to stay away from raw fruits and vegs. No fried foods either.

I have only gone out to eat a few times - then I eat mostly salads - with just vineger and a dash of oil.

I put a lotion on my hands, which I had a slight cut - I now have a scar because there was oatmeal in the lotion... I have cleared all my shampoos, gave most of them away as they said wheat protein in the ingrediants.

Bare essentials, or bare minerals - they tell me there products are all gulten free, so I am safe there, I will have to watch the pet foods, wash my hands real careful - totally forgot there. And my daughter has a habit of opening the bread and laying it on the counter to 'fix-it" so we have to stop that.

[JNBunnie1]

I didn't mean to miss lead you.... I have the bacteria showing up in weird places. I have had 3 different doctors fing ot over a 4 month period. It is Serratia marcescens (sermar) - but everyone does have it in there system. You're not really diagnosed with it, unless shows up in weird places, or it is making you ill. Mine is. I have had to be on cipro for several months - thus destroying my internal gi even more.

jmd, have you checked to see if your cipro is gluten-free? And maybe mention to the doctors that if it's been four months maybe IT'S NOT WORKING!?!?!?!

[dally099]

I have not had a drink of alcohol in 7 months - I would love to have one, but I am so scared!!

I have to go out of the country in May - and that has me so worried! Mexico - that is where I got so ill last June. I am petrified as I am told to stay away from raw fruits and vegs. No fried foods either.

I have only gone out to eat a few times - then I eat mostly salads - with just vineger and a dash of oil.

I put a lotion on my hands, which I had a slight cut - I now have a scar because there was oatmeal in the lotion... I have cleared all my shampoos, gave most of them away as they said wheat protein in the ingrediants.

Bare essentials, or bare minerals - they tell me there products are all gulten free, so I am safe there, I will have to watch the pet foods, wash my hands real careful - totally forgot there. And my daughter has a habit of opening the bread and laying it on the counter to 'fix-it" so we have to stop that.

hi, this will sound a little silly, but go to your local ER or docter and ask for some latex free gloves. i have a box and i wear them when i have to make the kids their lunches or do any major touching of gluten foods or products. mine are bright blue, i love to tease my husband when im wearing them. hope this helps,

GOOD LUCK

[jmd3]

jmd, have you checked to see if your cipro is gluten-free? And maybe mention to the doctors that if it's been four months maybe IT'S NOT WORKING!?!?!?!

Yes, Cipro is gluten free - There was a culture - cipro kills sermar. However it kills almost all bacteria - good and bad - that is another reason for the probiotics - The pharmaists says there will probably be a battle of good and bad going on for the next few weeks - where I may feel worse, but he assures me that the good will win!

I usually get up fine in the morning - it is later in the day - I start getting tired, then my head feels so aweful - I have only been diagnosed for a short time now, I just can't wait for the day when I feel good for an entire day!!

[holdthegluten]

I feel the same way........My head feels like it is gonna pop. I have pressure mainly between my eyes, and around my temples accompanied by a stiff neck. It freaks me out and bothers me greatly. I dont know if its stress, some sinus issue, or something crazy like a tumor. For some reason Ativan seems to help a lot, and i only take .5mg at night . Is it really the Celiac causing it, or is it stress/anxety. Puzzled?????????????????

[HannahHannah]

Hi, I don't know how helpful this will be...

I'd been getting terrible headaches also, and my concentration dipped randomly throughout the day (this was only really happening in the first few weeks of cutting out the gluten). I realised that one thing that helped it was simple - drinking tonnes of water. I drink so much water I'm constantly going to the bathroom!! Also vitamins - simple multivitamins. It isn't an overnight cure, but I've found it can really lessen the symptoms.

[jmd3]

I feel the same way........My head feels like it is gonna pop. I have pressure mainly between my eyes, and around my temples accompanied by a stiff neck. It freaks me out and bothers me greatly. I dont know if its stress, some sinus issue, or something crazy like a tumor. For some reason Ativan seems to help a lot, and i only take .5mg at night . Is it really the Celiac causing it, or is it stress/anxety. Puzzled?????????????????

I have to take the same pill..just to relax and get some sleep at night - My newest dr (#5 - of just pcp dr's in 6 months) begged me to try this pill, he promised it would help me.( I had my original pcp for 23 years - never sick, then I fell extremely ill last Oct- he thought I was totaly crazy with all my symptoms, even refused to let me come to office for visits, made me go to ER!!! - what a jerk!!!) Anyway, I thought this new dr. was trying to get me to take the anxiety meds because he thought I was crazy too. I had insomnia so bad that I would only sleep about 2 hours, I had the biggest + darkest bags under my eyes. My bags are still there...but not as bad. Sleep seems to help me get up with a much better attitude. But, by afternoon my head starts feeling the pressure again. I even had trouble just holding my head up...it is not quite a bad as it was, but I still have trouble just turning my head. I believe it is nerve damage from the celiac. It maybe called - peripheral neuropathy I just pray that it is not permanet. Perhaps after a few months of gluten-free, it will will ease up somemore. My earaches don't seem to be as bad anymore, although I still have the pressure. Going to stay with this dr for a bit. I can't seem to find any dr's here YET that understand celiac

I have also learned that this disease can attack any organ that it wants to, not just in the GI tract. So as I understand it - my brain and my nerves were being attacked by my immune system.

Thank-you to those that come to this board and share your info, it helps me so much in just everyday decisions right now! It is so great to be able to come to this board for help and to know that I am not out of my mind and this is REAL for me.

[montanamom]

I've been having this same problem for 2 months now. I have been strictly gluten free since about May of this year but for the past two months i've been having extreme pressure in my head off and on every day. The pressure is mostly at my temples but i also have some weird sensations at the top of my scull that i can only explain as a boiling hot feeling. At times i feel like passing out even when i am just sitting down. It is stressing me out big time so i am going to see a neurologist tomorrow just to rule the big things out (tumor. aneurism etc) I am wondering if because of eliminating gluten that we are not getting some nutrients that we need, specifically L-glutamine? I have no idea but i've heard that L-glutamine affects the neurological system. Has anyone found answers to this "head pressure" problem?

[GlutenGalAZ]

I've been having this same problem for 2 months now. I have been strictly gluten free since about May of this year but for the past two months i've been having extreme pressure in my head off and on every day. The pressure is mostly at my temples but i also have some weird sensations at the top of my scull that i can only explain as a boiling hot feeling. At times i feel like passing out even when i am just sitting down. It is stressing me out big time so i am going to see a neurologist tomorrow just to rule the big things out (tumor. aneurism etc) I am wondering if because of eliminating gluten that we are not getting some nutrients that we need, specifically L-glutamine? I have no idea but i've heard that L-glutamine affects the neurological system. Has anyone found answers to this "head pressure" problem?

montanamom --

From my own experience.... I have felt similar to this a couple of times this year and have found out I cannot tolerate MSG (Monosodium Glutamate -- not associated with gluten). It is hidden in many foods (in the ingredients). When I first figured out about the MSG I was eating a certain new food off and on for about a month till I put two and two together.... I felt like throwing up all month, hot and normal feeling, head hurt at my temples and lower neck and I would feel really dizzy and my head felt like it was full of pressure.

Just a thought to look at your foods but yes definately check into this.

Hope you figure out what it is and feel better.

GOOD LUCK

[srthomas21]

Hi Jmd3

I'm having the exact same weird head/neck issues that you explained in this post. Did your problem resolve itself or did you do something to fix it. It's very annoying and bugs me quite a bit. I wish I knew what it was.

Thanks for any info

[sylviaann]

Have you checked for gluten in non food items as well, things like bird seed, pet foods, toiletries, soap and shampoos, household glues, drywall compounds, wall paper paste, makeup and pet litter, cross contamination from can openers etc?

Do you still eat in restaurants frequently? Do you consume alcohol, some think they can tolerate gluten grain alcohols but large numbers do not.

The plan to go withonly whole, fresh, naturally gluten free foods is a good one. It is the easiest way at first to heal. After you are healed then you can add back in processed goodies.

Hi there!

Which gluten grain alcohols can you safely tolerate?? Did you tell me in a previous post that you could tolerate Bacardi regular rum?? Are you able to tolerate any wines?? I drank 2 glasses of white wine last night and my neuro symptoms (periodic limb movement at sleep onset) occurred. I am keeping a food/medication/cosmetic diary and normally do not drink much, especially during the past 2.5 years. The frustrating part of my neuro reaction (from what I have researched) is that even though it is "secondary myoclonus" caused by gluten ingestion, it can behave like "primary myoclonus" (i.e. any strenuous activity can exacerbate it)...and I have been using nautilus weights and doing leg lunges in the the past several days.

Thanks a million,

Sylviaann

Florida

[mellowyellowmushroom]

I had the same symptom for more than a week or three after going gluten-free--I think it was a combination of gluten withdrawal, the fact that I was still eating grains and that my gut is likely a bit leaky in its healing process. It went away finally.

What really helped me was eating mostly fruits and vegetables for a while. A little bit of soy seemed all right for me. But any grain was a problem and still seems to be. I also had the rash.

You could check for other food intolerances; cross contamination; and get good bacteria in your gut. Probiotics. (Also check for parasites--I had and have those--it's hellish.)

[srthomas21]

Hi Thanks for the reply,

I'm not gluten free yet. I haven't even started to try because I haven't got the biopsy back and if its negative I want to do the blood test to check for it.

My mom has celiac so there is a good chance I have it too.

I don' t have any gastro issues from gluten that Im aware of though I don't have a colon (was removed due to ulcerative colitis 10 years ago)

The head and neck stuff is just so weird I don't know what to think of it. Not sure if it could be a reaction to Gluten or not.