Having Horrible Symptoms And Dont Know What It Is?

[Tripleh3lix]

Hello everyone, I am new here so bare with me.. This is pretty important to me, so if you can reply, that would be much appreciated. I am 21 years old, 5'10, 200lbs. So I have been in pain for the last 2 and a half years. It started with chest pains (burning sensations). They eventually went to my stomach and ribs, then to my head. It then has been in my arms, and hands (as of the last six months) and has now spread to my neck and spine/back. The doctor has done a bunch of blood work, MRIs on my head, 2 celiac tests with blood work but not much showing up. I don't know what to do, but it burns everywhere. My head is a bit different, and when the pain gets really bad it'll feel like there's something swelling in there *but there's not* and my ears will turn red. I had a different doctor before this one who thought I was crazy and tried to send me to a psychiatrist. This other doctor recommended it to, but he put me on klonopin cause he thought it was anxiety and he realized it wasn't working for me, and that I had nothing to be anxious about. I've lost 20lbs and don't feel any better at all.. I really need some advice.

[cahill]

When you say

2 celiac tests with blood work but not much showing up.

what does "not much" mean??? do you have a copy of your results , if you do could you post them??

Have you had any allergy testing done??

[Tripleh3lix]

When you say

what does "not much" mean??? do you have a copy of your results , if you do could you post them??

Have you had any allergy testing done??

I have a bunch but that would take up like 3-4 long posts LOL. And literally nothing has showed up. a while back some high cells in my gluten count came up, i forgot what they were called, but they weren't high enough and they did an ultrasound and couldn't see anything but a "lot of gas". and doctors haven't even considered allergy testing for me.

[Marlie]

I have a bunch but that would take up like 3-4 long posts LOL. And literally nothing has showed up. a while back some high cells in my gluten count came up, i forgot what they were called, but they weren't high enough and they did an ultrasound and couldn't see anything but a "lot of gas". and doctors haven't even considered allergy testing for me.

I would look at your results and see specifically what Celiac Tests they performed and post what tests they did. There are multiple different panels for Celiac Disease.

[Marlie]

You might want to look at medications especially if you have been taking any since the start of your symptoms. You can be okay with a medicine and then one day you start having a reaction. I might try seeing an allergist or a doctor that practices Integrative Medicine. Do you ever feel better, like at work or on vacation. You might want to try an elimination diet. I would look at environmental causes. It sounds like you are quite miserable, and I would keep seeing specialists until someone can figure out what's wrong. Years ago my face would turn red at work and feel like it was burning and I noticed it would get better at night. The irritant was a chemical from a new rug at my workplace. Once removed my problems ended. I also took a medicine years ago and after a few weeks I developed red blotches around my joints and they felt like they were on fire. I ditched the medicine to see if that was the problem. Sure enough it was and with some steroids my symptoms ended. I hope you find some answers.

[cahill]

If you are going to have any testing for celiac's it needs to be done Before you go gluten free.

I would suggest talking to your doctor about allergy testing and a full celiac panel .

[Tripleh3lix]

I would look at your results and see specifically what Celiac Tests they performed and post what tests they did. There are multiple different panels for Celiac Disease.

weirdly enough everything else is on the site BUT the celiac panels they did. they did one in 09, and another one this year in August, but it's not here. Only one I can find was in 08 and it said it was negative

"Component Your result Standard range Units

HELICOBACTER PYLORI IGG,SER,QN NEGATIVE NEGATIVE"

[Marlie]

weirdly enough everything else is on the site BUT the celiac panels they did. they did one in 09, and another one this year in August, but it's not here. Only one I can find was in 08 and it said it was negative

"Component Your result Standard range Units

HELICOBACTER PYLORI IGG,SER,QN NEGATIVE NEGATIVE"

I'm fairly new at this but I don't think that was a Celiac test. I googled Helicobacter Pylori and it appears to be related to an infection that can cause an ulcer.

A Celiac Panel Test will include the following tests

Total Serum IgA - They check this to see if you are IgA deficient because it can effect the test results

EMA IgA - Anti_endomysial Antibody test

tGG Iga - Anti Tissue Transglutaminase

DgP Iga - Deamidiated Gliadin Peptide

DgP Igg

There is also an older test Anti-Gliadin Antibodies AGA-IgG and AGA IgA

[Marlie]

Has your doctor ever run vitamins or nutrient tests like B12, Magnesium, Folate, Vitamin D, K? Also, have you seen any specialists at all or just an internal doctor?

[Tripleh3lix]

Has your doctor ever run vitamins or nutrient tests like B12, Magnesium, Folate, Vitamin D, K? Also, have you seen any specialists at all or just an internal doctor?

I've seen a Gastro but it wasn't for that issue, it was for liver enzymes being elevated. My hospital "kaiser" has most specialist in the same hospital. Anything you recommend to visit? I've seen a neuro, migraine specialist, the GI, gotten an ultrasound, MRI's on my head (for the pain), gotten acupuncture.

[IrishHeart]

You wrote: "I don't know what to do, but it burns everywhere. My head is a bit different, and when the pain gets really bad it'll feel like there's something swelling in there *but there's not"

OMG!! I have similar "burning" pain! I sometimes feel like I am on fire. My head feels like it is "swollen" especially my temples. When I first felt it, I couldn't even sit down or lie down because I could not stand the irritation. I paced the floor many nights and days. Sometimes, even my clothes hurt . I have told this to neurologists, rheumatologists, and a bunch of other doctors. EMGs and MRIs--and many repeated Lyme tests (NEG)-- blood work--reveal I am "normal". My B-12 is good because I supplemented heavily. Allergy testing is "normal". None of them can explain this weird burning sensation I developed in Feb. 2008. I am NOT crazy, honest!! :>)

I was bright red for a long time, too. I never had allergies in my life! But, even my scalp turned red. (part of the celiac for me includes having my hair fall out:<( )That redness has calmed down a bit. I felt like someone was holding flames to my skin. Then, oddly, my tongue and mouth started to burn too. (it is NOT yeast,I've been tested)

Baffling, isn't it??

I have read that celiac can cause peculiar pain including burning sensations, and an elevated histamine response, so I am praying that with elimination of gluten and soy (some say on here that taking out soy helped with their nerve pain; some say taking out corn did it) that I will see some reduction in this weird, crippling pain. The PT I am working with to regain my massive loss of muscle tone to this disease told me that inflammation can cause the nerves to feel like they are burning.

I don't know what to think. It's been going on nearly 3 years and it has ruined my life. I wish I could tell you what it is, but I can say I think I KNOW how you feel. Sorry you are going through this.

Were you tested for Lyme's? It can cause burning pain. I hope you find an answer. Please keep me posted because you are the first one I have found who mentioned this "burning".

Ginny

[Juls]

Hello, I am new to this forum, so I will try to be brief and to the point. I have had symptoms for years, but was told that I had a "nervous stomach" and possible IBS. I have had panic attacks for 25 years, and depression for the last 12, diagnosed. On meds for anxiety, depression for many years, feel pretty good mentally. June 2010 decided to lose a few pounds, went on a carb free diet until October 2010. When started back on carbs, many stomach aches, bowel problems, gas, bloating, generally feeling crappy. Couple weeks ago woke up in the middle of the night with the worst stomach pain I have ever encountered in my life, so bad after 4 hours went to ER. They scanned, x-rayed, untrasound, blood work, everything. Found nothing. Went to Gastro Dr., had a endoscopy, visually he said all looks fine, waiting for biopsy results. I feel great if I don't eat. I am down close to 50 pounds, when all I wanted to lose to begin with was 10-20. I am trying to eat gluten free, then occasionally eat something that is not by accident, then really pay the price. If the Dr. says I don't have celic, I think I am going to go insane. I am starving all the time, but when I eat something "bad" my stomach hurts, but the hunger is still there. I am now scared to eat, and have almost resorted to making myself sick when I eat something that does not agree with me, although I have not been successful at doing this, yet. Am I crazy? Does this sound familiar to anybody out there?

[Marlie]

Well anyway I did read that there are connections of burning pain in the extremeties and celiac when I googled it today. One more thought since you can't find your celiac blood work, that might give you clues as to whether celiac might be a problem. Its not uncommon for celiacs to have light color oily stools that may float due to malabsorbtion issues.

Also since your liver enzymes were elevated You might consider seeing a liver specialist. If I were in your shoes I would just keep trying doctors until someone can figure this out. I would also look into your vitamin levels because they might point you in a direction.

Have you ever tried gluten free to see if it helps your symptoms? Prior to my childs dignosis with a biopsy I was only feeding her gluten at night and could see the gluten severely effecting her after dinner. If you try this beware it could effect lab results and gluten lurks everywhere.

I hope you figure this out!