Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Having Horrible Symptoms And Dont Know What It Is?

Tripleh3lix

Recommended Posts

Tripleh3lix Newbie
Tripleh3lix
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cahill Collaborator
cahill
Posted

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 Newbie
Tripleh3lix
Posted
  • Author

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 Apprentice
Marlie
Posted

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 Apprentice
Marlie
Posted

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 Collaborator
cahill
Posted

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 Newbie
Tripleh3lix
Posted
  • Author

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"

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Marlie Apprentice
Marlie
Posted

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 Apprentice
Marlie
Posted

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 Newbie
Tripleh3lix
Posted
  • Author

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 Veteran
IrishHeart
Posted

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 Newbie
Juls
Posted

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 Apprentice
Marlie
Posted

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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,700
    • Most Online (within 30 mins)
      7,748
    RelievedP
    Newest Member
    RelievedP
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Potential celiac need advice

      By Bennyboy1998 · Posted

      Yes gene HLADQ2 was positive 
    • Wends
      Inconclusive results

      By Wends · Posted

      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
    • cristiana
      How Come Gluten Didnt Bother Me In Italy

      By cristiana · Posted

      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.