Celiac? Sjogren’s? Accurate HIV test result?
Here are my symptoms:
*Muscle aches/flu like feelings (intermittent)
*Allergies are worse (stuffy nose, horribly stinging/burning watery red eyes, intermittent)
*Sore feeling tongue (looks slightly yellowish near the back)
*Clothes are looser, but scale says I weigh the same
*Tingling and numbness in fingers, toes, hands, legs, even my scapl sometimes
*Ataxia (slight stumbling, intermittent)
*Chronic heartburn/acid reflux (gurgling in throat, especially after I eat or get stressed out)
*Mucus/fat stuff (steatorrhea like) with diarrhea. Sometimes when I go to the bathroom, it will just be mucus by itself. Sometimes it will float. Sometimes it’s bloody
*Hard stools sometimes tend to tear my anus, causing it to bleed.
*Eye fatigue (they always feel tired)
*Exhaustion (after climbing steps or something)
*Shortness of breath
*Eye pain (sharp shooting)
*Eye floaters (On 6/1/07, the eye specialist said my eyes were a little inflamed, probably due to allergies. On 2/12/08, the regular eye doctor said my eyes looked fine)
*Feels like mucus in the back of my htroat
*Burning & frequent urination (like a uti).
*Painful periods sometimes
*Slight joint pain sometimes
*Stiffness/morning stiffness (off and on)
*Slight nausea after eating sometimes or after being overstressed.
*Rotten egg burps usually an hour or 2 before throwing up. (Has been like this since elementary school)
*A lot of gas, either burping or passing gas through the other end
*Menstrual irregularity (has been like this since I was 11 years old)
*Depression, anxiety (have had these since around 6th grade)
*Potbelly (have always had one). I’m skinny, but I’ve always had a round belly that sticks out.
*Mouth sores/apthous ulcers (are usually painful and take awhile to heal because of the places they’re in)
*Sore throat (probably related to acid reflux). I’m always clearing my throat/slightly hoarse/feels like a lump in it.
*Weakness in arms and legs (feels like cement blocks attached to my legs sometimes)
*Celiac levels were slightly elevated
*WBC count was slightly elevated
*Blood pressure was lower than it usually is. 108 over something.
There’s probably more symptoms, But I can’t remember them all. I’m not sexually active. I have really bad ocd and have an immense fear of catching any kind of disease, especially HIV. I had an HIV test done in early december because on may 7th, 2007 I had gotten cut at a manicurist’s. I got my results on january 17th, 2008. It was negative. I’ve also had a stool sample and a urine sample done. The stool sample didn’t show anything ( I thought I had worms because of these little rice like thing in my stool). It’s been about 2 weeks since I had my urine sample done, and people still haven’t called me back. In late may of 2007, I had a CT scan done of my head because of the headaches I was getting. They found a 2 millimeter or something in the center of my brain. So on june 18th I had an MRI done of my head. But whatever it was had just disappeared. They believe it was some kind of fatty tissue and the doctors diagnosed me with tension headaches. I put myself under a lot of stress. I do take a lot of OTC medicines. Like tylenol, benadryl, protonix, gaviscon, etc…In late march of 2007, I had to take antibiotics because of an inner ear infection (water in the ear). I’m so sick of people telling me it’s all in my head or it’s just stress when clearly things are starting to get visible.
Do you think the HIV test result was wrong? I mean,it was after 7 months that I got tested. Don’t you think if I had anything it would’ve shown up by december, if I had gotten cut at the manicurist’s in may? IF I do have an autoimmune disease of some kind (like celiac or sjogren’s) or something like candida overgrowth, do you think it could’ve affected my HIV test results and caused a false negative? Or are the tests so sensitive that they only pick up/look for/discover HIV anitbodies and nothing else? What do you think this could all be? I was supposed to have an endoscopy and a colonoscopy done on 3/13 but I canceled because I’m paranoid about catching something from unsterilized tools. I’m going back to the doctor on 4/3/08 for more blood tests, and I am going back to the gastroenterologist on 4/24. I’ve had about 3 CBC’s and they’ve all been good until december when my WBC count was a little high. I had another cbc done in september and my cholesterol was a little high, but not by much. I’ve also had my elecrolytes checked and apparently they were fine too because she said everything looked fine except that my WBC was a little high.
Ok, sorry this was so long. I would greatly appreciate any help you could give me! Thanks!
With elevated celiac levels and your list of symptoms, you need to go on a gluten free diet and try that for 3-6 months and see how many of those symptoms clear up. The apthous ulcers that are really painful should be one of the first things you will see clear up if you in deed do have celiac disease. Contact a local chapter of http://www.csaceliacs.org and see if they can help you get started.
How old are you? If you have been on a gluten containing diet for a long time then it is possible most of these problems could be due to the cumulative effect of poor nutrition due to malabsorption in the small intestine due to intestinal wall damage caused by celiac disease.
So get on a gluten free diet and try it since you don’t want to have an endoscopy due to fear of infection.
Do you think this could be Chronic Fatigue Syndrome?
On 3/19/07, I went to the ER because my ear was acting weird. When we got there, the whole waiting room was filled with people throwing up and coughing. Anyway, about a week later, me and my whole entire family got sick. It was THE most horrible flu/intestinal virus that we’ve ever gotten. I mean, I was dry heaving. I had nothing to throw up, but yet, I still felt like I had to. Anyway, skip to about 2 months later. It started with heartburn and these weird icepick like headaches. Skip all the way through 2007 and 2008 to now, and I’ve gotten so many strange symptoms. My doctor did diagnose me with Ehlers Danlos Syndrome on 4/3/08 (which is a genetic connective tissue disorder). I don’t see why more symptoms of it would be showing up all of a sudden. This makes me question if that virus caused me to get fibromyalgia or CFS or some kind of dysautonomia or something. Here’s some of my symptoms. They’re intermittent:
*Headaches (pressure/stabbing sensations)
*Frequent urination (tests showed nothing/was clean)
*Painful periods (stabbing pains in lower abdomen/rectum/can’t have a BM sometimes cause of it)
*Electric shock sensations
*Diarrhea/constipation/stabbing sensations in stomach/cramps
*Eye pain/eye floaters
*Stinging/burning sensation in genital area/vulvodynia
*No weight loss, but clothes are somewhat looser on me (even when they’re new)
*Allergies (eyes, throat, nose). Never had allergies before/feels like they’re getting worse
*Post nasal drip feeling
*Dizziness (always had this/EDS)
*Low blood pressue (always had this/EDS)
*Gastroparesis (didn’t have test, but doc thinks I have it. Goes with EDS)
*Tingling sensations (finger, legs, arms, hands, sometimes face/neck)
*Cognitive difficulties (memory, thinking of words, confusion, etc…)
*Shortness of breath
These are most of my symptoms. What really bugs me is that I do have OCD and depression among a few other psychiatric illnesses, and people automatically assume it’s all in my head. I’ve had OCD and Depression since I was little, why all of a sudden would I start imagining these feelings. My family doesn’t believe me when I tell them about my symptoms. My mom doesn’t even believe I have Ehlers Danlos even though my doctor diagnosed me in front of her.
I’ve already had a stool sample done, a urinalysis, ANA screen, SED rate (all clean), MRI and CT scan. Had a fatty tissue in brain, but ti went away. My WBC was 10.9 at one time. Had an HIV test done(NEGATIVE!) I am not sexually active or do drugs or anything. AGA levels for celiac were slightly elevated. Thyroid levels were fine.
What do you all think? Sorry this was long.
I am a 20 year old female also.
Dizziness, Brain Fog, Neck Pain?
For the past 3 years i have been suffering from a multitude of debilitating symptoms which have yet been undiagnosed by numerous medical professionals. When i first noticed the problem it hit me almost suddenly, i felt extremely dizzy, felt like i was dehydrated or just needed rest. I woke up the next morning and the dizziness was still there. My symptoms are continually getting worse and i am currently suffering from chronic neck pain, pressure on my forehead and behind the eyes, heightened sensitivity to light, horrible brain fog, headaches, disequilibrium, anxiety / depression (which i never experienced previously), blurry vision, eye floaters, and even trouble speaking. And these are just some of the most troubling symptoms. The easiest way to describe the feeling is an almost constant state of drunkenness. After consulting a number of neurologists, ENT, psychiatrists, and general practitioners, i am at a loss with no definitive answers or treatments. Avoiding wheat / gluten helps my symptoms but only about 30% or so. Has anyone experienced similar problems?
Hi guys, I’m hoping that someone can give me insight into what I’ve been feeling lately. Since around late may of last year I’ve been getting these strange & annoying symptoms. In late march I got an ear infection (I think water in the ear), took some antibiotics, and was ok. Then I started getting tension headaches, indigestion, and then the stomach issues started. At first, I kept having to go to the bathroom after eating. Then sometimes I wouldn’t need to go at all after eating. Then I started getting “attacks” of diarrhea (occasional) that was filled with mucus, sometimes it would be bloody. When I’m about to get these attacks, I always feel a gurgling in my rectum. It looks like fat or something, and sometimes it floats on the water. I get indigestion/heartburn everyday. I always get gurgling in my throat, constant burping/passing gas, painful muscles spasms/cramps (intermittent), painful mouth sores (intermittent), dizzy spells (have gotten these since 4th grade), chills, eye pain (sharp/stabbing/ dull ache), eye floaters, in june of 2007 the eye doctor (specialist) said my eyes were a little inflamed, in feb of 2008, the regular eye doctor said my eyes were fine, my clothes are getting looser (but the scale says I weigh the same. I don’t lose any weight, I just stay at the same weight), shortness of breath (sometimes turning in bed or climbing stairs causes shortness of breath), rotten egg burps (1 or 2 hours before I’m going to throw up. Had this since elementary school), Fatigue (more so than usual), ataxia (not horrible, but slightly noticeable) I always find me “catching” myself lately, panic attack symptoms (rapid heartbeat, hot flashes, chills, shortness of breath), loss of appetite, other times am starving, I usually feel worse after eating, irritable moods, headaches, tingling in my extremities, uti like symptoms when on period, menstrual irregularity (has been like this since I first got my period at age 11), constipation (hard stools tend to tear my anus), my allergies have been worse (stuffy nose, runny itchy eyes), last time I had my blood pressure checked the assistant said it was a little low (108 over something), my celiac levels were a little elevated, as were my WBC count. I get these weird sensations in my ears like high pitched ringing or fluttering wings or something. I do have ocd an anxiety disorders, but something just doesn’t feel right. Everyone just disregards me saying that it’s all in my mind, or that it’s just IBS. I was supposed to have an endoscopy and a colonoscopy done, But I’m paranoid about catching infectious diseases from unsterilized tools. Do any of you with celiac ever have these symptoms? Or do you think it could all be in my mind? It’s just too many things to be all in my mind.
I’ve just turned 20, and I also experience abdominal cramps/spasms.
And also muscle weakness. When I get that “fat” stuff, it smells worse than usual.
In my opinion, especially with elevated results from a Celiac panel, you are a classic case of a fully symptomatic Celiac. If your blood work came back positive and you are symptomatic, why on earth was further testing not pursed or the gluten free diet started (if you do not want further testing)?
I am willing to bet that the vast majority if not all of your symptoms are caused by untreated Celiac Disease. You may even find that your “anxiety” disorder and “ataxia” are really presentations of Celiac. Do you have joint pain as well?
I would also rule out other bowel disorders like Crohn’s and polyps if you are having mucous and bloody stool.
There is always the chance that you don’t have Celiac of couse, and this really is simply anxiety.
But I’m willing to bet that you DO have Celiac, and it is causing you major problems. You should not have to live this way when the treatment is as simple as changing what you eat.
Please follow up with your doctor and do not stop until you get the support you need. If your doctor won’t help you, find one who will. If you do not care if you have a formal diagnosis, no one can stop you from trying the gluten free diet. While I advise people to be formerly tested, you should not have to suffer either if there is a good chance that you have Celiac and no one seems to want to completely rule it out.
I would also get a full medical exam again. Other autoimmune diseases tend to cluster with Celiac, including autoimmune thryoid disease. Your symptoms may also be related to this, or another co-morbid condition.
What are some of the symptoms of autoimmune diseases? I’m hoping someone with personal experience can help me out here. I have so many issues going on, and it all started happening last may. I have horrible allergies, really bad dry eyes, cognitive problems, itchy/dry skin, fatigue, weakness, GI issues, bladder issues, gurgling in throat/acid reflux, hot flashes, chills, ataxia, one time it felt like my vocal cords were paralyzed (like I couldn’t talk at all), eye floaters, muscle pain, headaches, etc…My wbc count was a little elevated, my eyes were a little inflamed on 6/1/07, and my celiac levels were a little elevated, My blood pressure also gets kind of low sometimes (the lowest was 98). Then other times it will be through the roof. I noticed heat for some reason makes me feel a little worse. I did just get diagnosed with ehlers danlos syndrome (classical type) and my doc thinks that my EDS could be affecting my central nervous system.
I always used to get vomiting episodes and rotten egg burps ever since I was little (they suspect gastroparesis). I’ve also gotten dizzy spells ever since I was in 4th grade. One time I had really bad vertigo. Tingling and electric shock sensations as well. Anyway, I’m so tired of people always saying that it’s my ocd and anxiety disorders. I wanted to check my ESR and get an ANA screen done, but everyone’s like you don’t need blood tests and all this other stuff.
So for any of you who have autoimmune diseases, what were some of your symptoms and how long did it take before you were diagnosed? Thanks!
The most active forum for discussing this that I can find is
The immune system seems to be a mystery to doctors. I am so sick of being sick.
Have you tried eliminating gluten and soy? It was a life saver for me. I don’t get any immediate symptoms, just a slow decline if I eat it. For me, I’m allergic to milk protein too.
Have you had a colonoscopy with biopsies for lymphocytic colitis?
Heat does kick off ‘cytokine storms’ and make allergic reactions worse if it raises your core body temp.
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