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Sniffy911 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsDiagnosed Celiac Disease 3 Years Ago, Still Not Getting BetterHello All ! I just wanted to post a little story on what's happened in my past.
Firstly...My senior year in highschool (17 at the time, Male) One night i went to sleep and suddenly felt like I lost breath and started hiccuping non stop. I went to the E.R. and they said I looked fine except I had a sinus infection. Months passed and I was still having problems mostly with this feeling of shortness of breath. I then began to start getting stomach pains. Pains were just mostly really bad cramps and they would very in level on and off. After a year of these pains and multiple testing (Including a lot of breathing tests/asthma which i was fine with all of and told I had very good lungs) to seeing a GI doctor that ordered blood work for me. It was then he informed me that I showed sensitivity to Celiac Sprue and I got an EGD and Biopsy done which confirmed it.
I have been gluten free for about three years now. I have been trying my best on my own to stick to a clear gluten free diet and use gluten free products. My stomach was feeling better, but my breathing still felt the same until this last december in 2011 where I started getting bad stomach pains again.
I've gone through another 2 additional EGDs, Colonoscopy, Esophogram, Barium Swallow, Upper GI w/ lower GI follow through, Hida Scan, Food Emptying test and maybe more that I can't think of. Only thing thats shown is my damage villa and gasritis.
My symptoms have gotten worse though. Mostly having to do with my throat and mouth area. I started having difficulty swallowing and had a lot of burping/gas. My throat is always red and I always have white goop in the back of my throat and my tounge is coated and will sometimes get these spots over it and will feel really soar.
My GI doctor says Its reflux and so has my ENT. I saw a surgeon about possible surgery for such a problem, but when he looked over my tests he said there is zero evidence of such a thing occuring.
I can barely eat a lot of food that doesn't bother me and my throat and I'm taking 150zantac x2 and a 40mg ppi x1.
I'm losing weight because I can't eat much and weigh 117 pounds and I am 5-8"
Ontop of this I just found out I am in stages of osteoporosis and am actually about to get what I think is called a reclapse? In about 2 hours.
Has anyone had these sort of problems with Celiac Disease, or has anyone done anything that has helped them ?
At 21 years of age I just feel like my life has been cut short of who I once was because I always feel miserable.
I don't go out much because of my problems and its hard to enjoy anything.
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Sniffy911 added a topic in Celiac Disease - Teenagers & Young Adults OnlySymptoms....am I Doing Everything ?About a year ago I was undergoing my first real bad sickness, a sinus infection. Eventually one night I started to burp a lot and I lost my breath...Since then for a year everyday I live with a shortness of breath, sometimes its not that bad (but i'm still not breathing normal) and other times its a struggle to get a breath. It doesn't seem life threatening, because i'v never had to go for the hospital for it, or have passed out. I under went a lot of tests and back about agust 26th of this year, I found out that I had celiac Disease. Since then to today I have been doing a gluten free diet...Purchasing gluten free items, items that arn't processed where wheat is and etc. I'v also been making myself my own food. I have been on this diet for about a month now, and I'm not seeing any improvements. I also seem to maintain a lot of phlegm goop as well as yellow goop here and there. This all started when I was 17, and I'm now 18. I often feel a lot of goop in my throat that feels almost impossible to get rid of. I feel as if I breathe, and I feel it in my throat.
This has gotten on my nerves not being able to fully breath probably, and makes a lot of things difficult for me, especially experiencing all this goop, i hate it...
Can this all be occuring because of my celiac disease ? Before I was diagnosed with celiac disease I ate out a lotttttt, with a pretty bad diet.
Can anyone relate to this feeling, or maybe something is actually triggering all these issues I have ? Like I said its been about a month with no improvements, I also get the bloating and stomache pains which are horrid ontop of the shortness of breath, and sometimes I have to spit a lot.
I go to school, and I work a lot of hours, and its hard to get by when you feel this shortness of breath all the time and feel congested and tight chested.
Other Symptoms include : Ear Pressure / pain, Watery eyes that I have to shut and I get a tremor sorta feeling through my ears/head at the same time. Hard to focus.... I'll try looking at something say right now at the computer screen, and I get a feeling of fog like i can't focus clearly on the screen, and often feel like i lose my train of thought, i'll feel out of it, i feel dizzy, and sort of disoriented, I really hate this feeling, because it sorta just makes you feel like your isolated and things are a blur to you while someone else may see things clearly/ I'll get muscle pains, and Tingly and shaky. Often have stomache pain feelings like....i can't let my stomache hang because it'll hurt, but also I just can't relax it cause i feel pain. I feel tired and weak.
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Sniffy911 added a topic in Celiac Disease - Related Disorders & ResearchHistory...and Can These All Be CausesFirst off, I'm newly diagnosed Celiac Disease patient for about a month now, and I'm also new to the fourms.
Now....IDK how much of this history may relate, or cause other problems that lead up to when i began having problems, but I have been assured it hasn't added to my Current situation, and just want to get some feedback from the general public and people who have coped with problems...
Last year, In September one night, I layed down to go to sleep and instantly got this pain in my left arm...and all of a sudden, I lost my breath and started to become really gassy, burping, everything. During this time I was also undergoing a Sinus Infection. I started to have a panic attack and went to the E.R. They just said I had a sinus infection and sent me home with some meds to clear it up. My sinus infection Cleared up, but I still had this shortness of breath that would get on my nerves...Later on I would start to experience stomache pains, and some heart burn. I would also feel this thing like a lump sitting in the back on my throat all the time. This became very uncomfortable for the face that my throat hurt, I have a constant shortness of breath, and heart burn and burping. I was miserable. I was put on Omeprazle being told it was probably Acid Reflux....
This medication seemed to dull the pain for a little, but not for long. I started having all the chest pains come back....Which includes a feel of bloading, where my stoache feels so tight but and the same time, hurts when you just let it hang. Also my chest has always been really tight, and I always have phlegm or a sensation of mucus in my throat and chest. One of the doctors gave me the "Its all in your head" speech. I was not convinced though...So i'v was sent nemerous places...Ent, Pulminary, both saying they can't find anything wrong....I had Throat Xrays, Chest xrays, Chest CT scans, upper and lower GI xrays, Sinus CT scans...All came out fine...So i finally got sent to a GI doctor about 11 months while all these problems were reoccuring.
He gave me a massive list of bloodwork to get done. I got the results of everything coming back clear, but traces of Celiac Sprue in my blood. I then got an endoscopy scheduled about 2 weeks later. From that they took biopsies, but from the initial search he said I was fine. When the biopsies were tested it was confirmed I had Celiac Sprue, and I have been on a diet for about a month with no changes as of yet....
This all occured when I was 17, and shorly turned 18 about 4 months after the symptoms I have started. My senior year of High School was a wreck and I missed a lot of classes, but managed to graduate. I'm in college now and It just seems like the worst time to lose that feeling of being invincible, its making life just that much tougher....
So could Celiac Disease randomly come on like that, which is my question...Can it cause the lump in the throat, the constant tightness in the cheast, and not being able to breathe amazingly. Can it cause all these symptoms ? I also get stinging eyes where I have to shut them as they water and I feel almoster a tremor and my ears beging to feel pressure as well...and my ears will randomly feel plugged. I'v had allergy testing and I'm on a lot of allergy medication and getting shots for them. I am also scheduled to get a lung functioning test to see if asthma is a cause of my shortness of breath. I'v always have had horrible shoulder and back pain...I feel some Days that I'm going to die because its so horrible.
Just a month before all these problems though...I was depressed and went through a drug deal, where I digested morning glory seeds (which have mercury on them) and are susppose to give a LSA affect...I was told the poison would pass though from poison control, I threw it all up anyways. For a month after though I was fine....The same ole me how I always was feeling good ! My other friends that experienced this too are also all healthy, but it scares me because i feel like maybe I ruined my life from it....but I feel as if I had problems they wouldn't suddenly occur a month later, and I was diagnosed with Celiac Disease...
I just feel alone, and need some encouragement. I really don't feel anxiety, but I do feel trapped when I go places with my problems, because sometimes they act up or sometimes I could be having a good day. The constant shortness of breath though is constant...that really is my biggest concern because my lungs and etc are fine !Could I also be having some problems to other substances like Soy, that i'v heard a lot about ? Is there testing I can do that could distinguish problems from others ?
Plz help me !
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