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Immune Problems - Does This Match Others Experience?
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Does this match with anyone else’s experience?

 

Until I went gluten-free two years ago (something that has transformed my health), I’d been chronically under par for nearly 15 years with recurring swollen neck glands, sore throat, conjunctivitis and exhaustion. I thought this was an immunological problem caused by having toxoplasmosis shortly followed glandular fever in my late 20s.   

 

The crisis point (which led to the gluten-free diet) came after the usual symptoms appeared  towards the end of holiday in France where I had been eating bread at every meal, which was very unusual for me. I developed an odd abdominal pain, which over the next few weeks got to so bad I could hardly walk and I ended up  in hospital on morphine. I recovered by not eating. Over the following months, I relapsed every time I got my appetite back. During that time, my weight dropped drastically and I developed a bend in my spine, I guess  from malabsorption. Doctors were confused. I cut out gluten from sheer desperation in case it helped. By the time an endoscopy and biopsy appointment came through, I was perfectly well (and had been pretty much gluten free for over the 6 weeks necessary). There was visual erosion of the duodenal folds but the biopsy was normal.

 

Like many people who are not 'officially' coeliac I struggle at times to not have a proper diagnosis but  feel so healthy now and the ill- effects when I do get accidently 'glutened' are so bad that I don't feel there is any doubt about avoiding gluten.

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This sounds somewhat similar to my case. 

 
I'm a active 42 year old male and since my teen years I had chronic fatigue, sore throat, swollen glands in my neck that would come and go (more coming than going in the last 10 years). I have been to no less than 8 ENT's and even had my neck glands biopsied (once at 21 and once at 31), both times they both came back as normal reactive glands, but there was a mystery to what they were reacting to? Every time I went to one of my many family docs, they said it was just allergic rhinitis and prescribed a steroid and a antihistamine (the steroid used to work a little, but the antihistamines never worked).
 
I have been to rheumatologists, oncologists, infectious disease docs, had numerous cat-scans, mri's, you name it and I had it! Most doctors would prescribe antibiotics, allergy meds and some even wanted to put me on antidepressants and anxiety meds!
 
Last year I asked my doctor about an allergy to wheat because I like my micro-brews; he said there is a blood test for a disease called celiacs, but I didn't need it because I wasn't having any stomach issues....Fast forward to a couple of weeks ago and I went to the family doctor with major upset stomach, back pain, rib cage pain and gas issues (along with my "normal" tennis ball-sized neck glands), and he said I probably needed my gallbladder out?? Before I went to that appointment I did a little research on celiacs and demanded a blood test for it and sure enough it came back positive!
 
I'm almost positive that celiacs was my problem the whole time. I'm in my first week of being gluten-free and I'm not feeling better yet, but my issues have been going on so long, I guess I will have to give it some time to see improvements. I'm so frustrated, but I'm happy to finally have a diagnosis I'm looking forward to feeling healthy again....
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    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
    • Welcome!   I am confused.  Did you have a negative celiac blood test or a negative biopsy (taken via endoscopy)?
    • In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them. Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling. Hang in there it will get better.
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