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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 figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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