So Confused.
Posted , 3 users are following.
You would think that as I nurse, I would have some insight or not be so confused about what is going on, but being on the other end (being the patient) is downright frustrating.
I've always felt like I'm more sore than the average person. I always have had minor aches and pains throughout my body, but just figured I was exercising too hard or whatnot. If you could only ask my husband how often I ask for massages, but that was just me. I've always had a lot of gas in my digestive system too, something my husband would hands down confirm.
Around the end of Jan (approximately 2 months ago), things just started to change. I wasn't sleeping well, I had a feeling of a lump in my throat, and a loss of appetite.
Thyroid? Negative. Acid Reflux? Negative. Mono? Negative. Post-nasal drip/allergies? Negative. The only things they found... Vitamin D deficiency, which I've had in the past and wasn't suprised about as I often forget to take Vitamin D on a daily basis.
Then symptoms got worse. Extreme brain fog, extreme fatigue, severly sore joints, chronic constipation, extreme nausea with subsequent weight loss. Difficult to maintain weight, even eating more "unhealthy" foods, still losing weight. In addition to sore joints, my muscles feel sore and easily fatigued and I have been getting tingling sensations throughout my muscles.
Symptoms of fatigue, sore joints/muscles, and a general uncomfortable feeling in my stomach are constant. Other symptoms tend to come and go. GI physician shocked me when he said it could be Celiac. So I got my blood work done, the results?
Tissue Transglutaminase IgA Ab 12.4
Tissue Transglutaminase IgG Ab 2.6
I understand other bloodwork can be done to look for Celiac, but I was told these results are negative (endoscopy/biopsy results still pending). Yet, most credible sources that I've looked say that <4 is negative, 4-10 is "borderline", and >10 is positive for IgA Ab. Yet, he said anything under 20 is negative. Is it possible this result is indeed positive? I was thinking, I've only had "severe" symptoms for two months or so... should I continue feeling this way, would the results then be high enough? I know Celiac typically goes undiagnosed correctly for years, but could the stress of a new job had triggered the gene to turn on? I don't feel particularly distressed (only that week or two of changing jobs). My mood and stress is fine now, except for feeling discouraged due to lack of an accurate diagnosis so far.
After the endoscopy/biopsy, he was very vague and said there was "some inflammation, but you're good to go home."
Not that I'd wish Celiac on myself or anyone else, but I'd be very discouraged to still feel this way with no answers. At least Celiac would be an answer to how I'm feeling. I've listened to other peoples stories and a few people have bascially described feeling how I'm feeling.
I guess I just wonder... has anybody else had a similar expierence? I have started a gluten-free diet (even if I'm not Celiac, it can't hurt). I know there is also Non-Celiac Gluten Sensitivities. I just can't understand the randomness and severity of some of these symtpoms and the vague-ness of my GI physician and conflicting lab values.
Additionally, my parents have been deceased since a very young age (MVA). All that I know is that my mother did have a lactose intolerance. I have already lived longer than she was able to, so maybe she would have had simiar problems had she gotten older? So much is unknown.
I pray for speedy and accuarate answers, as well as progress towards healing and recovery from these symptoms.
1 like, 4 replies
FA54321 lunalove
Posted
Hi,
Two things spring to mind looking at your post, the first thing is, your biopsy results are pending. Don't completely rule out coeliac disease as blood work is not very reliable and you can get a lot of false negative results - you need to rely mainly on the biopsy results. They usually take a few weeks to get back to you with these results. My own blood tests were negative, but I was extremely anaemic and had very low vitamin d levels, and after the endoscopy, I was told I had coeliac disease.
Also, if it's not coeliac disease, have you looked into the possibility it could be fibromyalgia? As this can cause gastrointestinal disorders as well as lethargy and muscle pain and weakness - or indeed, you could have both (as do I) and it can be hard sometimes working out which symptom is caused by which illness.
lunalove FA54321
Posted
Fiona82003,
Thank you for responding. It's discouraging because the GI doc told my family it doesn't look like celiac. But then again, if I haven't had long-standing damage... maybe it would be so apparent through the scope? Hoping some information will come once I the biopsy results post. Primary doctor suggested the presence of a cancerous tumor could cause the symptoms, which is very frightening in and of itself. Gonna wait to see the endoscopy results before proceding to get that checked out. Another thing that has been most challenging is trying to maintain my weight. It's been very hard for me to keep on weight. I try and not think "why me?" But I just can't understand why all of a sudden I started getting naseous and all these symptoms. I'm less stressed than I have been in the past and it's like, I'm not making these symptoms up. I honestly just started feeling so many things I can explain.
lunalove
Posted
Wow though, did a little reading on fibromyalgia and I'm shocked, it to explains how I've been feeling lately. I'll be 25 in a few months and it's awful to feel like my life is falling apart. Im trying to stay mentally strong, but it's difficult when I feel like a burden to my husband.
FA54321 lunalove
Posted
I would wait for your results and try not to worry. I don't think your doctor should have been alarming you with that sort of information - at this stage anyway. You can have all those symptoms you're having with fibromyalgia and also coeliac disease. When you get your results, let us know what they say. I hope everything goes well for you. By the way, if it does turn out to be fibro, there are things you can do to manage your condition. Take care.