Could Use Some Encouragement
Posted 14 February 2013 - 02:33 AM
I confess that I'm nearly at wit's end. I've been sick for near two years now and everytime I research my problems, it seems I come back to gluten issues. A while back, I was tested for gluten sensitivity and was told it came back fine. I ( at the time ) trusted my dr and decided it was something else. Boy do I feel dumb after reading about the tests here on this forum.
Anyway, I feel like I should lose the gluten and I have to be honest, it sounds really hard! It's not that I have to have bread and whatnot, it's that I'm so ill most evenings, it's often hard for me to cook. I also deal with a good deal of brain fog that hinders my menu making abilities and that's when I'm just doing whole foods. I know it sounds lazy/obtuse because that only way I might get better is to just handle it. It's just that I'm so drained from fighting this for so long and with the possibility that tests will not be accurate... it kinda makes me want to cry. Will this just be another dead end? I guess that's my fear. I'll expend energy on something that has nothing to do with my symptoms. Logically, I get that things must be ruled out and that's what I try to focus on. Still, I'd like a gentle nudge so that I feel like I'm not the only one who thinks I might have Celiac disease. I'd like to share my troubles below if you are willing to give me your two cents. And yes, I do understand that none of you are Drs but I also realize that many of you may know more about Celiac than my own Dr.
I am drop dead tired most of the time, especially late afternoon and evenings.
I have off and on insomnia
I have what seems like eczema
I also itch where there is no rash. Especially, and oddly, my pinky teo. Drives me up a wall. Seems to act up when my feet get warm ( bath, socks, bed ).
I have IBS like symptoms that change nearly every day.
I don't really feel nausea but I often just have "yucky tummy". I hope you understand what I mean there... lol
I feel like food sits in my stomach far longer than it should.
I have mind fog/ feel slightly drunkish.
I used to love wine, now hate it. It just makes the tired/brain fog worse.
Low libido. Scratch that. NO libido. Having had a very healthy one before. I think this is the symptom my hubby most hates.
Aching joints on occasion. This will be one joint at a time. It will be gone or moved to another a day or two later.
Dry tongue, no matter how much water I drink. It -feels- dry even with a mouth full of water.
I was anemis a few years ago and then I had very low ferritin ( iron stores ). This is much improved.
Low Vit D
Low end of the labs normal Vit B
Rapid pulse (over 100)
And worst of all and this one is really hard to explain without sounding crazy. On occasion, I feel so tired, weak and out of it, I feel like I'm leaving my body. It's scary and makes me feel panic, or used to until I kinda got used to it. When I told my Dr, she decided I was depressed. I told her, "Of course I am! I'm sick everyday and can't be the mom/wife/person I used to be! Wouldn't you be sad too?" Ugh!
I used to have swollen glands( armpit and weirdly under my chin ), low fevers and thinning hair but those seemed to have cleared up as ferritin got better.
I think that's about it. I should also add that sometimes I'm blessed with a day where I feel well enough to wonder if I had just imagined all these symptoms. I sit there and think, "Wow. I feel totally normal. maybe I'm fine." It's not often but it happens and until recently, I used to think I was magically cured.
I think this post is more than long enough and if you made it this far, I'm impressed! If you agree with me and think more testing for celiac is called for, or even a gluten free trial, please let me know. Also, if you have any other ideas, I am open to reading those, as well.
Thank you for taking time to read this. It is greatly appreciated.
Posted 14 February 2013 - 06:47 AM
Even if all that come back negative, you could do a trial gluten free. A number of us here are self diagnosed, or diagnosed non celiac gluten intolerant or sensitive.
The effects of gluten can affect your brain and moods too. It all sounds pretty normal for some of the folks here.
Good luck, ask lots of questions, let us know how you get on
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
Celiac.com - Celiac Disease Board Moderator
Posted 14 February 2013 - 07:19 AM
And you aren't alone, and you are looking for a solution. You're doing the right things. Find a new doctor if this one wont run the tests. There are also online labs you can order the tests from (you go to a local lab for the draw).
Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND.
Responsive to iodine withdrawal for DH (see quote, above).
Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
Posted 14 February 2013 - 08:39 AM
Anyway, when my youngest son turned 5 he was diagnosed with celiac. I started to learn about it and realized I had all the symptoms. (almost all the same ones you describe.) I was tested and my blood test came back positive. My biopsy, however, was negative so the doctor concluded I did not have celiac. I went gluten free anyway and was feeling better within days and GREAT within weeks.
Get the tests (continue eating gluten until you are done testing) and then, regardless of the results, try the diet. Think of it as the final test.
While the diet took a few weeks to master, we don't miss the gluten at all. Never even tempted to cheat. Why would I? Who would trade one donut for weeks of feeling good every single day?
Posted 14 February 2013 - 08:49 AM
The gluten-free diet is absolutely worth trying after you've been re-tested, because the ultimate diagnosis is you responding to it. There are also some here who skipped the tests but just went permanently gluten-free and never looked back.
If you want or need the official diagnosis, though, get the full panel, maybe an endoscopy but then DO go on the diet. Now that all my joint pain is GONE, I only wish I'd done it sooner!
Diagnosed with wheat hates me 4/13
Posted 14 February 2013 - 11:26 AM
your symptoms sound a lot like mine. i too was told time and time again there was nothing wrong with me until i was told i had depression and given tablets. i never took them coz i knew if i was depressed it was because there was something wrong with me.
16 years later i finally get the tests and results - all negative!!!
ive been here since beginning of jan and been gluten and dairy free for about 3 weeks now ( with a few mistakes) my brain fog has definitely lifted, i feel happier about life,no dark irrational thoughts and no anxiety.
the rash on my palms ( ive had for 16 years) has calmed down considerably - really just dry skin now.
no reflux or heartburn problems.( except for a strawberry smoothie)
and the other morning i found myself in the bathroom cleaning my teeth thinking -wow! how have i got here, so quickly, without thinking about it , without listening to my joints creaking and clicking away, without staggering around the bedroom waiting for my legs to start working properly..
its been amazing really but im trying not to get too excited in case i jinx myself.
im waiting for food intolerance tests but i cant wait until the nhs sorts them out , so i went for it and started the diet. if you decide you want the tests for celiac you must carry on eating gluten.but its up to you- everyones different. many people on here are not diagnosed.
not everyone see,s results quicky either, i seem to have been lucky- there have been some downsides, insomnia for one, and vivid dreams and the odd "toilet problem" - which i never had before.but im putting it down to the change in diet
"will this be another dead end" maybe, maybe not - but at least you,ll know - just losing the brain fog helps immensely
hope this helps you with your decision, and good luck
Posted 14 February 2013 - 11:57 AM
Sounds a lot like gluten/celiac, thyroid or both and a lot like me.
Stick with this forum - the quality of the replies never fails to amaze me.
And welcome .
You mention joint clicking - used to get this for years. No pain, just popping, clicking joints especially first thing in the morning. (Ankles and knees.)
Happy to report since gluten free - 99% gone!
Another gluten symptom methinks!!!
Posted 14 February 2013 - 12:55 PM
I was always a petite person but now I'm too skinny. As soon as I went gluten free, and it has only been a little bit over three weeks, my rashes went away, less night sweats, sleep better, much less tummy troubles, no more migraines, my bones used to crack and they haven't at all now, less gas, almost normal stools, better mood (I was in a deep dark depression - everything was negative to me), more patience, better concentration but still no labido back yet. I just really want to gain some weight back so hopefully now that I am eating right, I will. I was never formally tested by bloodwork or endo but my doctor told me to try gluten free first because she is suspecting celiac and see how I feel. I also had to do a stool test to rule out blood which I haven't heard back from yet. But once I get back from vacation I'm calling the dr and telling her how much better I feel and I don't want to go on gluten again for the tests.
Posted 16 February 2013 - 12:16 PM
Thanks to all of you for replying. I've read through everything and will certainly be asking what tests were actually done for me. I also know the first thing they suspected was thyroid but I'm unsure as to which tests they ran. They simply told me that my thyroid was fine. I've had more blood drawn than I care to remember, to be honest and I absolutely hate needles. I have to use the special lay down chair in case I pass out. So fun!
Anyway, thanks again for the input. I feel a bit better about bringing the topic up again with my dr.
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