Requesting Advice

[healthy-dreamer]

Hi everyone. I've been struggling with various symptoms for a while now and have been driving myself crazy worrying about all the possible diseases I could have. Just recently I read an article about celiacs disease, and it felt like the pieces fell into place. I'm just hoping for a little advice as to whether my symptoms really do fit, or if I'm just thinking wishfully.

I'm in my late 20's, but for my whole life I've suffered from loose stool (not what I'd consider diarrhea, but sometimes close). I've never really thought anything of it, because it's always been that way, and there were never any other symptoms like bloating or pain). I've also suffered on and off from bad breath.

About 5 years ago after a trip to Mexico where I was sick with a flu and very stuffed up I developed a persistant nasal drip and blocked ears (I can hear a sticky sound when I yawn and swallow). This became quite a nuisance requiring regular throat clearing. I was sure it came about from when I was sick, but my doctor dismissed and treated it as allergies, diagnosing nasal spays - these didn't really help, so I just lived with it.

More recently in the last 6-12 months I started to get a strange tingling / gushing sensation in both my feet. Within the last 3 months I decided to try a dairy free diet for my nasal drip, but instead of getting better, I started getting a hard to describe light-headed or foggy (not sure if that's the right word) sensation that comes and goes to varying degrees, lasting anywhere from hours to days at a time. The doctor didn't offer any help, although I've had bloodwork done for diabetes, LFT, calcium deficiency, CBC, and a couple of other things I can't remember. My LFT came back with elevated levels (I wasn't told any specifics), and will be going back for another blood test in a couple of weeks to see if they have returned to normal. I've also more recently been waking in the morning with pins and needles / dead arms, as though I've been sleeping on them, but I always wake up like this lying on my back and turning on my side quickly resolves the 'deadness'. I'm also slightly shakey in my fingers, and generally feel like my nerves are out of wack.

My biggest fear was MS, but after reading up on it, I'm almost certain my symptoms don't quite fit, as the pins and needles don't come on randomly, and seem to affect both sides of my body equally. My doctor hasn't even mentioned celiac's disease, but it seems to me to fit many of the symptoms quite well.

I've already started avoiding gluten because at this point I feel like I need to take action, although after reading a few posts I know many of you will suggest I get tested, so I'm considering starting to eat gluten again and asking my doctor to do the full slew of tests. My doctor didn't even test me for B12 or vitimin D defficiency, and I'm wondering if I should request these as well, in case I'm not absorbing them properly (hence my nerve issues).

Thanks for taking the time to read my woes, and I look forward to any further insights and advice any of you can give me.

[SMDBill]

Wow, your symptoms are very similar to mine, particulary the sinus problem. I did not even know it was related until I had gone gluten-free for a bit. I started to notice I no longer had severe post nasal drip, worst in the morning, followed by it constantly throughout the day which required throat clearing nearly every minute. When I realized I had stopped doing it, I think I had been gluten-free for a week or two. It was just gone and I felt like my sinuses were finally dry. While I had the symptoms, I could hear like a popping/crackling in my ears sometimes as well, similar to when you have a sinus infection that is pretty severe. When I got glutened, the symptoms returned. Not as heavily as before because it was an isolated event, but I had the drip and throat clearing return and knew immediately it was from the gluten.

The light headedness/brain fog could just be a gluten reaction and not related to the dairy. I'm lactose intolerant so I mostly avoid milk, although it is an ingredient in some things I eat. I can apparently tolerate very small amounts, but large amounts are quite different. The brain fog left when I went gluten-free and returned after glutened. I also experience tingling/weakness in muscles, but mine are in my arms, mostly my forearms on top. Those muscles still hurt some after glutening going on 2 weeks ago so apparently muscle pain is my last symptom to go after ingesting gluten.

I hope you do find a positive answer, but if you get no satisfaction from a doctor and go gluten-free on your own, the feeling of better, worse or no change will be the biggest clue into what's wrong. I'm already gluten-free and will be tested Monday, or setup for testing, and will then know which vitamins I am deficient in. Best of luck to you and don't hesitate to ask more. We all seem to have varying symptoms so there's always someone around who has felt like you may be feeling.

[GFinDC]

Hi,

It is a good idea to get your vitamins and mineral levels tested. For the celiac antibody testing it is important to keep eating gluten right through the testing. After all the testing is done you can go gluten-free right away. It is also a good idea to write down your symptoms before you go to the doctor so you don't forget to tell them something.

[Takala]

Get a full celiac blood panel run.

Be aware that some of us with neurological symptoms don't test out easily to confirm. After testing, stick with the gluten free diet since you are having a good response, and you should be able to avoid the complications of long term nerve damage. If your doctor is not responsive to your requests, find another one, if he/she is, search the internet for Dr. Hadjivassiliou's Pub Med and other articles online, if they need to be coaxed into understanding that celiac/gluten intolerance can show up this way.

[1desperateladysaved]

Hi everyone. I've been struggling with various symptoms for a while now and have been driving myself crazy worrying about all the possible diseases I could have. Just recently I read an article about celiacs disease, and it felt like the pieces fell into place. I'm just hoping for a little advice as to whether my symptoms really do fit, or if I'm just thinking wishfully.

I'm in my late 20's, but for my whole life I've suffered from loose stool (not what I'd consider diarrhea, but sometimes close). I've never really thought anything of it, because it's always been that way, and there were never any other symptoms like bloating or pain). I've also suffered on and off from bad breath.

About 5 years ago after a trip to Mexico where I was sick with a flu and very stuffed up I developed a persistant nasal drip and blocked ears (I can hear a sticky sound when I yawn and swallow). This became quite a nuisance requiring regular throat clearing. I was sure it came about from when I was sick, but my doctor dismissed and treated it as allergies, diagnosing nasal spays - these didn't really help, so I just lived with it.

More recently in the last 6-12 months I started to get a strange tingling / gushing sensation in both my feet. Within the last 3 months I decided to try a dairy free diet for my nasal drip, but instead of getting better, I started getting a hard to describe light-headed or foggy (not sure if that's the right word) sensation that comes and goes to varying degrees, lasting anywhere from hours to days at a time. The doctor didn't offer any help, although I've had bloodwork done for diabetes, LFT, calcium deficiency, CBC, and a couple of other things I can't remember. My LFT came back with elevated levels (I wasn't told any specifics), and will be going back for another blood test in a couple of weeks to see if they have returned to normal. I've also more recently been waking in the morning with pins and needles / dead arms, as though I've been sleeping on them, but I always wake up like this lying on my back and turning on my side quickly resolves the 'deadness'. I'm also slightly shakey in my fingers, and generally feel like my nerves are out of wack.

My biggest fear was MS, but after reading up on it, I'm almost certain my symptoms don't quite fit, as the pins and needles don't come on randomly, and seem to affect both sides of my body equally. My doctor hasn't even mentioned celiac's disease, but it seems to me to fit many of the symptoms quite well.

I've already started avoiding gluten because at this point I feel like I need to take action, although after reading a few posts I know many of you will suggest I get tested, so I'm considering starting to eat gluten again and asking my doctor to do the full slew of tests. My doctor didn't even test me for B12 or vitimin D defficiency, and I'm wondering if I should request these as well, in case I'm not absorbing them properly (hence my nerve issues).

Thanks for taking the time to read my woes, and I look forward to any further insights and advice any of you can give me.

I think you should be checked for parasites. In Mexico you could have picked some up. If you do have celiac, you could be more susceptible to them. I think they can cause some congestion and illness . I think it a good idea to consider celiac.

[healthy-dreamer]

So I just came from a visit with my GP, and he completely dismissed the possibility of it being Celiac. He said I would have diarrhea, bloating, stomach pain and blood in my stool and that my symptoms would be much more severe. He even said loose stool is perfectly healthy in many cases. Instead he thinks all my symptoms are caused by anxiety (I really don't generally feel anxious, although all these symptoms aren't helping!). He refused to even humour me with running a celiac blood panel, and the only thing he would add to my upcoming blood test was for B12. Very frustrating to say the least.

At this stage I think I'm going to try gluten free for at least a couple of months and see how I feel. Wish me luck!

[tom]

Ugh, another Dr thinking celiac symptoms fit in one tiny specific box, while we know they can be all over the map.

Good luck w/ getting relief from gluten-free, whether celiac or not. Remember that simpler, whole foods are better for us than highly-processed gluten-free substitutes.