Opinions On List Of Symptoms?

[cardarlinow]

I have a list of some odd symptoms.  My doctor(s) haven't really seemed concerned and are taking a "wait and see" approach.  I did have a celiac blood test done which was negative.  I went to a G.I. doctor who didn't want to investigate my digestive issues any further with Celiac and thought that going ona  Vegan diet would be beneficial.  It was not.  In fact, it made some symptoms much worse.  I'm at a cross roads and not sure if I should continue to trust my current doctor whom I do have a good relationship with or if I should seek out a new doctor and try again.  So here are my list of symptoms...

 

Starting from about July of 2013.

* Mouth Ulcers (Recurring, with several weeks maybe a month in between episodes)

* Tingling and numbness in hands and feet ( constant numb big toes and had an EMG), was diagnosed with Peripheral Neuropathy, non diabetic, no known cause. I also wake up with numb hands often after sleeping.  I am not laying on them either.  There is no explanation for them being numb.

* Constipation and Diarrhea ( back and forth, and has been an issue for past 6 years)

*Iron deficiency Anemia (Score was 10, but doctor thought this could possibly have been causing my numbness and tingling sensations A.K.A. Nuero symptoms)

* Ocular migrains ( most of the time without pain afterwards.  Had MRI with contrast four years ago, one optic nerve is larger than other but "could have been born that way" since it doesn't affect me and never changed over checks throughout the following year.)

* I have bumps on my skin.  Very small.  One doctor in the past had said it was Milia, another thought it was Kertosis pilarius (sp?).  No doctors think it is a gluten rash... :|  It doesn't really itch but my skin is dry, so I itch it.  I have no idea if this is the gluten rash that I keep hearing about?  It is not red..just normal skin colored bumps. Mainly on back of arms and forearms.

*Sensitive skin on back.  If anyone pokes me or gently scratches my back, it feels like i've been beaten.  It takes about ten minutes for the sensation to go away.

*Sleep apnea ( obstructive mainly, possibly a mixture of central/obstructive.  Use an autopap as they couldn't find a set pressure for me)

*From a nuerologists thinking, my b12 and b6 levels were "deficient"  I was within normal range but under the range that neurologist prefer.

*My periods are regular but they are very heavy and short.  There has been an increase in pain with them as well and now have pain during ovulation as well. 

* Diagnosed with GERD in August 2013

 

I just wanted to lay it all out there.  I'm not sure if all or some of these sound like a gluten sensitivity or even Celiac disease or not.  I wanted your opinions, before I push again for a new doctor or a new G.I. doctor. 

 

Side note:  My mother is gluten sensitive.  She was tested by her cardiologist ( gene testing) and was found to carry the gene that causes Celiac Disease.  She however does not have Celiac Disease.  Just an intolerance.

I am a 29 year old female btw. 

[Fenrir]

Sounds like some of the symptoms you have are celiac like symptoms. I had some weird neurological symptoms with it but they are starting to get better. I had headaches, weird face pain (almost toothache pain but dentist said teeth are fine), brain fog, pin prick pains in random places, numbness lower legs/hands from time to time. So, yes, neurologic disease seems to go along with celiac, the symptoms sometimes can be improved by going gluten free. 

 

You should probably go get the standard celiac panel done. WIth DGP IgG and IgA,, tTG ...ect. 

[GF Lover]

Cardrlinow, Welcome to the Forum.

 

Since you tested Negative (you may want to confirm all of the Celiac tests were done) then maybe you are gluten intolerant like your Grandma.  It's called NCGI.  Maybe you could test the gluten theory.  Eat gluten free for at least 3-4 months.  Track your symptoms to see if anything improves.  This would be good information for you and your Doctor to have.

 

Good luck with what you decide.

 

Colleen

[cardarlinow]

I am not sure which blood test I had done for Celiac.  But after looking on this forum I did find a list of other blood tests that can be done and I plan on talking to my doctor again about it. 

I'm glad you mentioned the "pin prick" pains and sensations in random places because I do suffer from this as well.  My doctor is doing a "wait and see" for MS.  Because I have 4 family members with MS on my mothers side.  I find it interesting that that is also the side of my family that carries the "celiac" gene as well.  Connection?

 

 

My mother keeps telling me to just avoid the gluten and not worry about a diagnosis.  But I'm a little scared to do that.  She thinks if I wait long enough and off of gluten the symptoms will subside ( after a couple months)  But my thinking is.. "what if its not celiac?  What if its something serious like cancer or something thats causing this?" Sorry, thats a little paranoia speaking.. but how important do you think it is to push for a definite celiac diagnosis at this point?  If my current doctors dont seem concerned and are not intersted in celiac as a possibility at all?  I'm just at a loss.

[Fenrir]

  On 5/8/2014 at 11:56 PM, cardarlinow said:

I am not sure which blood test I had done for Celiac.  But after looking on this forum I did find a list of other blood tests that can be done and I plan on talking to my doctor again about it. 

I'm glad you mentioned the "pin prick" pains and sensations in random places because I do suffer from this as well.  My doctor is doing a "wait and see" for MS.  Because I have 4 family members with MS on my mothers side.  I find it interesting that that is also the side of my family that carries the "celiac" gene as well.  Connection?

 

 

My mother keeps telling me to just avoid the gluten and not worry about a diagnosis.  But I'm a little scared to do that.  She thinks if I wait long enough and off of gluten the symptoms will subside ( after a couple months)  But my thinking is.. "what if its not celiac?  What if its something serious like cancer or something thats causing this?" Sorry, thats a little paranoia speaking.. but how important do you think it is to push for a definite celiac diagnosis at this point?  If my current doctors dont seem concerned and are not intersted in celiac as a possibility at all?  I'm just at a loss.

 

I had a lot of paranoia as well before being diagnosed. My liver function tests were high so I was worrying about that. Before I any idea it was celiac I thought maybe I had a bad nerological disease or cancer but it wasn't that.

 

IMO, it is very important to get celiac either formally ruled out or diagnosed. If for no other reason, do it for anxiety issues. I feel a lot less anxious now that I know exactly what the problem is eventhough I could have gotten a good idea of what it was and just cut out gluten and been fine.

 

Celiac, Neurologic and other autoimmune disorders tend to run together, so it is possible to have celiac along with another disorder or celiac may be causing the neurologic issues on it's own. So, if you get DX'd with celiac you may find that your neurological symptoms go away with time.

 

A lot of people with celiac disease get wrongly diagnosed with things they don't have because celiac disease mimmicks a lot of things like MS, neuropathy, IBS, Crohn's, Ulcerative Colitis......ect.

[klisja]

I´ve been having numb hands and bad pains, usually in the right hand fingers, when I wake up or wake up because of it. I hadn't been eating gluten for a while when that started, I was drinking pure apple juice and/or vitamins. And it's most definetly food related, when I stop eating trigger foods I don't feel the nerve pain.

 

What is puzzling me is that the pain comes from other things that are supposed to be gluten-free but by googling the only food intolerant explanation is gluten.

 

I've had the bumps on the back of my thigs and butt.it got better going gluten free but are gone now after I started drinking lactose free milk.

[cristiana]

Apart from the skin bumps and GERD, I could be reading my list of symptoms, with perhaps a variation of the skin pain you mention in that for seven months now I have itchy nerve pain which at times affects the feeling of my skin on the left side of the torso, around ribs and also above the hip, like there is a rash there, but there isn't.  At times it is really painful, like a bruise.  A tight belt/bra strap really hurts and the pain lingers for hours.  I have been told it might have been shingles without the rash but no one is very sure.

 

I was diagnosed in April last year with celiac disease and went gluten free in May.  The numb hand thing on waking really began to play up before diagnosis.  I feel it does get worse with accidental glutening but sometimes I can't put my finger on it, no pun intended, maybe just sleeping in an odd position.   I have just got a diagnosis for that - ulnar compression.  I read somewhere that there is a link between carpal tunnel and Celiac, perhaps the same applies to ulnar compression? 

 

Like Fenrir says, good to get this gluten thing ruled in or out.  I too had weird liver function tests and even hallucinations on waking, with normal MRI scans (4!).  All generally improving since going gluten-free.  My nutritionalist says celiac is the Great Mimmicker.