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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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John17

Describing my symptoms. Does it sound like Celiac to you? Please help.

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Posted (edited)

Hey all.  Very first post on here.  This is going to be detailed and sensitive, but I'm so sick of my symptoms that I don't care.  

So I am currently waiting on an MRI, and up here in Canada the wait could be six months or more, depending on how 'urgent' my doctor's request is.  Good times.  So I possibly have six months to stew and wonder what the heck it is that I have. 

For some background: I have always had stomach issues.  I am lactose intolerant which many of my stomach problems have come from.  The majority of my siblings and my father all have it.  We all have sensitive stomachs in general.  I know that if I don't take a digestive pill and eat any sort of dairy, I will be paying for it later.  Anyways, over the last 4-5 years, I've noticed that my digestive issues and irregularity has been far, far worse.  Much more gas, much more constipation and diarrhea and way more foul smelling.  And it's not just when I have dairy.  It seems to come on randomly.. or at leas what I think is randomly.  I have also had pains on my left side that come and go.. sometimes hourly and sometimes off and on for weeks at at time.  It has got to the point that I was so sore in my upper and lower left abdomen that I've seen my doctor (on two occasions).  Both times, he diagnosed IBS and sent me on my way.    

Around the same time my non-lactose related stomach issues developed, I developed a rash in a very sensitive location (scrotum).  It's itchy as anything and I often scratch in my sleep.... so much that I cause cuts in my skin that take days to heal.  It is worse in the winter (dry) but recently I have also noticed that it's much, much worse when I consume carbs.  If I go on a guy's trip for the weekend, for example, and we have beer and pizza and eat sandwiches etc for lunches, it's absolutely horrible the next night.  The itch is so intense that I can't help myself.  I scratch and scratch till there's basically no skin left and it's so painful that I have to stop. Needless to say, the next day is horrible just walking around.  Been to the doctor for this one too, and he's sent me home with steroid cream, saying it's just eczema. The cream works for a couple days, then my body gets used to it, and it does nothing.  

I also have super itchy ears (q tips are almost orgasmic), ringing in my ears, and sinus issues (mainly only on my left side).  I get sinus headaches all the time (I had one that lasted almost the entirety of last winter).  I went to an ENT last year because the sinus headaches were so bad, but he sent me home saying it was just pressure changes/dryness due to the cold/dry winter.  

In the last year, I've noticed that I have canker sore outbreaks that happen almost monthly.  I will get 3 or 4 simultaneously, which is awful.  They all go away for a couple weeks, then I get 3 or 4 more (in different locations) and the process repeats. 

I've also been really tired and moody lately - although that could just be the byproduct of having a 4yr old an an 11 month old. 

My most recent symptom - the one that has spurred my doctor to send me for an MRI - was burning in my toes.  My toes were on fire for basically two weeks.  It started in my left foot then progressed to the right foot.  Then I started getting pains in my fingertips - first, the left, then the right.  They aren't sharp pains but almost like insect bites on the tips of my toes and fingers.  They are also very sensitive.  Sometimes simple things like opening doors is slightly painful or stubbing my toe on a plastic children's toy hurts when it shouldn't. The burning has since ceased but now I'm left with joint and muscle pain in both my toes and fingers.  My arms also ache and are weak from time to time, even when I'm not working out.  This symptom (toe/finger/arm pain) seems to change almost daily.  It goes from being totally noticeable to almost completely gone.  It was gone for a few days just last week, to coming back on Monday morning.  

Just in the last week, I've noticed a super bitter taste in my mouth, on the left side of my tongue.  It hasn't gone away and it's constant.  It's like I had too much pineapple.  

I've been looking at different diseases that the finger/toes issue could be and all that comes up are neurological diseases and brain tumors - all of which are scary as hell. The taste in my mouth isn't helping my fears.  The sinus headaches also don't comfort me at all.  

Then, today for some reason I put all my symptoms together and wondered if all this could be originating in my gut.  I researched celiac and on celiac.org I noticed that most (practically all) of the symptoms I just described are linked with late onset celiac in adults.  

So two questions:  To all those who suffer from this.. does any of this sound familiar?  Does this sound like things any of you experienced before being diagnosed?  

I am particularly worried about the pains in my fingers and toes obviously as it has to do with the nervous system.  Assuming it does have to do with celiac (or some other form of digestive issue that is inhibiting me from absorbing nutrients and vitamins) what supplements would you suggest I take.  

Any other advice would be very much appreciated.  

 

 

Edited by John17

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32 minutes ago, John17 said:

Hey all.  Very first post on here.  This is going to be detailed and sensitive, but I'm so sick of my symptoms that I don't care.  

So I am currently waiting on an MRI, and up here in Canada the wait could be six months or more, depending on how 'urgent' my doctor's request is.  Good times.  So I possibly have six months to stew and wonder what the heck it is that I have. 

For some background: I have always had stomach issues.  I am lactose intolerant which many of my stomach problems have come from.  The majority of my siblings and my father all have it.  We all have sensitive stomachs in general.  I know that if I don't take a digestive pill and eat any sort of dairy, I will be paying for it later.  Anyways, over the last 4-5 years, I've noticed that my digestive issues and irregularity has been far, far worse.  Much more gas, much more constipation and diarrhea and way more foul smelling.  And it's not just when I have dairy.  It seems to come on randomly.. or at leas what I think is randomly.  I have also had pains on my left side that come and go.. sometimes hourly and sometimes off and on for weeks at at time.  It has got to the point that I was so sore in my upper and lower left abdomen that I've seen my doctor (on two occasions).  Both times, he diagnosed IBS and sent me on my way.    

Around the same time my non-lactose related stomach issues developed, I developed a rash in a very sensitive location (scrotum).  It's itchy as anything and I often scratch in my sleep.... so much that I cause cuts in my skin that take days to heal.  It is worse in the winter (dry) but recently I have also noticed that it's much, much worse when I consume carbs.  If I go on a guy's trip for the weekend, for example, and we have beer and pizza and eat sandwiches etc for lunches, it's absolutely horrible the next night.  The itch is so intense that I can't help myself.  I scratch and scratch till there's basically no skin left and it's so painful that I have to stop. Needless to say, the next day is horrible just walking around.  Been to the doctor for this one too, and he's sent me home with steroid cream, saying it's just eczema. The cream works for a couple days, then my body gets used to it, and it does nothing.  

I also have super itchy ears (q tips are almost orgasmic), ringing in my ears, and sinus issues (mainly only on my left side).  I get sinus headaches all the time (I had one that lasted almost the entirety of last winter).  I went to an ENT last year because the sinus headaches were so bad, but he sent me home saying it was just pressure changes/dryness due to the cold/dry winter.  

In the last year, I've noticed that I have canker sore outbreaks that happen almost monthly.  I will get 3 or 4 simultaneously, which is awful.  They all go away for a couple weeks, then I get 3 or 4 more (in different locations) and the process repeats. 

I've also been really tired and moody lately - although that could just be the byproduct of having a 4yr old an an 11 month old. 

My most recent symptom - the one that has spurred my doctor to send me for an MRI - was burning in my toes.  My toes were on fire for basically two weeks.  It started in my left foot then progressed to the right foot.  Then I started getting pains in my fingertips - first, the left, then the right.  They aren't sharp pains but almost like insect bites on the tips of my toes and fingers.  They are also very sensitive.  Sometimes simple things like opening doors is slightly painful or stubbing my toe on a plastic children's toy hurts when it shouldn't. The burning has since ceased but now I'm left with joint and muscle pain in both my toes and fingers.  My arms also ache and are weak from time to time, even when I'm not working out.  This symptom (toe/finger/arm pain) seems to change almost daily.  It goes from being totally noticeable to almost completely gone.  It was gone for a few days just last week, to coming back on Monday morning.  

Just in the last week, I've noticed a super bitter taste in my mouth, on the left side of my tongue.  It hasn't gone away and it's constant.  It's like I had too much pineapple.  

I've been looking at different diseases that the finger/toes issue could be and all that comes up are neurological diseases and brain tumors - all of which are scary as hell. The taste in my mouth isn't helping my fears.  The sinus headaches also don't comfort me at all.  

Then, today for some reason I put all my symptoms together and wondered if all this could be originating in my gut.  I researched celiac and on celiac.org I noticed that most (practically all) of the symptoms I just described are linked with late onset celiac in adults.  

So two questions:  To all those who suffer from this.. does any of this sound familiar?  Does this sound like things any of you experienced before being diagnosed?  

I am particularly worried about the pains in my fingers and toes obviously as it has to do with the nervous system.  Assuming it does have to do with celiac (or some other form of digestive issue that is inhibiting me from absorbing nutrients and vitamins) what supplements would you suggest I take.  

Any other advice would be very much appreciated.  

 

 

Good news is, many issues can be found as celiac symptoms, I have heard of canker sores here before, rashes are common, lactose intolerance is VERY common as our villi get damaged and no longer process it, the sensitive stomach...well yeah if you can not digest and absorb foods you get food intolerance and sensitivities galore, will link at the end. Energy, skin, tingling, burning....nutrient issues from damaged villi...are mostly full spectrum B-vitamins and magnesium...the latter also causes the constipation while the gluten exposure can cause D.....Look up the symptoms of those deficiencies bet it matches. The nerve issue can also be gluten ataxia where you immune system starts attacking your nervous system also....some with celiac like me get this. SO this sounds like either celiac or another autoimmune disease. Here is the info on testing and for now start keeping a food diary and record what you eat and symptoms for doctor and your references. Keep eating gluten til testing is done, the primary test for this disease is just getting your blood tested so really quick.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary
 

Few things that might help, are supplementing for now, Liquid Health Stress & Energy in combination with their Neurological Support 1tbsp each 3 times a day for B-vitamins, See about a D vitamin also. Magnesium depends on bowel habits, if D is more of a issue try Doctors Best in the powder before bed. If constipation is a issue then Natural Vitality Calm, 1/4tsp (1-2g) starting, and each day up it that much til you reach full dose or get loose stools then back it back down dosing to tolerance.

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