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Could This Be Celiac - Long List Of Symptoms - Please Help


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#1 marco

 
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Posted 16 April 2013 - 02:36 AM

I have have a lifetime of problems, I very rarerly get ill with colds etc but have had problems since being a kid that have very badly effected every aspect of my life, and because of my symptoms I cannot hold down a job or enjoy life.  I was wondering if anyone can relate to any of this?

 

As a child I had slow thought processes and not able to think quickly, it was as if in a dream state most of the time, I had a very sweet tooth and eat a large amount of sugar. I was always very sad and depressed and anxious as a child with low energy levels etc.

 

As a teenager I started to drink beer quite alot and my symptoms as a teenager were like as a child but worse, I started to get a permanent block nose, sinus issue and smelly solid lumps of Catarrh that used to come into my mouth. I used to binge drink to get away from the sadness i felt but when i look back now i think this was making me worse.

 

My symptoms as an adult are as follows, I will put the most common in list one and others that are not as regular in list two.

 

List one

Slow speed of thought

feeling confused and unable to make decisions

feeling of impending doom, like something bad will happen

Always tired

Slow movement and actions

Foggy or muggy headed unable to think clearly

Always had Bloated stomach (thin frame as a kid but stomach distension)

Always burping or wind after eating

wake up every morning like i have a hangover (but no longer drink alcohol for past few years)

Fullness in ears which effects hearing

acidic eye fluid

large floaters in eyes that move around

unmotivated and depressed

very anxious and tension in body

loose stools but not diaorhea

roscea on skin top arms and top legs

very dry skin and brittle hair

the inside of nose is often very dry and i have urges to pick nose as uncomfortable

constant craving for sugar

Dehydrated all the time which is very hard to stop not matter how much fluids i drink

 

 

list two

Strange brain zaps - like an electric shock inside head that lasts seconds but is scary

feeling like someone is glasping the top of head pressure

pins and needles in feet and hands

sharp pain lower right hand side of stomach - stabbing pain

tension in shoulders etc

 

I have had all sorts of test done and nothing has been found. I did a home finger prick test for celiac and it came back negative.

 

The reasons why I think possible celiac.

 

I have had periods in my life where i have eaten no food due to illness and I have felt much better in myself. My grandfather had an intolerance to wheat and another relative has similar symptoms to me.

 

Thank you for any help in advance, it would help me greatly if someone could relate to all this and give me some advice.


 

 


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#2 janpell

 
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Posted 16 April 2013 - 11:05 AM

You should a lot like my son (in your younger years). He is 12 now. I pulled him off dairy and gluten and am trying (he isn't helping much on this one) to get him off of sugar and lower carb. Well, he has almost completely turned around in the past couple of months. His doctor wouldn't test him for Celiac despite being anemic and given he gets adequate iron through diet and supplements....I have no explanation for this. Protocol here is no intestinal issues no Celiac. He also takes a B complex, zinc, probiotic and fish oils. He is interacting a lot more and his stamina has increased substantially. He just had his hockey playoffs in the past couple months and he was the high scorer - he hadn't scored all season.


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#3 GFinDC

 
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Posted 16 April 2013 - 11:29 AM

Hi Marco,

 

your symptoms could certainly be from celiac disease.  You may also have diabetes.  You should get tested for celiac disease and diabetes IMHO.  Don't stop eating gluten (wheat, rye Barley)  until the testing is done tho.  If you do the results won't be accurate.  The home tests are a good thing, but they are only one test type.  Some people test negative on one test but positive on another type of antibody.  So getting a full celiac disease panel would be a good idea.    You should also get your vitamin and mineral levels checked.  Celiac disease can cause malabsorption of nutrients so you may be low on some critical vitamins.

 

There is a skin rash associated with celiac disease called dermatitis herpetiformis.  It is caused by antibodies in the skin.  They can test for it be taking a small skin sample near the rash.  This is another option for celiac disease testing, as only celiacs get DH.  So testing positive on either the blood antibodies or a DH biopsy is a positive diagnosis.  There is a subsection of the forum for dermatitis herpetiformis (DH) that has more information.

 

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/
 


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 marco

 
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Posted 16 April 2013 - 01:51 PM

You should a lot like my son (in your younger years). He is 12 now. I pulled him off dairy and gluten and am trying (he isn't helping much on this one) to get him off of sugar and lower carb. Well, he has almost completely turned around in the past couple of months. His doctor wouldn't test him for Celiac despite being anemic and given he gets adequate iron through diet and supplements....I have no explanation for this. Protocol here is no intestinal issues no Celiac. He also takes a B complex, zinc, probiotic and fish oils. He is interacting a lot more and his stamina has increased substantially. He just had his hockey playoffs in the past couple months and he was the high scorer - he hadn't scored all season.

Yes I am a bit of a loss to know what it is but will try a restrictive diet, I also had a malapsorption problem as a kid with fat, it sounds a bit gross but i used to bring up undigested fat in my mouth if i ate fatty things - does this happen with your son? Thanks for the reply.


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#5 marco

 
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Posted 16 April 2013 - 01:53 PM

Hi Marco,

 

your symptoms could certainly be from celiac disease.  You may also have diabetes.  You should get tested for celiac disease and diabetes IMHO.  Don't stop eating gluten (wheat, rye Barley)  until the testing is done tho.  If you do the results won't be accurate.  The home tests are a good thing, but they are only one test type.  Some people test negative on one test but positive on another type of antibody.  So getting a full celiac disease panel would be a good idea.    You should also get your vitamin and mineral levels checked.  Celiac disease can cause malabsorption of nutrients so you may be low on some critical vitamins.

 

There is a skin rash associated with celiac disease called dermatitis herpetiformis.  It is caused by antibodies in the skin.  They can test for it be taking a small skin sample near the rash.  This is another option for celiac disease testing, as only celiacs get DH.  So testing positive on either the blood antibodies or a DH biopsy is a positive diagnosis.  There is a subsection of the forum for dermatitis herpetiformis (DH) that has more information.

 

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/
 

Thanks for the reply, can fat malapsorption be a symtom of Celiac as well as i used to have trouble digesting fat as a kid and would bring up fat that was undigested in my mouth which was a bit gross - thanks again


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#6 janpell

 
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Posted 16 April 2013 - 02:31 PM

No to the fat absorption issue. But because I can't have gluten (and other foods) I jumped at pulling him off gluten without testing after meeting resistance from his doctor. My youngest son is also gluten intolerant and gets a rash when he consumes gluten. I hope you get it all sorted out. I get angry/irritable with gluten and wow, what a difference being off. I am now "normal".  Assuming you are in the US you probably have more control on requesting tests than here in Canada.


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#7 sisterlynr

 
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Posted 16 April 2013 - 11:17 PM

Several of your symptoms could be related to your sugar levels.  Have you been tested for low blood sugar or Diabetes?   I would suggest having your Adrenal glands checked also.  Have you been to an Endocrinologist?  He/she could check all of the above issues which could be glandular problems.  A check for Celiac would be advisable.

 

A family member was having the shooting/electrical type pain and she was having a type of seizure, now on medication.


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#8 marco

 
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Posted 17 April 2013 - 12:19 AM

OK thanks, I have in the past had a blood test for gluten and came back negative, but was told that it can be missed on blood tests. I stopped eating gluten yesterday and this morning I have terrible feeling all over my face and behind nose etc which is hard to explain, it is like a slight tingling and fullness feeling like someone has filled your head with that builders expanding foam and ears are blocking up, probably not the best description but hard to describe, are there any withdrawl symptoms when you withdraw from gluten? Also I forgot to mention my emotions are all over the place, if I watch anything slightly sad on TV it makes me tear up which I think is unusually for a guy. I did have a thyroid test many years ago and that came back negative.

 

The only other thing that has been mentioned is candida, but when i mentioned this my doctor laughed me out the room, he said if i had that i would literally be on my death bed with AIDS or something similar and that it was a bit of a scam to sell products as i told him i had seen it online.

 

Thanks for the help.


Edited by marco, 17 April 2013 - 12:45 AM.

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#9 marco

 
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Posted 17 April 2013 - 12:48 AM

You should a lot like my son (in your younger years). He is 12 now. I pulled him off dairy and gluten and am trying (he isn't helping much on this one) to get him off of sugar and lower carb. Well, he has almost completely turned around in the past couple of months. His doctor wouldn't test him for Celiac despite being anemic and given he gets adequate iron through diet and supplements....I have no explanation for this. Protocol here is no intestinal issues no Celiac. He also takes a B complex, zinc, probiotic and fish oils. He is interacting a lot more and his stamina has increased substantially. He just had his hockey playoffs in the past couple months and he was the high scorer - he hadn't scored all season.

Hi again, did your son ever have block ears, difficulty hearing, bad moods or aggressive behaviour? thanks for the help - just my own kids my son has hearing problems and his ears and nose are blocked alot of the time like me, my daughter has anger problems and is very withdrawn, and says she doesn't feel good about herself and is very unhappy although she is very beautiful, it is hard to understand.


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#10 Celiac Mindwarp

 
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Posted 17 April 2013 - 01:30 AM

Hi Marco

 

Sorry to hear you are having so many problems, and welcome to the board. I hope the folks here can give you some help. It sounds as if your doctor was very unhelpful. Did yiu ask specifically for a test for celiac disease? That should be fairly straightforward to do.

 

You said you stopped gluten yesterday and are having some uncomfortable symptoms - it is worth you knowing that some people get a period of 'gluten withdrawal' when they stop, as their body tries to adjust to the changes. These changes can also affect your moods and emotions, so that would not be especially unusual. Some people describe having lived with 'brain fog', where you can't think straight, and as this lifts, it can feel very strange too.

 

As G F in DC mentioned above, if you want to have testing, which would most likely be a blood test, and possibly a biopsy (where they take a few tiny samples of the inside of the higher up part of your stomach) then you do need to be eating gluten. If not, you can get a test which is negative when really you are positive.

 

Some people here have something doctors call 'Non Celiac Gluten Intolerance' (NCGI), which has many similar sypmtoms, but doesn't show up on celiac tests (as the body is not producing antibodies to 'fight' the gluten in the same way).

 

If you cannot get your doctor to run the tests, you could try the diet for several weeks (3-6 months) and see if you have any good changes.

 

It can be very difficult to go back to eating gluten later on, if you did decide you wanted to be tested, so ideally, get tested first. You might need to try a different doctor, as many of them do not know as much about celiac as they should.

 

Lots of people here have decided just to go ahead and try a gluten-free diet, and found it helps.

 

Do stick around and ask questions here, there is always someone who can help :)

 

Mindwarp


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- 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 Posted Image

#11 GF Lover

 
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Posted 17 April 2013 - 04:49 AM

Marco,

 

Your symptoms are familiar to me, including the face feeling and catarrh.  I do suspect autoimmune issues which celiac is one of many.

 

I can't really compare which things got better with me as I'm dealing with an additional illness but many things improved or resolved completely from going gluten free.

 

Like otherse said, I would definitely look into diabetes testing, have thyroid checked again and have your ANA checked.  The ANA, if positive will tell you there is an autoimmune issue.

 

Your health should be your priority now, do your testing, keep eating gluten if you plan on having the full celiac panel done and be your own advocate.  Always get copies of lab results to review and save.

 

Help thru these steps and future issues is always available on the board.  Please keep us posted on how things are going.

 

Colleen 


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HAVE A SUPER SHINY DAY

 

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#12 marco

 
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Posted 17 April 2013 - 02:38 PM

Marco,

 

Your symptoms are familiar to me, including the face feeling and catarrh.  I do suspect autoimmune issues which celiac is one of many.

 

I can't really compare which things got better with me as I'm dealing with an additional illness but many things improved or resolved completely from going gluten free.

 

Like otherse said, I would definitely look into diabetes testing, have thyroid checked again and have your ANA checked.  The ANA, if positive will tell you there is an autoimmune issue.

 

Your health should be your priority now, do your testing, keep eating gluten if you plan on having the full celiac panel done and be your own advocate.  Always get copies of lab results to review and save.

 

Help thru these steps and future issues is always available on the board.  Please keep us posted on how things are going.

 

Colleen 

Hi Colleen, thank your for taking the time to reply I appreciate it. I have started a Gluten free diet and will let you know if i see any improvements - I am not sure what you mean by ANA sorry what does that stand for? I have previously had a celiac blood test and was negative, although I still think that this is the problem, I am 90% sure that it is some kind of food intolerance as I always feel better on a restricted diet, although i am at a loss to understand why this is not showing on ant blood tests, my doctor treats me as though I am an attention seeker and says that it is all in my mind.

 

I also think there must be some link that my son has block ears and sinus issues, two days into my gluten free diet my nose seems to have cleared up, although because of my doctor, i am starting to doubt my own mind and wonder if it is in my mind as this has happened after i have cut out gluten.

 

Thanks again and all the best to you :)


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#13 GF Lover

 
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Posted 17 April 2013 - 03:28 PM

Hi Marco,

 

When you restricted your diet in the past did you cut out gluten?  This could be a possible reason for negative test results.

 

This will explain the ANA blood test. http://www.nlm.nih.g...cle/003535.htm.

 

Colleen


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HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

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#14 GFinDC

 
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Posted 18 April 2013 - 08:40 AM

Hi Marco,

 

I am going to assume you are asking about eating greasy foods?  There are w things can think of.  Gastroparesis is slow digestive processing.  Gastroparesis is really a symptom though, not a cause.  It could be caused by multiple things.  Diabetes or malabsorption, physical obstruction is even a possibility, Although I doubt it is that, or you would have the symptoms with any food.  Another possible issue is the  gallbladder.  People with celiac sometimes have issues with the gall bladder.  Gall bladder malfunction can make it hard to digest greasy foods.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#15 marco

 
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Posted 19 April 2013 - 12:23 AM

Hi Marco,

 

I am going to assume you are asking about eating greasy foods?  There are w things can think of.  Gastroparesis is slow digestive processing.  Gastroparesis is really a symptom though, not a cause.  It could be caused by multiple things.  Diabetes or malabsorption, physical obstruction is even a possibility, Although I doubt it is that, or you would have the symptoms with any food.  Another possible issue is the  gallbladder.  People with celiac sometimes have issues with the gall bladder.  Gall bladder malfunction can make it hard to digest greasy foods.

Thanks will look into this, yes as a kid I used to bring up big lumps of undigested fat, I know sound gross, but this did stop as I got older but still have the other symptoms, it is all very confusing.


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