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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Could This Be Celiac - Long List Of Symptoms - Please Help
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45 posts in this topic

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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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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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.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
 

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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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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.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-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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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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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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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
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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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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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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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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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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.gov/medlineplus/ency/article/003535.htm.

 

Colleen

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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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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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When I wake up in the morning i never wake up feeling refreshed it is like being hit by a truck, really hard to get up every morning and always with the hangover feelings. I am on gluten free diet for only second day but my symptoms seem worse today very bloked ears and feel very tearful. Does anyone recognise these as withdrawl symptoms, is it normal to feel bad or worse for a period. Thanks for the help. I also forgot to mention there is alot of tension in my body and i have these really dark periods where I feel like there is no hope etc.

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Withdrawal is unfortunately an all-too-common side effect of ceasing to eat gluten.  Studies have shown that it can act as an opioid to the body and it's just like withdrawing from drugs, nicotine and alcohol for some people.  Generally lasts for 2-3 weeks at most, so you just have to ride it out -- sory, no one has developed gluten patches :D   Just warn people that you will not be yourself (whatever yourself has come to be on gluten) for a while and not to take any notice when you bite their heads off :ph34r:   They might be surprised at the new "you" that emerges out the other side of this.

 

With any luck, the tension and the dark periods will go away too, along with the hangovers (but not the drinking ones!).  Refreshing sleep is when you know you are on the road to recovery :)

 

Hang in there, dude. because better days are in store if you do.

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I felt very tired and down during my second and third week gluten-free. I remember that feeling of exhaustion; for me, I felt really good at 1-2 months into the diet.  Hang in there.

 

Hashimoto's hypothyroidism slows your metabolism by about 10-15%. It makes food stay in the gut longer and often results in constipation. It also causes fatigue, low pulse and foggy thinking. It is more frequently found in celiacs than in the regular population.  Try googling the symptoms and see if it applies to you. If so, the tests to request are TSH (should be near a 1), Free T4 and Free T3 (should be in the upper 50-75% range of your lab's normal reference range), and TPO Ab (should be very low). Doctors will often dismiss thyroiditis symptoms if the labs are normal so get copies of your labs and research your results if you are not satisfied with the lab results.

 

Best wishes.

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Withdrawal is unfortunately an all-too-common side effect of ceasing to eat gluten.  Studies have shown that it can act as an opioid to the body and it's just like withdrawing from drugs, nicotine and alcohol for some people.  Generally lasts for 2-3 weeks at most, so you just have to ride it out -- sory, no one has developed gluten patches :D   Just warn people that you will not be yourself (whatever yourself has come to be on gluten) for a while and not to take any notice when you bite their heads off :ph34r:   They might be surprised at the new "you" that emerges out the other side of this.

 

With any luck, the tension and the dark periods will go away too, along with the hangovers (but not the drinking ones!).  Refreshing sleep is when you know you are on the road to recovery :)

 

Hang in there, dude. because better days are in store if you do.

Thanks for the support, do you recognise the hangover feeling and i get like a tingling in the face and head and migraine like headaches? thanks and all the best

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I think I have noticed an improvement over the last week since going on a gluten free diet, however this morning I had really bad head sensations, like head filling up with that builders expanding foam, block ears and nose, and the only thing I have eaten all day is a cadbury crunchie and a dairy milk chocolate bar.

 

This has confused me as the label on crunchie only listed milk as a warning for allergies, I am wondering if there is something in a crunchie other than gluten that I am intolerant or if this is wrong and cadbury crunchie does contain gluten.

 

Anyone have a reaction to this chocolate snack or know if this is a problem for people with gluten intolerance.

 

Thanks for any help.

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Hi marco

It could be that the bar was made on a machine that previously had gluten on. It will be cleaned, but some people are very sensitive. Cadbury should be able to tell you this. Check the Dairy Milk too.

It could be that you have other food intolerances, you could try a food diary, where you record everything you eat inc all ingredients, and mak a note of any symptoms each day and see if there are patterns.

You may have got some cross contamination from elsewhere, and your symptoms be nothing to do with the chocolate!

Hope you are feeling better

Mw

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One week is not very long on the gluten-free diet Marco.  It is really too soon to be expecting things in your gut to be settled down.  Here's the Cadbury info  page on gluten in their products for Australia.  Ingredients in products can vary by the country they are made in.  So if they were made elsewhere you should check ingredients there.  I found this info by searching on "Cadbuy gluten".  Many food companies make gluten information available on their websites now.

 

http://www.cadbury.com.au/products/gluten-information.aspx

 

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Thanks to everyone who has taken the time to reply to this post.

 

I wonder if anyone has any experience of this. I have mentioned before that I get these electrical type zaps in my head.

 

There is another way to describe it, it is like a seizure in the head, it is like you are temporarily going over the edge or your mind is kind of flipping over and it lasts only seconds but is very disturbing, like you are losing control of yourself or your mind, really hard to put into words.

 

I did some outside decorating on the house yesterday lifting heavy ladders and I got this sensation big time like worse than ever which makes me wonder if this is related to the spine or something like that.

 

Has anyone ever experienced anything like this after heavy workload or in tiredness.

 

I am so confused by all this.

 

Many thanks again.

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Hi Marco,

 

Celiac may be causing brain symptoms for you.  Celiac can cause malabsorption of nutrients, (vitamins minerals), and that can cause all kinds of problems in the body.  It is a good idea to get tested for nutrient deficiencies if you can.  Since celiac damages the villi lining the small intestine, people are often low in the fat soluble vitamins.  The B vitamins are important for proper growth and function of the nerves.  There is also the possibility of  a direct attack on the brain by antibodies if a person has gluten ataxia.  Many times these  sort of problems resolve after being gluten-free for a while.  The body starts healing and can then absorb vitamins correctly again and the body starts to heal.  That can take months to happen though.  The nerve type issues may take longer to resolve.  Nerves grow slowly compared to other cells.  

 

This thread doesn't describe exactly your symptoms, but it does talk about some mental / brain symptoms.  If you search on gluten ataxia there is a lot of info on that also.

 

Short temper thread
http://www.celiac.com/gluten-free/topic/34917-anger-quick-temper-depression/
 

 

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Hi Marco,

 

Celiac may be causing brain symptoms for you.  Celiac can cause malabsorption of nutrients, (vitamins minerals), and that can cause all kinds of problems in the body.  It is a good idea to get tested for nutrient deficiencies if you can.  Since celiac damages the villi lining the small intestine, people are often low in the fat soluble vitamins.  The B vitamins are important for proper growth and function of the nerves.  There is also the possibility of  a direct attack on the brain by antibodies if a person has gluten ataxia.  Many times these  sort of problems resolve after being gluten-free for a while.  The body starts healing and can then absorb vitamins correctly again and the body starts to heal.  That can take months to happen though.  The nerve type issues may take longer to resolve.  Nerves grow slowly compared to other cells.  

 

This thread doesn't describe exactly your symptoms, but it does talk about some mental / brain symptoms.  If you search on gluten ataxia there is a lot of info on that also.

 

Short temper thread

http://www.celiac.com/gluten-free/topic/34917-anger-quick-temper-depression/

 

Thanks for that and the link, I have looked this up and this certainly could be what is happening.  However i have now been gluten free for about 10 days and cannot think why this would suddenly come and be worse than i have had previously, added to that i had done alot of heavy work which had made me very tired etc which is the only differant thing to my normal routine.

 

Does this happen when you have gone off gluten, the only other thing i can think is that I may have been glutened and that the reaction was worse because been off gluten, i mean glutened without knowing.

 

All very confusing.

 

Thanks again

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    • celiac disease is psychosomatic
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    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Sort of funny.  Says no wheat at the bottom but also says this " Other Ingredients: Proprietary Protein Blend (Soy Protein Isolate, Whey Protein Concentrate), Cocoa (processed with alkali), Inulin, Oat Fiber, Fructose, Natural Flavors, Maltodextrin, Soy Lecithin, Tricalcium Phosphate, Xanthan Gum. Contains milk and soy ingredients. Contains wheat ingredients.   I bet they do not use gluten free oats, so its a bit of a gamble.  Not one a Celiac should take as there is no such thing as "not severe Celiac".  Even if you don't feel the damage, consuming gluten will start damaging you.  Maybe its just catching up with you.
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