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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.

My Psychologist Suggested I Have Gluten Intolerance
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Hi,

I am new to these forums, although I've been reading for a while. I seem to frequent every forum for every gastrointestinal disease except for stuff like cancer, because I am undiagnosed. I am due to see a gastroenterologist on the 21st. When discussing my symptoms, my psychologist (yes, I know this is weird given s he's not a medical doctor) suggested I might have gluten intolerance (she didn't mention Celiac but I know that is the consequence of gluten intolerance). Here are my symptoms:

- Constipation, diarrhea, bowel cramps.

- Stomach pain and reflux.

- Fatigue.

- Pain all over the body, hard to say if it's bones, joints or nerve pain.

- Feeling of overload.

- Psychiatric symptoms that are likely just psychiatric, eg. dissociation (I carry a diagnosis of dissociative identity disorder), but that have gotten worse over the past year.

- Irritability.

- Balance problems.

- Headaches.

I know not all of these signal Celiac disease, eg. the headaches and balance stuff, but I mention them because they've gotten worse or started along wiht the gastro symptoms. I was diagnosed with a vitamin B12 deficiency (which can explain these neuro symptoms) recently, but have been deficient in B12 for at least half a year (my former GP did not believe I was deficient enough). I heard somewhere Celiac can cause B12 deficiency, but so can other bowel disorders (eg. Crohn's).

What should I ask/tell the gastro doc when I see him? The nurses (I'm institutionalized for psych reasons) said I should only take my medication list and insurance card, but I would think I should take this list of symptoms too (I have it saved on my computer). Should I ask specifically about Celiac? My GP put something very strange int he referral letter; she thinks my shunt (for hydrocephalus) that runs from my brain to my abdomen, is causing trouble, which I've never heard of. My psychologist did tell the nurses that she thinks I might have gluten intolerance, so maybe they'll suggest I ask the gastro about that (a nurse will likely come with me to the doctor anyway). Any suggestions or advice are greatly appreciated.

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Welcome to the board. Wow you sure do have a good shrink! I had to educate mine. Celiac is much more than just a gut disorder. (I use celiac and gluten intolerance interchangably because IMHO they are the same thing) Celiac can cause the psychological issues you are dealing with, not always the case of course but many times we see great relief from those issues once gluten free. Do not go gluten free yet as you need to be eating gluten for testing to be accurate. False negatives even on gluten are not uncommon. Make sure the GI doctor runs a full celiac panel and make sure you stay on gluten until the endo is done if you are having one.

I hope you are feeling much better soon.

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Thanks for the welcome and advice. I know a lto of my psych issues could be caused by celiac. My psychologist has a relative with my primary psych diagnosis (autism spectrum disorder, the DID was diagnosed later) and this person improved dramatically once gluten free. I know that the evidence is inconclusive whether celiac is more common in autistics (it's an alternative medicine hype that a gluten-free/casein-free diet cures autism, but that was definitely disproven). I will definitely ask to be tested f or celiac. What is an endo by the way? Endoscopy?

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Thanks for the link. I'll look at it tomorrow. Off to bed now.

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headaches and balance issues are also common symptoms of celiac and/or gluten intolerance. Looks like you have more than enough symptoms to justify getting the full panel of blood tests and possibly an endoscopy. Even if the tests are negative, the final test is giving the diet a try.

Best of luck to you.

Cara

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I just had a quick read about DID and for our other members you might be interested (experienced) with some of these. We use the term 'brainfog' to describe many of these similar things. I've bolded the ones that I can related to.

Current memory loss of everyday events

Depersonalization

Depression

Derealization

Disruption of identity characterized by two or more distinct personality states

Distortion or loss of subjective time

Flashbacks of abuse/trauma

Frequent panic/anxiety attacks

Identity confusion

Mood swings[18]

Multiple mannerisms, attitudes and beliefs

Paranoia[20]

Pseudoseizures or other conversion symptoms

Psychotic-like symptoms such as hearing voices and other Schneiderian first-rank symptoms

* I was in early stages of this when I went gluten free - tied right in with a marked increase in panic attacks.

Self-alteration (feeling as if one's body belongs to someone else)

Somatic symptoms that vary across identities

Sudden anger without a justified cause

Spontaneous trance states

Suicidal and para-suicidal behaviors (such as self injury)

Unexplainable phobias *Driving, snakes/spiders/mice - don't think I'll ever lose these

Many of these symptoms seem a lot similar to what I describe as the brainfog and 'zoning out' that I use to do. But at the same time I got so sick of feeling like all I did was think about myself!@! Listening skills go out the window.

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...

- Balance problems.

- Headaches.

I know not all of these signal Celiac disease, eg. the headaches and balance stuff,...

Actually, balance issues and headaches are celiac symptoms. There is a condition called gluten ataxia where the ability to coordinate muscles is affected, causing difficulty walking, balancing etc. Migraines are reported by users on the forum too.

There are also withdrawal symptoms that some people get when first quitting gluten. Supposedly the gluten proteins are similar enough to opiate proteins (I think they are actually properly called peptides) to trigger opiate receptors in the brain. Then the theory is you can have withdrawal symptoms from stopping gluten due to those receptors not getting their "fix" anymore..

People on the forum have reported depression, anger, mood swings, brain fog, insomnia, nueropathy (nerve pain), muscle twitches, etc from gluten.

There seems to be a wide range of affects gluten can have on the brain and nerve system.

Some nerve symptoms can be caused by vitamin deficiencies also. Vitamin / mineral deficiencies can happen in celiac due to malabsorption from intestinal damage. A vitamin / mineral panel would be a good idea. And a celiac blood antibody panel.

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Thanks for the welcome and advice. I know a lto of my psych issues could be caused by celiac. My psychologist has a relative with my primary psych diagnosis (autism spectrum disorder, the DID was diagnosed later) and this person improved dramatically once gluten free. I know that the evidence is inconclusive whether celiac is more common in autistics (it's an alternative medicine hype that a gluten-free/casein-free diet cures autism, but that was definitely disproven). I will definitely ask to be tested f or celiac. What is an endo by the way? Endoscopy?

I had bipolar illness caused by celiac. There are also studies on gluten-triggered schzophenia. The schizophrenics were not celiac, only gluten intolerant. Do NOT let anyone tell you that serious mental illnesses cannot be caused by gluten.

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Many of these symptoms seem a lot similar to what I describe as the brainfog and 'zoning out' that I use to do. But at the same time I got so sick of feeling like all I did was think about myself!@! Listening skills go out the window.

Thanks. My main symptom is the full identity alteration thing though, which is not "brain fog". I did list dissociaitve symptoms on my list of symptoms for the GP because they did get worse over time.

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Actually, balance issues and headaches are celiac symptoms. There is a condition called gluten ataxia where the ability to coordinate muscles is affected, causing difficulty walking, balancing etc. Migraines are reported by users on the forum too.

Oh wow, didn't know this. I know that ataxia is a common s ymptom of more severe B12 deficiency, but not that it could be due to gluten itself in celiacs.

There are also withdrawal symptoms that some people get when first quitting gluten. Supposedly the gluten proteins are similar enough to opiate proteins (I think they are actually properly called peptides) to trigger opiate receptors in the brain. Then the theory is you can have withdrawal symptoms from stopping gluten due to those receptors not getting their "fix" anymore..

Oh okay. I did hear in the alternative medicine community that gluten is "addictive", but I didn't actually believe it due to it being from questionnable (alt med) sources. I unfortunately do not have the medical knowledge to understand the research into this are, if any exists at all.

Some nerve symptoms can be caused by vitamin deficiencies also. Vitamin / mineral deficiencies can happen in celiac due to malabsorption from intestinal damage. A vitamin / mineral panel would be a good idea. And a celiac blood antibody panel.

Yes, I have a diagnosed vitamin B12 deficiency (and iron I think). I will ask to be tested for other minerals/vitamins, but the B12 can't be tested reliably anymore since I'm on injections.

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Oh wow, didn't know this. I know that ataxia is a common symptom of more severe B12 deficiency, but not that it could be due to gluten itself in celiacs.

Oh okay. I did hear in the alternative medicine community that gluten is "addictive", but I didn't actually believe it due to it being from questionnable (alt med) sources. I unfortunately do not have the medical knowledge to understand the research into this are, if any exists at all.

Yes, I have a diagnosed vitamin B12 deficiency (and iron I think). I will ask to be tested for other minerals/vitamins, but the B12 can't be tested reliably anymore since I'm on injections.

Hi Astrid,

Here is a short abstract on gluten ataxia, but there is lots of info about it on the web.

Gluten ataxia.

http://www.ncbi.nlm....pubmed/18787912

Abstract

Gluten ataxia is an immune-mediated disease triggered by the ingestion of gluten in genetically susceptible individuals. It should be considered in the differential diagnosis of all patients with idiopathic sporadic ataxia. Early diagnosis and treatment with a gluten free diet can improve ataxia and prevent its progression. Readily available and sensitive markers of gluten ataxia include antigliadin antibodies. IgA deposits against TG2 in the small bowel and at extraintestinal sites are proving to be additional reliable and perhaps more specific markers of the whole spectrum of gluten sensitivity. They may also hold the key to its pathogenesis.

I didn't find the study I was looking for about opiates, but this one talks about effects on learning/memory in mice when given gluten derivatives orally.

Behavioral and pharmacological studies on gluten exorphin A5, a newly isolated bioactive food protein fragment, in mice.

http://www.ncbi.nlm....pubmed/11138726

...

Thus, gluten exorphin A5 has been found to produce various effects not only in the peripheral nervous systems but also in the central nervous system.

You might find this thread interesting:

Non-Specific White Matter On Mri? Anyone Else Have This?http://www.google.co..._PIk95XnPTmxxig

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Oh wow, didn't know this. I know that ataxia is a common s ymptom of more severe B12 deficiency, but not that it could be due to gluten itself in celiacs.

Oh okay. I did hear in the alternative medicine community that gluten is "addictive", but I didn't actually believe it due to it being from questionnable (alt med) sources. I unfortunately do not have the medical knowledge to understand the research into this are, if any exists at all.

Yes, I have a diagnosed vitamin B12 deficiency (and iron I think). I will ask to be tested for other minerals/vitamins, but the B12 can't be tested reliably anymore since I'm on injections.

[/quote

You can be tested, you need to have the blood draw right before a shot....good luck

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@gfindc: thanks for this info. I am going ot see a neurologist about my balance problems, and I'm going to mention to him that I have GI issues (if I see the neuro before my GI testing is done).

Btw, I didn't know I can be tested fo rB12 when having shots. I get shots weekly, so they should not have worn off by the time I get hte next shot. The Dutch B12 deficiency foundation people I talked to said blood tests make no sense if you'r eon shots, but maybe that's for treatment purposes only (that they have to take your symptoms as a lead rather than the B12 level).

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