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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.

Help Me Please. Really, Really Bizarre Symptoms.
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11 posts in this topic

I have been unofficially diagnosed for 8 months now. The reason I say unofficially is because my GI doctor (the second best in the country) says that my blood tests come out negative as well as my brothers and my dad's. However, our symptoms are so bizarre and directly related to when we eat gluten he says there is no need for an endoscopy, it's pretty obvious we have celiac disease or some form of gluten intolerance.

But I react badly. It's driving me insane literally. Whenever I eat gluten, I become absolutely insane. I become depressed (sometimes suicidal), angry, irrational, and anti-social. I get afraid of being around people and I lock myself in my room. I get paranoid and scared over everything. I become certifiable. When I'm strictly off for a good week or so, I am pretty stable and act normal and functional.

My dad has celiac disease and he found out the same time as me. When he eats gluten, he becomes even more insane than me. He even gets violent at times. However, he's becoming much more strict with what he's eating so he's doing a better job at being gluten-free than I am. He is like a whole new person (unless he lapses and gets glutened again).

My brother now thinks he has this condition too. He's had several manic episodes as a teenager and now that he's 23 he got his behavior under control but he looks terrible like I do. We're all having trouble with uncontrollable swelling, bowel problems, severe head-pounding migraines, tingling/numb limbs, itching, and psychological instability. My dad's mother had major health problems too with swelling and being sick constantly. She was obsessed with being healthy even though she was anything but (her diet was terrible) and she was kind of unstable too. She never knew she might've had celiac disease, and she died without knowing. My doctor thinks her bone cancer was celiac disease related. This is such a ridiculous and stupid disease. Does anybody else have experiences like this?

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These can all be sympoms of celiac. My question to you is- Why would you ingest gluten if it causes such horrendous problems? My suggestion- lok at gluten as poison like I do, and stop eating it. I hope you see the gluten free light!

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My question to you is- Why would you ingest gluten if it causes such horrendous problems?

I agree! Stay away from it!!

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I have read that in studies done at mental hospitals, if the patients were taken off common allergens, 80% went into remission. Why the mental health people in this country keep pushing pills instead is beyond me. Be glad you have an honest practitioner helping you!

I too have noticed that one of the ways I have been affected by celiac is through personality changes (irritability, anxiety etc.) as well as spaciness, brain fog, confusion, constant short term memory lapses and even the occasional "vision"--i.e., seeing people or things that weren't actually there. I also had a racing heart.

The good news is that by avoiding gluten all that has gone away--though for me it has taken going off all trace gluten as well to get rid of all the symptoms plus taking co-enzyme b complex. I have to avoid co-enzyme b complex with sorbitol. So I take tablets instead from Country Life.

The myelin sheath covering my nerves was down 50% roughly 4 years ago.

So, yeah, its serious. And yes do avoid the gluten. If you can follow a simple diet of basic good food (meat, vegetables, roots, squash, fruit) and try staying off all grains and sugar for a while to really heal since gluten intolerance often leads to leaky gut and a host of other sensitivities that could also be messing with your brain etc.

Fermenting my own yogurt for 24 hours also helps me--provides pro-biotics I need to be healthy.

Hope this helps!

Bea

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Hi RacerRex,

If you do a google on "schizophrenia gluten" you will find lots of hits. Seems there is a connection is some cases, but not all by any means. I am not at all suggesting you have schizophrenia! I am just pointing out that there are some mental conditions that gluten is linked too. So, the way I figure it, if gluten can be linked to schizophrenia, it doesn't seem a far stretch to think gluen could cause other mental symptoms. Depression or excitability or other affects perhaps. You will see people talking about "brain fog" in the forum quite a bit. I know I get brain fog and short term memory loss with glutening. Gluten can do some pretty nasty stuff to people, especailly over the long term if it is ignored.

Gluen intolerance linked to schizophrenia

Findings from their latest research demonstrate that about 30% of people who suffer from schizophrenia cannot properly break down the proteins found in wheat, rye, and barley gluten. When these people eat gluten, they suffer from intestinal damage similar to that found in people with untreated celiac disease. Such patients "might also benefit from a gluten-free diet," according to senior researcher and genetics reader, Dr Jun Wei.

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I also feel the same way if I accidentally eat gluten. It's terrible! I feel crazy, emotional, suicidal, tired, bloated, sick, and cry about everything. In fact, just recently, I was glutened and started crying in Carrabba's when the waitress brought me a salad that had a crouton sitting in the middle of it. I couldn't quit crying throughout the whole dinner, and I cried the whole way home.

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I have been unofficially diagnosed for 8 months now. The reason I say unofficially is because my GI doctor (the second best in the country) says that my blood tests come out negative as well as my brothers and my dad's. However, our symptoms are so bizarre and directly related to when we eat gluten he says there is no need for an endoscopy, it's pretty obvious we have celiac disease or some form of gluten intolerance.

But I react badly. It's driving me insane literally. Whenever I eat gluten, I become absolutely insane. I become depressed (sometimes suicidal), angry, irrational, and anti-social. I get afraid of being around people and I lock myself in my room. I get paranoid and scared over everything. I become certifiable. When I'm strictly off for a good week or so, I am pretty stable and act normal and functional.

My dad has celiac disease and he found out the same time as me. When he eats gluten, he becomes even more insane than me. He even gets violent at times. However, he's becoming much more strict with what he's eating so he's doing a better job at being gluten-free than I am. He is like a whole new person (unless he lapses and gets glutened again).

My brother now thinks he has this condition too. He's had several manic episodes as a teenager and now that he's 23 he got his behavior under control but he looks terrible like I do. We're all having trouble with uncontrollable swelling, bowel problems, severe head-pounding migraines, tingling/numb limbs, itching, and psychological instability. My dad's mother had major health problems too with swelling and being sick constantly. She was obsessed with being healthy even though she was anything but (her diet was terrible) and she was kind of unstable too. She never knew she might've had celiac disease, and she died without knowing. My doctor thinks her bone cancer was celiac disease related. This is such a ridiculous and stupid disease. Does anybody else have experiences like this?

You may be a member of my tribe, people with Asperger's. It is recommended that we give up casein (ie all dairy) and soy as well. I just found that my almond milk has soy lecithin in it; this may explain transitory feelings of rage I get in the mornings (which are the only times I have the almond milk).

In general, I agree with all the replies before, especially that of Bea (yolo). Go with simple, simple foods. Chicken, vegetables, fruits, rice or potatoes, spiced with salt and pepper only. Don't buy anything prepared, because you'll run into preservatives and MSG, which can also cause problems. Cook for yourself (and for your dad, and for your brother if possible) until you're feeling more stable. And see an allergist as soon as you can, because some of these reactions might be caused by food allergies. Good luck!

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I also feel the same way if I accidentally eat gluten. It's terrible! I feel crazy, emotional, suicidal, tired, bloated, sick, and cry about everything. In fact, just recently, I was glutened and started crying in Carrabba's when the waitress brought me a salad that had a crouton sitting in the middle of it. I couldn't quit crying throughout the whole dinner, and I cried the whole way home.

Wow that is pretty intense!

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Hi RacerRex,

If you do a google on "schizophrenia gluten" you will find lots of hits. Seems there is a connection is some cases, but not all by any means. I am not at all suggesting you have schizophrenia! I am just pointing out that there are some mental conditions that gluten is linked too. So, the way I figure it, if gluten can be linked to schizophrenia, it doesn't seem a far stretch to think gluen could cause other mental symptoms. Depression or excitability or other affects perhaps. You will see people talking about "brain fog" in the forum quite a bit. I know I get brain fog and short term memory loss with glutening. Gluten can do some pretty nasty stuff to people, especailly over the long term if it is ignored.

Gluen intolerance linked to schizophrenia

Findings from their latest research demonstrate that about 30% of people who suffer from schizophrenia cannot properly break down the proteins found in wheat, rye, and barley gluten. When these people eat gluten, they suffer from intestinal damage similar to that found in people with untreated celiac disease. Such patients "might also benefit from a gluten-free diet," according to senior researcher and genetics reader, Dr Jun Wei.

I recently found out it was linked to autism, but I've never heard the schizophrenia link! Well, this makes me feel better because I now know my emotions are not real. I thought I was crazy for thinking the gluten caused my emotional upheaval, even though the emotions happen after I get glutened and last for 5 days.

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I have read that in studies done at mental hospitals, if the patients were taken off common allergens, 80% went into remission. Why the mental health people in this country keep pushing pills instead is beyond me. Be glad you have an honest practitioner helping you!

I too have noticed that one of the ways I have been affected by celiac is through personality changes (irritability, anxiety etc.) as well as spaciness, brain fog, confusion, constant short term memory lapses and even the occasional "vision"--i.e., seeing people or things that weren't actually there. I also had a racing heart.

The good news is that by avoiding gluten all that has gone away--though for me it has taken going off all trace gluten as well to get rid of all the symptoms plus taking co-enzyme b complex. I have to avoid co-enzyme b complex with sorbitol. So I take tablets instead from Country Life.

The myelin sheath covering my nerves was down 50% roughly 4 years ago.

So, yeah, its serious. And yes do avoid the gluten. If you can follow a simple diet of basic good food (meat, vegetables, roots, squash, fruit) and try staying off all grains and sugar for a while to really heal since gluten intolerance often leads to leaky gut and a host of other sensitivities that could also be messing with your brain etc.

Fermenting my own yogurt for 24 hours also helps me--provides pro-biotics I need to be healthy.

Hope this helps!

Bea

Wow thanks! It's helping me a lot to realize I'm not the only extreme case.

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I have been unofficially diagnosed for 8 months now. The reason I say unofficially is because my GI doctor (the second best in the country) says that my blood tests come out negative as well as my brothers and my dad's. However, our symptoms are so bizarre and directly related to when we eat gluten he says there is no need for an endoscopy, it's pretty obvious we have celiac disease or some form of gluten intolerance.

But I react badly. It's driving me insane literally. Whenever I eat gluten, I become absolutely insane. I become depressed (sometimes suicidal), angry, irrational, and anti-social. I get afraid of being around people and I lock myself in my room. I get paranoid and scared over everything. I become certifiable. When I'm strictly off for a good week or so, I am pretty stable and act normal and functional.

My dad has celiac disease and he found out the same time as me. When he eats gluten, he becomes even more insane than me. He even gets violent at times. However, he's becoming much more strict with what he's eating so he's doing a better job at being gluten-free than I am. He is like a whole new person (unless he lapses and gets glutened again).

My brother now thinks he has this condition too. He's had several manic episodes as a teenager and now that he's 23 he got his behavior under control but he looks terrible like I do. We're all having trouble with uncontrollable swelling, bowel problems, severe head-pounding migraines, tingling/numb limbs, itching, and psychological instability. My dad's mother had major health problems too with swelling and being sick constantly. She was obsessed with being healthy even though she was anything but (her diet was terrible) and she was kind of unstable too. She never knew she might've had celiac disease, and she died without knowing. My doctor thinks her bone cancer was celiac disease related. This is such a ridiculous and stupid disease. Does anybody else have experiences like this?

Oh good Lord. Stay away from the gluten then, the blood tests be damned! If it makes you feel any better, that's what I did. I had a blood test turn out negative, as well as another test (although never the biopsy). And I just got so despairing over my painful "attacks" that I decided to get rid of gluten, just to see. I was getting hopeless. And whatdyaknow, all the digestive problems went away.

So yeah. If you can directly correlate feeling so bad with the gluten, I say definitely eliminate it, even if the blood test was negative. I get hopeless and extremely irritable when "it" is happening to me, but I figure it was because I was in such physical pain and turmoil that I was extra-edgy. You know, if someone looked at me sideways during one of my gluten pain/digestive 'attacks', I'd want to bite their throat. But again, I figured it was just because I was in pain and frustration. Who knows, maybe it is more.

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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