Does This Sound Like Celiac?

[flash67]

i have schizophrenia and i was tested for celiac disease a couple of years ago, the blood test was negative. what are the chances that i actually have celiac disease? maybe i need another test? i'm pretty sure it's a food intolerance, just dont know what food. i heard celiac is more common for schizophrenics. i often get symptoms after certain foods. main symptoms are anxiety, depression, ocd, stomach pain, wind, nausea, vomiting, diarrhea, shortness of breath, feeling tired and weight loss.i also have back pain, not sure if that is related though.

[MySuicidalTurtle]

Blood tests can come back with false negatives. You could just have a food allergy, instead.

[cornbread]

Flash, what kind of tests did you have, can you remember? I would highly recommend testing with Enterolab (www.enterolab.com). They send you a kit and you send it back and then they email your results. Their test is very sensitive and only $99.

I have a relative with schizophrenia whom I have been trying to convince to take a gluten test, as we have multiple family members with gluten sensitivity/celiac.

By the way, I get aches all over if I have gluten or casein.

[Nantzie]

My grandmother had schizophrenia, and I've got several relatives with possible gluten problems, both neurological and digestive. I've also got a first cousin with multiple sclerosis.

From what I understand, there are basically two types of manifestations of gluten problems based on what genes you have.

With the HLA-DQ2 and HLA DQ8 genes, you're looking at celiac, and all the intestinal damage that goes along with it.

With the HLA-DQ1 genes, you're looking at gluten sensitivity, and may not have intestinal damage (actually, I don't think you get intestinal damage at all with the DQ1, but I'm not positive), but you have the more severe NEUROLOGICAL issues that go along with it.

I'm guessing you can have both types of genes and there is some crossover of symptoms, but more of a predominance of one over the other depending on what genetic markers you have.

Obviously, I'm not entirely up on the HLA-DQ1 aspects of gluten, but I know that there is something called "gluten ataxia" that is more part of the DQ1 genetic markers. I'm not sure if gluten ataxia is related to the gluten possibilities of schizophrenia, but you might want to do a search on ataxia on this board to see what comes up. The one person who wrote about it that made me take notice was someone who is now in a wheelchair because of it, but I don't remember the user name.

Hopefully someone else who has done more homework or had experience with this on this will jump in and be able to give more/ better info. I also remember someone mentioning another message board that tended to focus more on the neuro aspects of gluten intolerance.

Anyway, I'm glad you found the board and became aware of the possible gluten component to schizophrenia.

As you look through your family tree, do you see other people who you think may have symptoms of a gluten problem? I know for me, once I started learning more about it, it was all over both sides of my family.

Nancy

[cornbread]

Hi Nancy,

You make an interesting point. I actually have 'the set' ... a DQ2 (celiac) and a DQ3 (gluten sensitivity - like a DQ1) gene. My mother has double DQ3's and my father has double DQ2's. My symptoms are a little of both, although most severely the non-gastric stuff. We should maybe start a poll, for those who know their gene types - what kind of symptoms do you have?

a ) mainly gastric

b ) mainly neurological

c ) a mix

d ) asymptomatic

[ravenwoodglass]

i have schizophrenia and i was tested for celiac disease a couple of years ago, the blood test was negative. what are the chances that i actually have celiac disease? maybe i need another test? i'm pretty sure it's a food intolerance, just dont know what food. i heard celiac is more common for schizophrenics. i often get symptoms after certain foods. main symptoms are anxiety, depression, ocd, stomach pain, wind, nausea, vomiting, diarrhea, shortness of breath, feeling tired and weight loss.i also have back pain, not sure if that is related though.

<{POST_SNAPBACK}>

My DD gets schizo symptoms when she is on gluten. For 2 years before diagnosis she thought I was poisoning her and often had hallucinations of bugs. You do sound gluten intolerant from your other symptoms also, have you tried being gluten free? Many show up negative on blood tests, turned out I was tested repeatedly for 10 years and always showed up negative. Too bad no doctor ever suggested a gluten-free trial it would have saved years of pain and horrendous co-pays. Give a gluten-free trial a chance, it is the true test.

[flash67]

thanks for the replies everyone. i just had one blood test for celiac disease 2 years ago and i was told i dont have it. i often get stomach pains and diarrhea after certain foods, like chicken curry, pasta, and i felt my schz symptoms got worse after noodles. how long after going gluten free should i notice a difference? should i also avoid dairy foods? p.s i was recently tested for food allergies and it was negative.

[Rachel--24]

Hi Nancy,

You make an interesting point.  I actually have 'the set' ...  a DQ2 (celiac) and a DQ3 (gluten sensitivity - like a DQ1) gene.  My mother has double DQ3's and my father has double DQ2's.  My symptoms are a little of both, although most severely the non-gastric stuff.    We should maybe start a poll, for those who know their gene types - what kind of symptoms do you have?

a ) mainly gastric

b ) mainly neurological

c ) a mix

d ) asymptomatic

<{POST_SNAPBACK}>

Cornbread,

Yeah...this is what I've really been focusing my attention on lately. I have DQ1 and DQ3...hardly any gastro symptoms and they didnt show up at all until after I'd been sick for 2 years. I cant relate to the people who have to run to the bathroom after being glutened...thats only happened to me a handful of times. My symptoms are mainly neurological. It would be interesting to do a poll but I think the majority of people here probably havent had the gene tests....or maybe I'm wrong.

[Rachel--24]

With the HLA-DQ1 genes, you're looking at gluten sensitivity, and may not have intestinal damage (actually, I don't think you get intestinal damage at all with the DQ1, but I'm not positive), but you have the more severe NEUROLOGICAL issues that go along with it. 

<{POST_SNAPBACK}>

Yeah...DQ1 is linked to neurological problems rather than intestinal but the 2% of diagnosed celiacs that *don't* have DQ2 or DQ8 have DQ1 instead. Apparantly DQ1 can cause intestinal damage but its not nearly as common....only 2%.

[tiffjake]

I have a question about the Ent Lab test: is that a IGG, IGA, or IGE test? I was told that my Lame Advertisement Test was not good enough even though is confirmed a gluten intolerence. My friend said that I needed one of those three tests......thanks!!

[cornbread]

Tiffjake - Enterolab do IgA.

Raven - It was frightening to hear you say that. Often when I get glutened I will hallucinate flashing lights or that bugs are crawling on me, I can see them on my arms. One time I woke up and could 'see' a supersize (like, Japanese horror movie size) roach crawling down the bedroom wall towards my husband's head. I was screaming at him to look out! A few seconds later I realised I had hallucinated it, but I certainly wasn't asleep. The only reason I knew it wasn't real was the size of the bug. I can certainly imagine a link between gluten and schizophrenia.

[cornbread]

how long after going gluten free should i notice a difference? should i also avoid dairy foods?  p.s i was recently tested for food allergies and it was negative.

<{POST_SNAPBACK}>

Hi Flash,

How long before you notice a difference totally depends on the individual - I felt a lot better within days, but for others it's weeks or even months. With luck you will feel some improvement quite soon, even if not a total 'fix'.

Also, I just got allergy tested for 96 foods, and they came back negative for most including gluten and casein, two things that I know I have a positive IgA reaction to. The reason for this is that food allergy screening looks for IgG antibodies, rather than IgA. It's a little complicated, but both types of antibodies act differently. The main poiint is that IgG-mediated allergies are often reversible over time whereas IgA intolerances (the type of gluten intolerance we are dealing with here) is for life.

Re: dairy (casein) - the casein protein is VERY similar to the gluten protein, so there is a high chance that having a problem with gluten means a problem with casein too. I developed a casein intolerance about 4 months after going gluten-free. My symptoms were identical to gluten ones. If you feel you're not better going gluten-free, definitely try casein-free too. But before any of that, I can't recommend the Enterolab tests highly enough (they screen for casein too). It will give you the information you need.

Hope that helps!