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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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LindseyLC

Physiological Vs. Psychological

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Hello everyone, this is my first post, so please forgive my level of understanding of Celiac Disease. I have a wonderful boyfriend who has had celiac disease for two years. I have never before heard of or dealt with the disease and am trying my very best to be supportive. I am very frustrated, however, about certain symptoms he displays. He's very disciplined with his diet and avoids anything with flour in it, no eggs, milk (lactose intolerant), sugar, the list goes on and on. Basically he can only eat meat, potatoes, and some vegetables. He still has symptoms, sometimes for unexplainable reasons. The physical symptoms include bloating, constipation, gas, being hot, extremely thirsty, swollen tongue, urinating very often and several others. These I can somewhat understand. It's the psychological symptoms I find difficult to believe. He says certain foods make him quiet, angry or irritable. I have no problem with most foods, but many things give me gas or make me feel bloated. Eggs, grits, cucumbers, etc. give me the physical symptoms he describes, but do not affect my overall "mood" as bad foods do with him. I feel guilty when I question his food-related moods, but it just seems so strange and hard to believe. Do other people with celiac disease suffer from these random mood swings based on food? Thank you in advance.

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Have you ever felt angry/mean due to a hormonal fluctuation? It's much the same. Gluten makes me feel b%$@#y for a week. (Not as b%$@#y as a real hormone change, but similar...)

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I am a celiac and many foods affect my mood. I am still trying to sort them out.

One thing that helped was thyroid medication. Many celiacs are hypothyroid and cannot metablozie certain foods properly. Has he had his thyroid checked?

My husband gets impatient with me with my food/moods. But he says the thyroid meds have made a big difference.

Good luck and try to be patient.

Lisa

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If I poison myself, I go through several symptoms including attention/difficulty with concentration (quiet), short term memory problems and iritability up to and fly-off-the-handle rage.

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Eating gluten definitely brings back the depression that I dealt with for many years, and still deal with when I don't stick to my diet. I will become fidgeting, quiet, extremely moody, or disinterested in just about anything that is going on around me (tying back to depression) so yes, I do believe there are psychological changes that occur when gluten is ingested by someone with celiac disease. While that can be hard to deal with (I have a Mom and 4 of my 5 siblings with celiac disease so i know what it's like to deal with someone who is being moody because of eating gluten) someone in that situation, it's so helpful when those around you are understanding, or at least not judgemental about your sudden change in behavior. It'd be interesting to know what is causing your boyfriend to still have these symptoms. Perhaps he is having problems with cross contamination? I wish you and your boyfriend the best of luck :)

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Before I started the diet, five months ago, I was constantly sick and I felt really depressed (not technically/medically depressed, but felt down all the time). In addition, I was noticing an increasing irritability -- I'd snap at people for no reason. Since starting the diet I'm a lot less irritable and sad....even though I still have symptoms....so I think it's the gluten that got me mad and sad, even if I didn't know it at the time.

-celiac3270

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Thank you for responding so candidly to my concern. It's somehow better knowing my boyfriend's symptoms aren't unique. I will continue to be patient and we are researching this disease together, looking for new treatment options and possibilities. Good luck to you all!

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Lindsey

As the wife of a newly diagnosed celiac man I have to agree that the gluten causes a chemical reaction which takes a very long time to leave the body. This chemical reaction does affect the neurological system which in turn can affect the brain and thinking. He's not making this up.

If he's a good guy and you love each other, it'll work out.

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Hello everyone, this is my first post, so please forgive my level of understanding of Celiac Disease. I have a wonderful boyfriend who has had celiac disease for two years. I have never before heard of or dealt with the disease and am trying my very best to be supportive. I am very frustrated, however, about certain symptoms he displays. He's very disciplined with his diet and avoids anything with flour in it, no eggs, milk (lactose intolerant), sugar, the list goes on and on. Basically he can only eat meat, potatoes, and some vegetables. He still has symptoms, sometimes for unexplainable reasons. The physical symptoms include bloating, constipation, gas, being hot, extremely thirsty, swollen tongue, urinating very often and several others. These I can somewhat understand. It's the psychological symptoms I find difficult to believe. He says certain foods make him quiet, angry or irritable. I have no problem with most foods, but many things give me gas or make me feel bloated. Eggs, grits, cucumbers, etc. give me the physical symptoms he describes, but do not affect my overall "mood" as bad foods do with him. I feel guilty when I question his food-related moods, but it just seems so strange and hard to believe. Do other people with celiac disease suffer from these random mood swings based on food? Thank you in advance.

Hi,

The parallel you may want to make between your own feelings and those of a person with celiac disease is this;

Imagine if you had the most horrible PMS you have ever had.

Then add to that some of the symptoms of the flu.

Add some of the symtpoms of a severe allergy like congestion and tickling.

Then wrap it all up with a major hangover and what seems like 2 hours of sleep and then tell me if you would not be IRRITABLE, DEPRESSED, and completely APATHETIC?

I hope that helps you get a perspective on it and not take it personally,

Magdalena, ON, CANADA

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Lindsey,

I think it's great that you're so supportive of your boyfriend and seeking answers and educating yourself. I means a lot to him, I'm sure of that. And it says a lot of you.

Even those of us who have a problem, don't always at times understand what's going on... so it get's hard on our loved one's, I'm sure.

You're welcome to post anytime you'd like and we'll do the best we can to help you out.

Gretchen

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I get so annoying and in really bad moods when I get guten , I hit my sisters and just scream at them, he's not unique in this diesease, almost all of us get like this.

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I know I alread replied, but I got glutened from some toothpaste and am smack in the middle of a cranky episode because of it. I might as well hang a "don't mess with me" sign around my neck for my husband's benefit at this point.

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Lindsey, some of those symptoms sound like diabetes which sometimes accompanies celiac disease. Check this out:

http://www.diabetes.org/diabetes-symptoms.jsp

"Some diabetes symptoms include:

Frequent urination

Excessive thirst

Extreme hunger

Unusual weight loss

Increased fatigue

Irritability

Blurry vision

If you have one or more of these diabetes symptoms, see your doctor right away. You can also take our Online Diabetes Risk Test <http://www.diabetes.org/risk-test.jsp> to find out if you are at risk for diabetes. "

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Yankee, I was going to say the same thing. Sounds like diabetes, which is linked with celiac.

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I agree, sounds like diabetes, too. It is definitely worth having the blood sugar and insulin levels checked!

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Hi

I'm a clinical psychologist and I was diagnosed with celiac disease about four years ago. I now work with others who are having emotional problems secondary to celiac disease. I'd definitely back up all the advice of having your boyfriend go through a thorough work-up to rule out medical conditions, but it's not unusual for people with celiac disease to have emotional problems that aren't directly due to medical disorders. Those things are "real", too---whether you're depressed because of diabetes or depressed because you're not happy about having celiac disease, it's all depression.

I may be biased but I'm a big believer in the "mind-body" connection. If your boyfriend gets cleared by the physicians and is still having emotional problems, you might want to look into support groups, counseling, or psychotherapy. Sometimes the psychotropic meds (antidepressants and such) can also help. These things may not be for everybody, but they made a huge difference for me and some others I know.

It's really cool to hear about non-celiac disease partners who are so concerned and supportive of their partners with celiac disease. I'm sure that goes a long way for your boyfriend, and I hope for the best for both of you.

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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