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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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happylittlemama

What Changes Happen After Diagnosis?

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I know we talk a lot about the symptoms of Celiac on here, but I was curious if anyone was willing to share what things have changed for the good? We are in our 5th week of gluten free and on the parents and babies forum I listed what I had seen changed with my kids, but I didn't do myself. I would like to compare notes if you wouldn't mind.

My hair was dry and getting curlier with each baby I had. Now it's getting straighter and the texture is feeling better...healthier? I think it is starting to grow faster too.

Some of the acne is clearing up. I still get a few zits here and there but they are clearing up within a week or so. It used to take months.

I am still getting occasional headaches. Some of them I can attribute to the summer heat and not drinking enough water, or sometimes being overtired. I'm not getting as many as I used to, which is a huge improvement.

My joints aren't hurting as much as they were, but I still have pain in them and swelling still. I have 3 herniated discs in my neck in 7 different places. That's not getting better, unfortunately. A little OT, but if it's not getting better with physical therapy, should that be considered for surgery? I've been doing 7 weeks of physical therapy now.

More energy! YAY! You would not believe what my house looked like after 4 months of barely maintaining it with 6 kids wrecking havoc in here.

Anyone care to share their improvements?

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I know we talk a lot about the symptoms of Celiac on here, but I was curious if anyone was willing to share what things have changed for the good? We are in our 5th week of gluten free and on the parents and babies forum I listed what I had seen changed with my kids, but I didn't do myself. I would like to compare notes if you wouldn't mind.

My hair was dry and getting curlier with each baby I had. Now it's getting straighter and the texture is feeling better...healthier? I think it is starting to grow faster too.

Some of the acne is clearing up. I still get a few zits here and there but they are clearing up within a week or so. It used to take months.

I am still getting occasional headaches. Some of them I can attribute to the summer heat and not drinking enough water, or sometimes being overtired. I'm not getting as many as I used to, which is a huge improvement.

My joints aren't hurting as much as they were, but I still have pain in them and swelling still. I have 3 herniated discs in my neck in 7 different places. That's not getting better, unfortunately. A little OT, but if it's not getting better with physical therapy, should that be considered for surgery? I've been doing 7 weeks of physical therapy now.

More energy! YAY! You would not believe what my house looked like after 4 months of barely maintaining it with 6 kids wrecking havoc in here.

Anyone care to share their improvements?

let's see, for me personally the biggest thing i noticed was that i could actually get out of bed in the morning!!

i was SO fatigued that sleeping 8 hours at night wasn't enough- i would wake up in the mornings feeling like i had not slept at all. because of the tiredness i had coffee every morning (just the one in the morning). now, i drink decaf because i don't need the caffeine and it doesn't go through me like regular coffee (i just like the taste and it's part of my morning ritual).

it also got to the point that i could FEEL the inflammation in my intestines. that area always hurt- that's how i described it to people- it literally felt like my intestines hurt! my waist went down 1/2 inch as well from that inflammation as did the inflammation on the rest of my body. for years my upper thighs on the sides were extremely sensitive- this has improved as well. i now have normal BMs. never had the D thank goodness but they definitely were not normal before.

i'm not irritable/depressed/anxious.

less headaches!

my skin complexion has improved. i look at photos around the time that i felt the worst and the dark circles under my eyes were horrendous. granted, they're still there, but my overall skin complexion looks better! several people have told me i look healthier now.

my skin isn't AS dry now and i have less of those weird random dry patches.

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The changes for the better, oh gosh, what can I say! My signature says a lot but the changes go so far beyond what is there. It was like a miracle. I became a different person. Part of that, of course, was not living in constant pain but I am just so much more relaxed in so many ways. It is like I am me again. When I first got hit with celiac in childhood my grandfather, who I didn't see often, said to my parents 'Where did my little sunshine go?' 40 some on years later she came back.

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i've haven't made a signature yet but i had just about every symptom ... gi, bloating, ataxia, bone and joint pain, insomnia, brain fog, numbness and tingling in arms, feet and legs, vit d deficient, unbelievably dry eyes, dh, hair loss, hypothyroid and just overall blah. i have seen improvement so far and most especially with my gi and dh. i have seen some improvement in the tingling/numbness, brain fog (can concentrate more easily & clearly)and definitely more energy. i'm starting to notice (just yesterday in fact!) that my leg feels stronger and don't give way like they used to and stronger grip. i've also noticed i'm not as anxious. i'm having more nights with longer sleep. for the past almost 14 years i've felt like a walking zombie with 4 or less hours a night. now i've had several days with atleast 6 or more restful hours and wow! that is huge!! i'm hoping my hair grows back in thicker. i miss my big hair. i still have bone and joint pain but i will say i'm starting to see improvement.

for me, with the exception of a few cc's i've been gluten free since january 10, 2010. and then i did a gluten challenge for about a month in may and gluten free again may 24, 2010. it messed up my progress but i'm back on track and feeling the difference!!! :):):) i am so grateful.

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I know we talk a lot about the symptoms of Celiac on here, but I was curious if anyone was willing to share what things have changed for the good? We are in our 5th week of gluten free and on the parents and babies forum I listed what I had seen changed with my kids, but I didn't do myself. I would like to compare notes if you wouldn't mind.

My hair was dry and getting curlier with each baby I had. Now it's getting straighter and the texture is feeling better...healthier? I think it is starting to grow faster too.

Some of the acne is clearing up. I still get a few zits here and there but they are clearing up within a week or so. It used to take months.

I am still getting occasional headaches. Some of them I can attribute to the summer heat and not drinking enough water, or sometimes being overtired. I'm not getting as many as I used to, which is a huge improvement.

My joints aren't hurting as much as they were, but I still have pain in them and swelling still. I have 3 herniated discs in my neck in 7 different places. That's not getting better, unfortunately. A little OT, but if it's not getting better with physical therapy, should that be considered for surgery? I've been doing 7 weeks of physical therapy now.

More energy! YAY! You would not believe what my house looked like after 4 months of barely maintaining it with 6 kids wrecking havoc in here.

Anyone care to share their improvements?

Once the severe iron deficiency anemia went away the energy was back up. No more mouth ulcers once a month, no more GI symptoms, bad indigestion, diarrhea, constipation. Hair quality improved and so did skin. A lot of the vague stuff like paper thin nails are all related to the malabsorbtion of nutrients, vitamins and minerals. Have not been anemic since I've been gluten free.

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Let's see. I recovered from ... "Gastritis", "IBS", canker sores, borderline anemia, bipolar illness, and fatigue. My hair and nails are stronger too. Oh - I also used to get a rash on my hand that might be DH.

I might have missed something but my story is in my profile. :)

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-More energy!

-No more hair loss, and just last week my hubby commented that my hair was growing in darker (it's blonde, but had turned almost white). I have never colored my hair and I am 30 years old, but I was losing my hair and going grey/white.

-healthy nails that don't peel or break.

-skin is somewhat dry still, but fewer breakouts and no more rashes or hives.

-Less swelling in my hands and feet. I can where my wedding ring again and I have lovely ankles.

-no more fake pregnant belly bloat.

-more regular and lighter periods.

-ability to think clearly (most of the time :P )

-ability to read books again (and enjoy them) my short term memory had gotten so bad I would re-read a paragraph more than once trying to remember which line I had just read. Sounds weird, but I had this problem.

-ability to remember numbers has improved. Another strange one, but I noticed it today. I have never been able to recall numbers very well. I would always have to write down an address and look at it more than once on the way there, I wouldn't be able to memorize it. Today I had a list of addresses for several places I needed to go. I wrote them all down on a piece of paper and somehow I remembered them with only one glance. I didn't have to look at the numbers more than once while in the car. Perhaps this is just over-all memory improvement, but it seems like a miracle. My brain is working so well for the first time in years!

-No more asthma attacks

-No more anxiety attacks

-less depression/more happiness (today I could not stop singing, I was happy for no reason at all)

-strength in my hands and arms (I used to be too weak to even open a bottle of water. Now I can carry in all my heavy groceries and open my own jars and bottles)

-no more sinus infections

-fewer seasonal allergies

-weight loss of 20 lbs

-no more dry eyes (I can wear contacts again)

-healthier teeth and gums (still have gum disease, but my gums don't bleed as much as they used to)

-No more muscle pain/muscle cramps

-no more joint pain

-no more shaky hands (still happens if I get glutened though)

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    • 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. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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