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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Ummmm...is This Normal For Starting Out Gluten Free?
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shellybean    1

Hey all, I've been on a gluten free diet since I was diagnosed a couple of weeks ago. Just wanted to know if this was normal.

Um....for starters I feel like I've just left a drug rehab facility. This is gluten here folks! Why am I so moody and out of my mind? I am having these extreme highs, and extreme lows in mood, and am crying all of the time. Sometimes because I am happy, sometimes, because I am sad (over nothing of course). Then a few days ago I was driving to work and felt like I was stoned out of my mind (in a good way of course, along with my body getting all tingly like it does if I were to hypothetically partake in such an activity). I just wanted to grab everyone's face and be like "life is great!" and kiss them on the forehead. Then after a few days of that, I just wanted to cry because I was really depressed.

Also the bloating seems to be coming back, and I am not ingesting any gluten (I have been REALLY careful about this). I am a little worried that I got gluten bombed at Christmas dinner, but I checked all of the labels for gluten, and my family knows what is going on (I've also convinced them to get screened because they have all of the same symptoms that I have).

Some days, my anxiety completely goes away, other days it's out ocontrol.

What is going on? Is this gluten withdrawal? Or have I been gluten bombed? I am also on a gluten-free colon cleanse right now (it's uber gentle and uber awesome for anyone with IBS or constipation- It gets rid of all of the undigested plaque in your system- been using it for years http://www.drnatura.com ), so I am supplementing with gluten-free probiotics, and multivitamins, and making sure I am drinking PLENTY of water.

I just need to know that this is normal, and going to a doctor is out of the question since I am uninsured and am flat broke. When does this get better? It's so early in this game, I can't quite tell what my body is reacting to! I just want to get back into my pants again!

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IrishHeart    1,634

Sorry, but I have no idea what "undigested plaque" is and I honestly do not think colon cleansing for a celiac is a good idea at all.

Your intestinal walls are trying to heal.

You may just want to let things "be" for now.

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ajnemajrje    0

You could try the SCD (Specific Carbohydrate Diet) just in case you are reacting to somethingother than gluten.

Many people with Celiac - having eaten gluten containing foods for years without realising - can have damage to the intestines that can take a while to heal. There is an actual condition known as Leaky Gut Syndrome where the toxins that should be filtered out in the digestion process are instead pumped into the blood stream.

The SCD diet is a very strict diet that cuts back on everything - especially grains and all allergens - at first and then after a while re-introduces more food into your diet to see what yor triggers are - mine are oats, kiwis and apples besides gluten. Just google it and you will find many sites about it.

You might want to try that :)

I also agree that a colon cleansing at this point might be too invasive of a procedure while your intestinal walls are still healing. You might do more damage than helping.

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It could just be withdrawal, but I agree the colon cleanse isn't probably the best thing right now. Maybe in a 6-8 weeks when you've adjusted a little, but it's probably too much for your system to take right now.

Something that I've picked up is just because something doesn't list gluten on the label doesn't mean it hasn't been produced on equipment that also produces gluteny foods. For example, last night I was hunting for snacks in the kitchen and found a bag of chips and it didn't have any gluten ingredients, but said, "Produced on the same line as products containing wheat and peanuts" on the label. I'm not a huge stickler about cross contamination, but I put it back.

Maybe it is something else you are reacting to? Another thing I've found is that I have a reaction to corn products as I do gluten, which really sucks because I absolutely love all things corn.

Also, it could just be toxins and built up junk leaving your system and it will subside in a few days.

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Hi there

I spent the first gluten-free 2 weeks feeling great, then I experienced the same as you for about 6 weeks. I didn't know whether I was coming or going, happy for a few days, murderous or suicidal the next few days etc. at first I thought it was gluten detox but now I'm more inclined to think it was my hormones rebalancing as I also suddenly (for one month only) experienced major breast pain. And my skin changed too. I just think my hormones went crazy in the absense of gluten and didn't know what to do! It was a horrible experience and actually began thinking I had bipolar depression. I'm much much better. Its all virtually gone.

I've been gluten-free for 3 months.

Hang in there! Give it a couple of months! :)

Ps. IMHO I agree with everyone else on the colon cleanse. Give your body a break. Be natural, let your body rest, let your intestines heal. At least for a good while?

Best wishes

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ktienken    1

totally going through the same thing! I was diagnosed in early November and my bloating has just settled down. two thing that I would say (in case you don't already know): avoid soy at all costs . it is one of the biggest contaminates . I read a few studies where they tested products that were supposedly gluten free. they found that the products contained almost 3000 parts per million!!! 20 ppm is typically considered gluten free. If the product has been certified gluten free, and contains soy, then it is safe . I thought I was Gluten-Free for awhile, and then found out about the soy.

The second thing I would.'re commend is a cleanse/detox program. I really enjoyed the Clean Program (thecleanprogram.com). this will.be a good way to reintroduce things in your diet and find out what else your' 're sensitive to.

I've developed Eczema since I've stopped the gluten etc. :(. I don't know what to do, or if it will go away

:(

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kareng    1,992

totally going through the same thing! I was diagnosed in early November and my bloating has just settled down. two thing that I would say (in case you don't already know): avoid soy at all costs . it is one of the biggest contaminates . I read a few studies where they tested products that were supposedly gluten free. they found that the products contained almost 3000 parts per million!!! 20 ppm is typically considered gluten free. If the product has been certified gluten free, and contains soy, then it is safe . I thought I was Gluten-Free for awhile, and then found out about the soy.

The second thing I would.'re commend is a cleanse/detox program. I really enjoyed the Clean Program (thecleanprogram.com). this will.be a good way to reintroduce things in your diet and find out what else your' 're sensitive to.

I've developed Eczema since I've stopped the gluten etc. :(. I don't know what to do, or if it will go away

:(

If you are trying to say that the presence of soy makes a product NOT gluten free, that is not correct. Some people have a problem with soy but soy does not contain gluten. some people have a problem with other foods, that does not mean the food contains gluten.

Please provide reputable sources for these " studies" you are citing.

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IrishHeart    1,634

avoid soy at all costs . it is one of the biggest contaminates . I read a few studies where they tested products that were supposedly gluten free. they found that the products contained almost 3000 parts per million!!!

:(

Holy smokes----- that's a huge number!!.

Please tell us where you read this? Thanks.

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nvsmom    332

I don't know about being glutened, or the stats you mentioned, but I wanted to mention that I too felt really off those first few weeks. I've rarely been so grumpy and tired... My poor family! LOL It didn't last. By three weeks it was done so hang in there!

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Chaff    9

I didn't know whether I was coming or going, happy for a few days, murderous or suicidal the next few days etc. at first I thought it was gluten detox but now I'm more inclined to think it was my hormones rebalancing as I also suddenly (for one month only) experienced major breast pain. And my skin changed too. I just think my hormones went crazy in the absense of gluten and didn't know what to do!

OH! I'm week 5 and I've been getting weird, off-cycle breast pain. Hello -- this sounds like hormones going wonky before settling into a new normal. Actually, now that you mention it, it is similar (in crazyness, not specific changes) to when I went off the pill. Everything was insane for weeks.

Considering the connections between celiac and other body functions other than the digestive system -- especially thyroid function -- hormones being affected sounds like a real possibility.

...All of which is to say, going off gluten is probably a much more complicated business than we know. Nutritional deficiencies to resolve, food intolerances (and cc) to discover, and guts to heal are likely only the half of it. To me, this means:

1) we can only control some of this

2) the best thing is patience, endurance, and distraction until things settle down

3) there has to be a bar where we go to doctors for answers with the suspicion that something else is happening

Without this forum, though, I would have no idea of figuring out where that bar is. I'm so glad this place exists.

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IrishHeart    1,634

I hate to say this (because no one really wants to hear it and I understand) but it takes a long time for things to resolve.

This is an up -and -down healing path...and it requires MAJOR patience and time.

Newly diagnosed people always ask " How long will it take before I feel better?" --and I asked this same question over and over again too--.

and the answer is :It takes as long as it takes.

Sorry, guys. :(

No set timetable. No set protocol. Everyone heals at different rates.

Some take 6 months, some take 2 years or longer.

Every year is a healing year. (this is my doc's quote and now, my mantra)

All you can do is be patient, drink water to hydrate, take out dairy at first (you may well be temporarily lactose intolerant as well) , rest if you need to, eat cleanly and plainly, exercise in moderation if you can tolerate it and...this bears repeating: be patient.

Make sure you get proper follow up care from your GI doc.

Before you start taking a whole bunch of supplements, cleansing and purging and switching your diet all around and worrying too much, let yourselves heal a bit.

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i found things improved more when I took cows milk out as well. For that reason I avoid most processed foods as they either contain gluten or milk products.

However I am on a paleo influenced diet rather than just gluten free so, except for brown rice, i don't eat any grains at all. I also avoid supplements as paleo is quite nutrient dense.

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Chaff    9
All you can do is be patient, drink water to hydrate, take out dairy at first (you may well be temporarily lactose intolerant as well) , rest if you need to, eat cleanly and plainly, exercise in moderation if you can tolerate it and...this bears repeating: be patient.

Make sure you get proper follow up care from your GI doc.

Before you start taking a whole bunch of supplements, cleansing and purging and switching your diet all around and worrying too much, let yourselves heal a bit.

IrishHeart, this is what I was hoping I could do, but it doesn't seem to be working. I have a huge bloated belly and C every day, gluten-free-foods (store-bought breads, etc.) are the only safe foods for me apart from avocadoes, tuna, and rice. I've tried eating all the other things people recommend, and they just make me sicker (severe stomach aches, heavy brain fog, nausea, all that stuff).

Supplements help, store-bought gluten-free foods help. Nothing else seems to help. The GI doctor said maybe if I went to the Mayo Clinic I could get proper treatment, but that the military system here in Okinawa can do nothing further for me. So I'm planning a trip my next time in the States, in March, but until then, I need supplements and a crazy diet.

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IrishHeart    1,634

IrishHeart, this is what I was hoping I could do, but it doesn't seem to be working. I have a huge bloated belly and C every day, gluten-free-foods (store-bought breads, etc.) are the only safe foods for me apart from avocadoes, tuna, and rice. I've tried eating all the other things people recommend, and they just make me sicker (severe stomach aches, heavy brain fog, nausea, all that stuff).

Supplements help, store-bought gluten-free foods help. Nothing else seems to help. The GI doctor said maybe if I went to the Mayo Clinic I could get proper treatment, but that the military system here in Okinawa can do nothing further for me. So I'm planning a trip my next time in the States, in March, but until then, I need supplements and a crazy diet.

I do not know your health history or your other health conditions, hon so I cannot even begin to try to give you any thoughts.

I do not know how long you have been gluten-free either.

"store bought gluten-free foods" --are not really "plain foods". They are a mix of carbs and starches. They cause bloat in me for sure.

I am not saying they are not safe (gluten - wise) . I am saying they could be an issue.

When I say "plain", I mean:

veggies, fruits, meats, fish, fowl, game meats, nuts, seeds, eggs.

Hypothyroidism causes major C. (I know, I once suffered from it) Notice I said "once".

I can talk with you via PM if you want ,but you may have a number of things going on.

My best friend has iron overload and she gets "tapped" every once and a while through phlebotomy. Is that what they do for you, too?because that excess iron may well cause C as well.

The thing is, you should eat what makes you feel okay right now. In time, this may all reverse and you can incorporate many hew foods. It takes time.

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