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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? - 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

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Hi there, this is my first post, it will likely be long, and I do not know if it is even on the right board. please forgive me for all of these things. I'm really just looking for support and to hear I am not alone.

 

Let me start with a little back story.

 

My entire life I have had issues with constipation, and in hindsight other things that may have been gluten / diet related. I had crazy growing pains in my legs, my skin swells up when scratched, to the point you can write on me (my siblings thought this hilarious), achy joints whenever it rained, and I often had days when I would go from being ok, then  suddenly, as if someone had flicked a switch, I would get really down. I could stay like this for a while before finally snapping out of it. 

 

5 years ago, after the birth of my DD, I was diagnosed with IBS - despite no tests of anything - just described stomach pains and was told I had IBS. Started having regular panic attacks shortly after DDs birth too. I also developed lactose intolerance, but only after large amounts of milk - at least 16oz. Anything less and I was fine.

 

4 years ago, whilst pregnant with DS I developed really severe anxiety, which never went away. I am not originally from the US, moved here 9 years ago, and suddenly I was terrified of living here. I also developed health anxiety, although this was based on true symptoms, not imagined. I had a lot of anal bleeding 3 years ago, was sent for colonoscopy, was found to have hemorrhoids left over from DS birth. I also had many MS symptoms. An MRI showed no lesions, but I did have an abnormal growth in my white matter. Had a follow up six months later and this was deemed to be benign. Went to therapy for anxiety and depression last summer after a trip to D.C. left me with such high anxiety I actually couldn't leave my hotel room for 2 weeks without a panic attack. Started CBT but couldn't continue due to life circumstances. I didn't find it was helping much anyway. 

 

Then last October I started getting stabbing pains in the area of my left ovary. It was so severe I ended up in ER on vacation. They did an ultrasound of my ovaries and found nothing. They gave me IBS meds (Bentyl) and sent me home. After my vacation I stopped taking the meds and did a 2 week elimination diet. Felt better and reintroduced in a rather haphazard manner but felt fine from Thanksgiving to Christmas eve. Christmas day I woke up with the same pains as previously and extremely constipated. This went on for 2 weeks and I went to my PCP. She ran blood tests, celiac test, and food allergy tests. The only allergy was to shrimp - I already knew I had a shell fish allergy so it didn't reveal anything. No celiacs or wheat allergy. CT scan also showed burst cyst on right ovary. 

 

I decided to try the whole30. I had nothing to lose after all. I cut out everything listed as well as nuts and nightshades, thinking that these might cause my pain. After 30 days I was feeling better, but 4 days later I felt much much better, so I started introduction. I started with sugar since I doubted this would be an issue - turns out sugar gives me a headache. Not a huge issue really. Then I had dark chocolate - holy heck, did I feel bad. I was so crazy irritable. Tried it again a few days later - was definitely the chocolate and not some strange coincidence. Next came dairy in the form of an 8 oz latte - bingo! Milk had been causing my stomach pain all along. Turns out it probably wasn't the lactose because a few days later I discovered cheddar (lactose free cheddar) also caused the same pain. So I guess dairy is out, which is heart breaking. Alcohol, it turns out, causes my joints to ache a crazy amount. Finally came the one I was dreading most - gluten. I ate a dairy free pizza for lunch and had a tortilla in the evening. Seriously, that was a lot of wheat, and apart from some really minor gas, I felt fine. I was overjoyed - I love bread so thought this was excellent. However, when I went to bed that night, I felt intoxicated and like I do after eating shellfish, like I needed to vomit etc. The next day I woke up feeling absolutely awful, mentally. I felt as though my life was a waste of time, and the only thing stopping me from ending it was to think about how sad my kids would be if I were not here. I told my husband I thought our marriage was over, and pretty much spent the entire day in bed crying. I have not felt this low in a long time. Two days later I still feel as bad. That's why I am on here. Has anyone here had such severe depression after eating gluten, with a negative celiac test? Do you think it really is gluten, or am I clutching at straws here. I didn't actually notice any improvement in my anxiety and depression whilst on the elimination diet, but I sure as heck noticed a change the day after eating a pizza. Also, if it is gluten related, how long before I feel better?

 

Sorry that this is so long, and probably mostly irrelevant, but in my current state it is hard for me to sift through and know what is important and what is not.

 

Thank you if you read all this.

 

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gluten makes me mean!  <it's one of my "o my gosh, what did i eat?"  signs and means that i have ingested gluten.  but, depression is also caused by a myriad of other things - PLEASE get some help and do not hurt yourself.  you are right - your kids need you, and i'm sure your husband does, too.  sometimes things look dark and then problems appear to be huge but just take a deep breath and wait it out.  if you are taking any meds, you might look at them for any dangerous side effects.  i don't know too much about thyroid but i know that will affect your moods and emotions, too.  :(  i'm so sorry you're feeling this way :(

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Thank you for your response. I had my thyroid checked and it is fine. I don't take any meds. My psychologist wanted me to but I said I'd rather not since I'm alone with the kids a lot and didn't want anything that might impair my judgement etc. Since she doesn't consider me to be a risk to my kids our myself she was fine with it. I'm really not going to hurt myself. I'd rather live in thus state forever than risk not seeing my kids grow up, it's just a difficult time right now and I'm confident gluten must be playing a rule. I'm hoping to clear it out and try another reintroduction to make sure, but I think I know the answer. It's particularly worrisome given I'm off to DC again in a few days for a couple weeks and avoiding gluten whilst eating out will be hard, and combined with the fact that being in DC sends to trigger anxiety in me somehow, I'm just nervous.

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Like, "Not Me!", my husband and I get cranky when we accidentally get glutened.  Prior to my diagnosis, I was having bouts of anxiety that now, looking back, were probably related to both Celiac, anemia, thyroid swings and menopause.  I was a mess.  This all went away when I resolved each issue, but it took a year or so.  

 

It wouldn't hurt to go gluten free, but you really have to do it.  It's not just eliminating gluten from your diet, it's about cross contamination too.  So, research the newbie thread under the "coping" section as it contains valuable tips.  You'll probably have to adhere to the diet for a few months, not just a few weeks allowing the body to heal.  

 

Think about getting some additional help by reaching out to family and friends for help on getting simple chores/things done.  Think about getting advice from a Psychiatrist (medical doctor) as you sometimes may need meds since it can be a chemical imbalance.  It might really help.

 

I found that I stopped or at least minimized my life by giving up several volunteer positions and kept doing only those things that I truly loved or had to do (we are self-employed).  

 

Please take care of yourself!  

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Yes, yes, yes.  I also struggled with severe depression for years, probably from age 14 to age 24, when I went gluten free. Sadness, apathy, outbursts of anger, and turbulent emotions are all symptoms of gluten ingestion for me. I'm generally a content, easy going person, but as soon as I hear thoughts in my brain of "it's just not worth it. Why do you even bother? There's no point in being alive," etc, I KNOW I have been glutened. These thoughts are really terrible and make me feel incredibly low. There's no way I would ever act on them, but they are vicious thoughts and they ARE there. It helps me to know that they are a result of the gluten and that they will pass after a couple of days. 

 

I also second what CyclingLady said. If you are going to try gluten free to help, you have to dive in one hundred percent. No cheating, and be extra vigilant about cross contamination.

 

I hope you feel better soon! Anxiety is truly an awful mental space to be in. 

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Anxiety, depression, panic attacks --these are all hallmarks of gluten intolerance. I was uncharacteristically anxious and "wired for sound" edgy, bursting into frustrated tears and grouchy and sad...when I was very ill before diagnosis. I call it" gluten head"

 

These are all related to gluten, possibly vitamin and mineral deficiencies and hormones, but if you have no real psych issues, then

I promise you, they can resolve off gluten. But you will have to do it 100%.

 

All of that is gone now, but if I get glutened accidentally, I feel 'racy" and cannot sleep and I feel as if things are "not quite right".

(and my temper gets a little short--which is nothing like my usual temperament at all)

 

These emotional issues are reported by many of us on here, so it is no coincidence that you are also having GI symptoms in conjunction with them. 

 

Take a good quality probiotic, a multivitamin, go gluten-free and DF for a few weeks and see how you feel. Be patient and tell yourself every day "This will get better. Every day is a healing day." And, believe it!  

 

I cannot tell you how many people PM me with this same concern and how many come back to tell after a few weeks how much better they feel. Just hang in there, ok?

 

Do not despair and know that we "get it". You have come to the right place for some support.

 

There are many Pub med articles on gluten and anxiety/depression, but here is one to start you off. The connection is real and you are on the right path toward resolving these symptoms.

 

http://www.psychologytoday.com/blog/the-breakthrough-depression-solution/201105/is-gluten-making-you-depressed

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Really good advice about vitamins and minerals above.  From my own personal experience I am convinced that having low levels of B12 and iron were really contributors to my own feelings of anxiety.  The anxiety started to improve when I started to take supplements, long before I was found to be Celiac and finally gave up gluten.   Have you ever had those levels checked?  It is worth reading about B12 and iron levels on this website.  I live in the UK and I was considered to have normal (but low) levels of B12 but persisted in taking sublingual B12 because I felt that by international standards our levels here are far too low.  I really could not have believed a couple of pills a day could make such a difference, but they have.   Just make sure your levels are checked first though should you decide to take iron, as I think it can be dangerous to have too much iron, too.

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I have suffered from depression and anxiety my whole life, and it wasnt until I experimentally stopped eating gluten that I realized it was directly related to consuming wheat. Now that I've eliminated gluten from my diet, I only have depression/anxiety when I consume gluten accidentally. If you have already tried to be gluten free, dairy free, and maybe fermented foods free and are still suffering from depression, I'd try filling in any nutritional holes. Depression is associated with a ton a different nutrient deficiencies. Heres an article that outlines some of the key nutrients that you may be deficient in. The product they sell is also very effective. I'd recommend trying it out. http://entheozen.com/go/vitamins-for-depression/
 

Here's also a guide to eating serotonin boosting foods.

http://entheozen.com/go/serotonin-foods/

 

the other secret: Lots of Turmeric!! Depression is usually a result of inflammation in the brain, especially due to glutamate excito toxicity (So avoid proteins like gluten, casein-in dairy, soy, fermented foods and MSG. They all have an excess of free glutamates that promote this excitotoxicity that can cause depression)

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 I was very shocked at how depressed I felt after being gluttoned accidentally, I could hardly believe it, as I have never suffered with depression like that before, it seemed to last a few days and then I felt better, although not entirely ...so yes I believe its actually one of the worst symptoms some people get if they have been been gluttoned.. 

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I do not suffer from depression but when glutened, I have anxiety problems and I have NEVER had that problem in my life.  Apparently, my symptoms when glutened have changed a bit with age and Mr. Anxiety makes an appearance for at least 3-4 days.  It is horrible so you are not alone.  These 2 are common complaints.

 

Considering that seratonin is also produced in the gut, depression and anxiety would be a problem when you compromise your GI tract.

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