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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

Anxiety And Bloating Still Happening After Going gluten-free? Help!
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Hello everyone! 

I was recently diagnosed with Celiac's about 2 weeks ago after FINALLY finding a doctor who's more into treating causes and healing my body instead of just stopping into the room for 5 minutes and giving me some random medication. I was diagnosed with Crohn's Disease at age 15 (am now 24) and my new doctor thinks it may even have been the wrong diagnosis and that this whole time, it could have been a severe gluten allergy causing all my issues. 

 

I just had a couple of questions, and I would love any help/encouragement/answers because it's been a very stressful and hard time and I'm at the end of my rope. 

 

1) I've been eating gluten free for about 3 weeks now and I'm noticing that my stomach is "harder" somehow. I guess you could call it bloating, but my stomach doesn't seem "puffier" per se - it just feels tougher and sticks out more (and it's noticeable because I'm pretty thin). I would have thought that my stomach would ben flattening since going gluten free. Does it just take a long time?

 

2) I've had a lot of shortness of breath and a hard time breathing. It feels like I can never get enough air and I'm always trying to purposefully yawn to get more air in my systems. I've also had a little pain in my upper right side, around my ribs, when I try to breathe in deeply. Has anyone experienced anything like that?

 

3) Anxiety: I started getting HORRIBLE anxiety attacks about 4 months ago. It's pretty much developed into constant panic and anxiety attacks and. Always feeling depressed, anxiety, moody, worried, and scared for no reason at all. I've always been an extremely happy, optimistic, outgoing person, so it's been really hard for me. I thought that going gluten free would help me immediately, but it's been an extremely slow process and the anxiety and fear is still pretty consistent. Is it normal that it could take me a longer time to start feeling less anxious? I don't want to take any medications for it and am trying to fix my gut instead - but I need to know that it's going to work eventually and be worth it, because I feel like I'm drowning in my own head sometimes. 

 

So, lots of questions, but everyone on these forums seems very helpful and encouraging, and I really just need some reassurance! Thank you!!!

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Welcome, nooblet! :D

 

A lot of people are misdiagnosed before actually getting a Celiac diagnosis, sadly.  Did your doctor tell you how bad your damage was on the endoscopy?  (May have said something like Marsh 1, Marsh 2, Marsh 3, Marsh 4, blunted villi, etc.)  Overall, the damage in your gut takes a long time to heal.  It can be months before you see changes, and longer if the initial damage was very bad, but it is totally worth it to stick it out. 

 

1) If you are still having stomach issues, try out avoiding dairy for a while, since a lot of Celiacs cannot handle dairy with all that damage going on in there.( http://www.cureceliacdisease.org/archives/faq/do-some-with-celiac-disease-also-have-lactose-intolerance)  Same thing with oats since they have a lot of fiber and stuff, many GI doctors will tell you to avoid them for three months.  ( http://www.celiaccentral.org/ask-the-dietitian/silent-celiac-disease-and-certified-gluten-free-oats/  )

 

2) Pain in the upper right abdomen like you describe are classic signs of gallbladder issues.  If after a few months of being gluten-free that doesn't seem to be better, have your GI doctor look into that. 

 

3) As you seem to know, emotional issues definitely are associated with Celiac.  That, along with the gut healing, will take a bit of time.  I am sure the stress of the diagnosis process and learning how to eat again don't help with the stress.  Just try to reduce your stress level as much as you can and stick it out a while longer.  

 

Overall, you are just barely into your healing.  Especially with you likely having had active Celiac for 10+ years, it is going to take a while for your body to recover from the damage.  Not ten years though, thankfully :)  Just be very strict with the gluten-free diet for now, avoid eating out, and try to eat healthy stuff so your body gets all the good stuff it needs to thrive.  Eventually you will hit a point where you do feel better, and feeling better will also help with your anxiety.  If you haven't already, check out this thread for newbies:  http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ and feel free to ask any other questions you may have! :)

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Glutennoob, and LaursTX,

Thank you both for these posts. Noob, if I may call you by that nickname, I have been gluten-free approximately the same time frame give or take a few days, but I know what you mean by the bloated feeling. The past few days this weekend I have suffered indigestion/heartburn like symptoms with some poofiness and a case of lil miss chip on her shoulder. I spent a lot of time thinking that I got cc'd, but going over things forward and backward . I know all the food and drinks I've had are gluten-free and since hubby wheat gluten-free to support me and not risk possible contamination ,no way could I been glutened. Your topic intro post made me feel less like I was going nuts. However no breathing issues here.

Laura thanks for your info it helped me step back and tell mysel, I,m still healing, which may mean random wacky things can be experienced. Plus with having worked some insane hours on a project I'm on that physical stress can be part of being the culprit.

Thank you both for helping me not feel like I went crazy.

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Laura thanks for your info it helped me step back and tell mysel, I,m still healing, which may mean random wacky things can be experienced. Plus with having worked some insane hours on a project I'm on that physical stress can be part of being the culprit.

Thank you both for helping me not feel like I went crazy.

 

:wub:

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Hi Noob.   Have you had your vitamin B12 and your iron levels checked? Might be worth looking at - mine were both low and I am sure that supplements really helped overcome the horrid anxiety I suffered around the time of diagnosis.  Have a look at this link for more people's experiences.

 

http://www.celiac.com/gluten-free/topic/105599-b-vitamin-weirdness-does-anybody-have-any-experience-with-this/

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If your new gluten free diet is a big change to your pre-gluten-free one your system could be adjusting to the new diet? (I say adjusting, hopefully not reacting ;) I mean if you're eating more processed stuff or more pulses or whatever). I think when I went gluten-free someone told me to give it at least six weeks to even start getting better and possible to expect/start noticing other things (temporarily). Cristiana is right about getting iron levels checked for breathlessness, anaemia can cause this. Could breathlessness be contributing to your anxiety at all? 

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Thank you so much everyone for your help and your kind answers! I did get my iron levels and everything checked when I was first diagnosed, so my doctor has me taking B12 and lots of other supplements to help heal my gut... including fish oil  :blink: but it does seem to be helping with my fatigue and dizziness (which was also giving me a lot of stress). I saw the doctor again yesterday and he has set me up on a very strict diet - pretty much vegetables, clean meats, a little fruit, no dairy, and nothing PROCESSED! Hopefully this will help me get on the right track. Thank  you all for your help!!! 

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Yes it definitely would take time! Even the breathlessness.. but it will be worth it! Stick to the fight when you're hardest hit. it's when things seem worst that you must not quit- goes the poem. Good luck and more gluten-free power! ;) 

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Hello everyone! 

I was recently diagnosed with Celiac's about 2 weeks ago after FINALLY finding a doctor who's more into treating causes and healing my body instead of just stopping into the room for 5 minutes and giving me some random medication. I was diagnosed with Crohn's Disease at age 15 (am now 24) and my new doctor thinks it may even have been the wrong diagnosis and that this whole time, it could have been a severe gluten allergy causing all my issues. 

 

I just had a couple of questions, and I would love any help/encouragement/answers because it's been a very stressful and hard time and I'm at the end of my rope. 

 

1) I've been eating gluten free for about 3 weeks now and I'm noticing that my stomach is "harder" somehow. I guess you could call it bloating, but my stomach doesn't seem "puffier" per se - it just feels tougher and sticks out more (and it's noticeable because I'm pretty thin). I would have thought that my stomach would ben flattening since going gluten free. Does it just take a long time?

 

2) I've had a lot of shortness of breath and a hard time breathing. It feels like I can never get enough air and I'm always trying to purposefully yawn to get more air in my systems. I've also had a little pain in my upper right side, around my ribs, when I try to breathe in deeply. Has anyone experienced anything like that?

 

3) Anxiety: I started getting HORRIBLE anxiety attacks about 4 months ago. It's pretty much developed into constant panic and anxiety attacks and. Always feeling depressed, anxiety, moody, worried, and scared for no reason at all. I've always been an extremely happy, optimistic, outgoing person, so it's been really hard for me. I thought that going gluten free would help me immediately, but it's been an extremely slow process and the anxiety and fear is still pretty consistent. Is it normal that it could take me a longer time to start feeling less anxious? I don't want to take any medications for it and am trying to fix my gut instead - but I need to know that it's going to work eventually and be worth it, because I feel like I'm drowning in my own head sometimes. 

 

So, lots of questions, but everyone on these forums seems very helpful and encouraging, and I really just need some reassurance! Thank you!!!

Hi

 

I have been diagnosed in February this year after being very sick for about 8 year but since last year April i started bleeding from my rectum. Doctors could not give me a proper explanation and i also have a pain in my right side more or less in the area of your gallbladder. They could not tell me what it was and after i went gluten free in Feb the pain subsided a bit but is back again. The gastroenteroligist seems to think it is my small intestine and related to my celiac. I also experience shortness of breath and fatique. I don't get anxiety attacks but i feel anxious and stressed. I hope you feel better soon and you can google The Gluten-free lie: why celiacs are slowly dying. It is very interesting and helpfull. I really benefited a lot from it. 

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Hi

 

I have been diagnosed in February this year after being very sick for about 8 year but since last year April i started bleeding from my rectum. Doctors could not give me a proper explanation and i also have a pain in my right side more or less in the area of your gallbladder. They could not tell me what it was and after i went gluten free in Feb the pain subsided a bit but is back again. The gastroenteroligist seems to think it is my small intestine and related to my celiac. I also experience shortness of breath and fatique. I don't get anxiety attacks but i feel anxious and stressed. I hope you feel better soon and you can google The Gluten-free lie: why celiacs are slowly dying. It is very interesting and helpfull. I really benefited a lot from it. 

Renee....that article is pure fear mongering.  Most Celiacs are NOT slowly dying but people are free to believe what they want.  You do know that Celiac's can certainly have unrelated health issues aside from their Celiac Disease or they could be suffering from additional food intolerances?  I went way more than 8 years of being ill and wasn't diagnosed until I was 46 years old. I was about as sick as a person can be at diagnosis.  But, over 9 years, I have healed fine and live a perfectly normal life.  I know many other Celiacs who have done the same and most of us are older too.

 

I am very sorry you are having a difficult time but it seems you should be screened for other AI diseases also. Maybe see another doctor because bleeding should not be that difficult to find the cause of. I'm sure the reason you are anxious and stressed is because of all this that you have going on.  But if you believe what this article says then it will be difficult to get better with that mindset.  Good luck to you!

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Thank you so much everyone for your help and your kind answers! I did get my iron levels and everything checked when I was first diagnosed, so my doctor has me taking B12 and lots of other supplements to help heal my gut... including fish oil  :blink: but it does seem to be helping with my fatigue and dizziness (which was also giving me a lot of stress). I saw the doctor again yesterday and he has set me up on a very strict diet - pretty much vegetables, clean meats, a little fruit, no dairy, and nothing PROCESSED! Hopefully this will help me get on the right track. Thank  you all for your help!!! 

 

When your doctor says nothing PROCESSED, is he including all those supplements he has you on?  Contamination can be a problem with supplements: http://www.biomedcentral.com/1741-7015/11/222

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Wow, I found both the question and the answers very helpful.  THANKS.  I'm struggling with diagnosis (10 days, but who's counting).  I'm sorry to say this - but I really felt like most of the "Gluten-free" people were just nut jobs, overly anxious about food poisoning, and just generally hypochondriacs.   Now, I feel like that about myself too..... Sorry to all of you, that I now realize have a VERY REAL problem, and some of you from what I read are in worse shape than I am, and best of all, many of you have triumphed over the disease and give me hope! Please keep those answers coming and don't be offended by questions from those of us that are newly diagnosed and still trying to figure out what are symptoms of the disease and what are just normal problems that come with life.

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Lots of great answers above! I especially echo the advice about dairy, being patient, and iron levels.

 

When I first went gluten-free, I actually got a little sicker for a brief period of time. I sneezed after eating almost anything. Previously, I had probably 100 painful lumps on my outer thighs, which eventually went away. All I can think is that my body had been storing all the excess toxicity that it had been too overwhelmed to deal with previously, and was now clearing it all out -- resulting in feeling worse rather than better.

 

Whatever the reason, though, I eventually did feel much better, and all the anxiety went away. I've been gluten free for about 7 months now, but I still have to be a little careful with dairy. It makes my anxiety return if I get too much.

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Look at it this way, if you have a deep cut and require stitches, it's 2 weeks before the stitches come out and another couple weeks before it is healed.  The damage you have in your intestines is probably worse than that and will take more than 3 weeks to heal.

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