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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lifting The Veil: First Months
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2 posts in this topic

I hope this will be useful to some recently dx. I've been dx on January 7th (biopsy results) but I stopped eating gluten on December 2nd right before my gastro. celiac disease symptoms can be elusive, and it is easy to forget how sick you felt. So this is a list of the things that are goin better after almost two months gluten-free.

During this time, I have had several problems, most of all right after New Year's eve and then again last week: gastro and bowels symptoms but also other problems: extreme fatigue, brain fog, depression, vision problems, and of course intestinal problems. I have not pinpointed why: I'm also lactose intolerant and perhaps an excess of lactose and too many sugary stuff sent my bowels in alarm mode again, but I don't think I had any gluten (not the second time; the first, yes). Anyway, it's useful because it reminds you: "THAT'S what I've been feeling like for months". And then you don't feel anymore like you're pretending and pampering yourself.

My best advice, which I'm picking up from other and more expert people, is to keep to a simple diet as much as possible and to limit processed foods in the first months. Rice, maize, quinoa, meat - cheese if you can - fish, vegetables, raw fruits. Simple stuff. I'm experimenting with what I can get away with (wine? bits of chocolate? homemade muffins? yeast? etc). However, when I am feeling ok, the improvement is very noticeable. Some improvements may come from the fact that I much more rested because I haven't been working these last weeks: I took unpaid leave. But I took it before the dx, because I could not STAND to work any longer. Here it is:

BRAIN FOG: this is to me the most important and the clearest indicator. I am much more alert, I wake up in the morning feeling human (ie: rested, more or less) and capable of thinking clearly. I can study, read, absorb things much more easily. Most of all, I recovered the ability to PLAN and the zest for things: I find I have one million projects of stuff I want to do, and I can see a path to do them. In the last months, planning and organizing things was very tiring and I did it hesitantly; I often did things that I KNEW I liked, but with no great joy and wondering why to put all these huge efforts (so they felt) in enterprises which I did not really enjoy after all, because it was so confusing and tiring (lessons, writing, reading, travelling...)

FATIGUE/ENERGY: I mean physical fatigue. I find myself doing every day a quantity of stuff (in and out, shopping, cooking, doing chores, studying, meeting people), much more than I could do before, and most of all, I reach dinner time and I am still not tired (whereas before I fighted with sleepiness and tiredness and a general feeling of I-can't-make-it all day long).

VISION. I am myopic, something totally apart from celiac disease. However I had been having difficulties in focussing and generally more blurry vision in the last few years, and my eye doctor insisted my vision was the same as before (she said after 40, your brain finds it more difficult to focus). Now - and it is not just wishful thinking - but apart from the episodes I quoted, my vision is clearer. more defined, etc (I can measure it for instance from the ability to read the lettering on posters around the house from the same positions)

JOINTS AND STIFFNESS - I had in November a whole month of headache, every single day. I then understood my jaw muscles were giving me terrible tension headaches. My dentist had given me a bite to wear at night like five years ago but I actually started wearing it only in the last months, and I could not understand why my jaws were suddenly locking up. Again: problem much better (although it's still sore in the morning but nothing like before)

BOWELS: of course. Apart from the episodes, immensely better (I have to be careful of lactose however or gas and gas pains crop up again; If I don't get lactose, I'm ok)

SKIN - I did not have DH. However (or am I dreaming?) my skin feels softer and more compact.

DEPRESSION, ANXIETY have lifted. I am, however, very emotional, often thinking of people I've lost, crying a lot: but it feels ok. I mean, I cry and then I get it over with and do something else. It feels almost as if I'm MORE emotional than before, more open as well. Which brings me to

LIBIDO - has anybody's else libido been perking up after going gluten-free? MIne definitly has. Since I have more energy, it's obvious but I guess also my brain receptors are working better in those areas as well.

I find I do not want to underline too much these things to people. First of all, how can I make them believe me? Secondly, I'm afraid it will all disappear and instead of improving more and more I will start going back. Better not to defy the gods. But here people will believe me - and they will understand.

a.

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I have been off gluten for three months now. I have found in the first month, I had very bad withdrawals, i.e. all my symptoms of fatigue, bloating, etc. got much worse.

I have not found an increase in libido, it is still very low. I no longer have muscle pain; however, I still have bad gas. I have just developed a new kind of low grade bloating (I think I may be allergic to dairy, I will find out today). My fatigue too is better; I would say 70% of a normal person.

I regards to people not believing you, as you said earlier I think too people do not believe it because it is a fad. However, some people, such as people I know (in-laws) do not believe there is such a thing, in fact, they do not really even believe in food intolerances (weird), even though it is scientific; but they claim it is not. People just choose to believe what suits them, but if they truly care about you they will believe you.

I also can focus better, and find I get a lot more done at home, than I did before and no longer am I so tired that I have to stay in bed (nor have as much pain). I no longer get leg pain.

Cheers to your success! Keep up the gluten free life!!!!

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    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
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