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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.

I Don't Know How Much More I Can Take.
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4 posts in this topic

I see a lot of people post with such worse reactions and lots of other issues and mine are beginning to pile up. In short.. how the heck do you deal with so many things/issues?

 

Some background (totally optional read)... I started having colon spasms my freshman year of high school (2006) which were self-diagnosed at the time as period cramps. My senior year I got gastroenteritis and everything went down hill from there. The spasms got so bad I couldn't walk or function when they'd hit, I went on birth control to try to deal with a viscous D/C cycle that lined up with my periods (that worked for a bit), and the spasm attacks were getting more frequent. I went to my mom's GI and he diagnosed it as IBS, prescribed an anti-spasm medicine to get me functioning again and a slew of tests which I never finished. I had a fluoroscopy which went perfectly fine. I cut out caffeine, high sodium, high sugar and began limiting gluten to help cope.

 

Fast forward 3 years to today. I started being able to handle gluten less and less till finally, one weekend in February, I decided to try eating straight pasta again. I had two small bowls over two days and almost didn't make it to class on Tuesday because I was in so much pain and felt like my gut could expulse everything at any given moment. I went and got my blood testing done and came back positive according to my ttg IgA (90.8 AB/units). I went off gluten immediately and my world was changed. I started reading the forums and got my appointment set up with a GI at school to look at getting a biopsy. I figured out from this lovely source of celiac knowledge that I needed to start eating gluten again. The day after I started I got hit with a virus causing flu like symptoms and decided I couldn't deal with gluten and what I thought was the flu. Turns out that little virus attacked my eyes and I now, on top of being back on gluten, can't see in about 6 areas of my right eye, the biggest being just below my center of vision. It will either clear up in 3-5 months or I will just have to live with it. And that I could deal with... but I'm a college student at a rigorous university; my course load is very demanding. I'm also involved in leadership positions in extracurriculars, mainly a dance group where we have our huge semester show the week before my endoscopy. I'm in charge of publicity for that. Last semester, before I got hit with a proverbial medical issues bus, the show and my course work was enough for my body to completely shut down. And now I have glutening and vision loss. 

 

I just don't understand why all this is happening... outside of the mentioned issues I'm a perfectly healthy (my vitamin panel came back as all normal after 2.5 weeks off gluten), almost 21 year old who stays active and eats healthy 90% of the time. I don't drink, I don't party, I'm on honor roll, I swim 4.5 miles a week, I'm in a healthy supportive relationship. I'm doing everything I'm supposed to... so why is my body breaking?

I don't know how to cope with this because everything feels so out of my control. I have until the 19th of April to stay on gluten and I accidentally had a crumb of a brownie at lunch (I would have been more careful except that I'm supposed to start eating it somewhat regularly) and I was nauseous, dizzy and disoriented for a half hour afterwards and my body is reacting faster than ever. I'm just lost and looking for some help.

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Perhaps you can go to your doctor and get a note so that your schools disability center may be able to help you? Accommodations and whatnot? I'm not sure what they would be able to do without an "official" dx, but seeing as your sick enough as it is, you may be able to qualify for note taking and whatnot if you have to miss your classes.

 

I would contact them to see. It might be a long shot, but the idea of having a backup plan if you can't come in helps.

 

As a fellow college student, i understand completely. I got hit with this mess in the middle of the semester about two years ago. It is hard.

 

One day at a time. That is all you can do.

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Can I ask what purpose having the official diagnosis will serve? Your blood tests

are positive, and gluten makes you very, very sick. What benefit will you get from

forcing yourself to suffer through continuing to eat gluten for an official diagnosis?

You didn't say how long you'd been gluten free for, but I do know that you need to

be eating gluten for a good bit longer than a few weeks for an accurate biopsy result,

which I am sure from your reading you know isn't guaranteed anyway.

 

Basically, what will having an official diagnosis help you with, and if this test were to

come back negative, would you continue eating gluten? If you would stop anyway,

knowing how much better you feel, then you need to weight the effects of glutening

yourself for the purposes of the test against the benefits of having the official diagnosis.

There are some doctors who will diagnose based on the positive bloodwork and your

response to the diet, as well. You may want to speak with your doctor about that.

 

You know, I don't think I've ever had it properly explained to me why the positive blood

doesn't qualify as a diagnosis. Maybe someone with more scientific understanding can

jump in for me? What could cause elevated anti-gluten antibodies, other than Celiac?

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It sounds like you may be overexerting yourself. I'm in college with a rigorous courseload, too. Very stressful. I always find that I do SO much better at home on breaks - even though I eat the same gluten-free things as in college. I've learned the amount of stress (knowingly or unknowingly) I have directly affects how I'm feeling. I kept hearing that stress affects us, but now I know it's so very true! :/ 

 

From one college student to another, here's what I'll say in regards to coping with celiac... (We all know it's not easy and being in college makes it even harder.) What's gotten me through is my faith in God. He's the one who has all control, and I control nothing. Find those people who support you, encourage you, and be patient with you and hang tight to them. Take it day by day. Take care of YOU right now the best you know how, so you can get better and live a long, healthy life. Everything else will fall into place. Find things you enjoy doing. And stay away from stress! 

 

So sorry you are not feeling well. Keep your head up and hang in there! <3

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    • 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.
    • Could this possibly be related to celiac or a gluten intolerance?
      If you did actually have celiac disease, it can take weeks, months and years to recover from some of your symptoms, especially neurological ones.   Best to get screened for celiac disease.  It's a simple blood test.  Any medical doctor can do it.  But a GI doctor is needed for a diagnosis, since an endoscopy is part of the diagnostic procedure.  BUT you have to be consuming gluten to get accurate results! http://www.cureceliacdisease.org/screening/ http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ Keep on researching.  I wish you well!    
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