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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About Trixlm

    • Rank
      New Community Member
    • Birthday 10/26/1989

    Profile Information

    • Gender Female
    • Interests Holistic health nut! Love the outdoors and cooking! I love warmth, intellectual conversations, and embracing life itself. I'm a fitness junkie!
    • Location Denver

    Trixlm's Activity

    1. Trixlm added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Body Pain
      So I've been gluten free for over 4 months (non-diagnosed). I had an eating frenzy for the
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    2. Trixlm added a post in a topic Uticaria, Lactose, Blood Type   

      As with any other allergy you could possibly eventually have an anaphylaxic reaction right? I mean how can you tell... I get scared sometimes since it gets triggered so differently.. I don't want to be in a Zumba class and collapse.. I notice when I do I turn bright red and feel like I'm on fire then ill have shortness of breath because of activity induced asthma :|.. Is it getting better for you now? I feel like the more I take time to realize all this the more I feel like my list of problems rise lol.. Is it from some brain fog lifting so I just checked out your list and it sounds a lot like me! Do you mainly eat whole foods? I looked at a hit food list and it makes gluten-free in addition to this more restricted. This is tough if it helped you with your heat intolerance/exercise reactions I really might have to try.
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    3. Trixlm added a post in a topic Uticaria, Lactose, Blood Type   

      Yeah the hives with exercise is weird. My mom has it as well! And I agree on the process of elimination diet. I match that of what that diet says but I understand that it's not backed with medical research so it wouldn't apply to everyone. Sucks with the dairy issue because I love cheese on everything ;(
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    4. Trixlm added a post in a topic Uticaria, Lactose, Blood Type   

      Sorry I didn't want to provide misleading information just thought it was interesting.
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    5. Trixlm added a post in a topic Uticaria, Lactose, Blood Type   

      This is a link that goes over Dr. Peter J. Adamo's blood type philosophy...  I don't expect it to work for everyone or be followed but I thought it was interesting!   Was curious if anyone followed it and it makes sense that a majority of celiacs are type o because of how common the blood type is, I didn't know that! Its geared more towards weight loss but I feel that the layout it provides makes sense if in fact you have some of these food allergies that it suggests you to avoid. I thought it was neat how it lined up to the fact that I started noticing my trouble with dairy, certain grains and how I need to be active and love being active even though I have been suffering from fatigue. There's also information on other blood types.
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    6. Trixlm added a topic in Other Food Intolerance and Leaky Gut Issues   

      Uticaria, Lactose, Blood Type
      A few funky topics in one
      I don't have my follow up visit until next month to discuss any further diagnosing considering I can't help to be gluten-free and feeling wonderful!  But now I'm starting to notice that when I have any bit of dairy besides eggs, I don't seem to have problems with eggs...  I get the severe sharp stomach pains and bloating.  Are my symptoms to other possible food allergies amplified because of a "cleaner diet" transition?  I've always ignored my gi symptoms in the past so I'm wondering if I've always been kind of lactose and just recently noticing or can other post gluten-free reactions to other things exacerbate once you go through process of elimination?  Now I'm nervous I really have to cut out dairy...
      Last night I was using a massage chair and started getting hives... I have physical/exercise uticaria and was wondering if anyone had something like this and if it would all be linked somehow.  It's not been as bad since I've been off gluten but I still get them sometimes.  Like if I run on the treadmill or run outside I start getting welts in between my thighs, burning itching all over my body.  Or if I get a back massage and the person starts to do the "chopping" massage I get hives as well and if I wash my car with my garden hose the cold water pressure that hits my legs will give me horrible itching, burning, welts  .
      Is there any correlation with blood type and celiacs/gluten intolerance?  The "blood type" diet was part of a conversation my co-workers were having and what's interesting is that its suggested that people with blood type 0 should be on more of a "paleo" style diet considering it is the "ancient" blood type, the newer food groups like dairy, grains, etc are difficult for the body to process.  My blood type is 0 and was wondering if there are any celiacs that are as well.  I don't expect this but what some research is saying is that about 50% of type 0 are celiacs.
      Hope you are all having a wonderful day
      • 12 replies
    7. Trixlm added a post in a topic 2 Months Gluten Free & Still.....   

      So I've been having the same issues.  I have been nearly 100% gluten free for the past 3 months... I still have symptoms like fatigue, diarrhea, bouts of brain fog etc and considering whatever damage has been done it takes a while for your body to regenerate and heal. Do you at least feel better overall?  I'm not an expert and have not yet been diagnosed with celiacs or non-celiac gluten intolerance but from my own experience, advice from this forum, and personal research it is all about what you eat and a lot of times people with this problem are given dense nutrional options like gluten free pizza, gluten free donuts, cereals, breads, etc... but what a person in this condition really needs are WHOLE foods, almost paleo and whomever can tolerate grains and some dairy. So in that sense try a break from anything processed and opt for whats tolerable that is natural in its own form... so nothing in boxes or cans, fruit, some nuts, animal proteins... it is all individual to what your body can or can't handle other than the fact that you can't have gluten. Most importantly check for possible vitamin deficiencies that you may need to supplement on and be patient because it's most likely your body trying to heal I hope you get better, I know it's tough but you're on the right track, give it time and maintain positive thinking
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    8. Trixlm added a post in a topic Lab Results Negative. Everything Else Says Positive. Celiac?   

      I've been so disciplined it's becoming habit to steer away from certain products and I use a few handy apps on my iphone to scan items as well   I respect your decision to go without diagnosing I feel its pretty evident that these severe reactions could be anything but gluten... I've been contemplating going gluten free without the dx because i'm having a tough time even choosing to eat it.  I naturally just go for an alternative and i'm so in fear of a reaction since they haven't completely subsided that I just won't have it anymore.  It seems once you figure things out its better to keep getting better rather than taking 10 steps back to make wasteful visits to misinformed docs... Still want to get my other vitamins you mentioned checked so I can start supplementing what other deficiencies I may have.  That's a long time for such big amounts of gluten, it makes me nervous thinking about it because I still have plenty of symptoms subsiding.  It's possible to have negative results and have post symptoms but still have antibodies?  
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    9. Trixlm added a post in a topic Lab Results Negative. Everything Else Says Positive. Celiac?   

      YES brain fog had been one of my worsening symptoms. I would joke around and say that "my brain is so gassy because I keep having brain farts"... lol along with what I knew deep down was going on with my tummy   It's definitely getting better... I had the worst short term memory where I couldn't remember one thing I looked at or if I memorized barely 6 numbers to write down I would write it in a scrambled or almost dyslexic order.  I would stumble on everything, drop everything, walk somewhere I wasn't supposed to. trip on my own shoes. I was horrible at responding to texts and emails. I would think something but not say it and wonder why the person I was mind speaking to wouldn't respond LOL weird things like that... I was always so confused and would be so hard on myself that maybe I'm lazy and careless but my brain to body connection was so bad I was flimsy it was embarassing   I now have hope to get better and I get excited to jump on the forum everyday. Everyone here is so supportive its such a wonderful community... Thanks Diana I wish the same for you as well
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    10. Trixlm added a post in a topic Lab Results Negative. Everything Else Says Positive. Celiac?   

      I thought as usual that I was just crazy! I live in Denver & I cannot stand the cold but at the same time I am more heat sensitive than anything.  Often times I wake up in the middle of the night sweating then I'd have to shed completely with my air purifier fan blowing straight at me, then by the morning as I get ready for work I start to burn up and even if it's cold outside I'll be in a plain t shirt and get into work almost sweating.  I'm sure the stress that my body feels responds through the sweating, you feel like death... then my blood pressure would drop and I would get really light headed. My body temperature is normally 97.0 or below. Do you have that low of a temp as well? Do you still have to regulate your body temp ? And I love 40-60 degress outdoors lol anything lower or higher my body freaks out. I could seriously just stroll around naked and have a sheet around if I get a temp drop. It's like i'm going through menopause as what my co workers would say
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    11. Trixlm added a post in a topic Lab Results Negative. Everything Else Says Positive. Celiac?   

      Yes I definitely feel better without the pill... There's health care vs medicine care and if you can find the root of the problems I am a strong believer that you can heal without synthetic treatment I am wanting a proper diagnosis. I know that's a tough thing to ask for considering how its so over looked... I am seeing dramatic improvements but I still don't feel well even though I have more energy. I have a lot of decisions to make I'm so excited to have found support here its all a bit clear now, thank you
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    12. Trixlm added a post in a topic Lab Results Negative. Everything Else Says Positive. Celiac?   

      Hi neroli! I'm excited to hear from you. So now what I am going to deal with is to either decide to maintain gluten-free or get that formal diagnosis... Everyone including friends don't really understand what I'm going through and not taking it seriously because I have nothing to back my claims of gluten allergy... I even had a friend telling me there's no such thing as gluten intolerance unless its full blown celiacs ;( I may be willing to go through the pain if that's what it takes... I have a follow up appointment next month and was hoping to be referred to a gi specialist. I'm only taking 2,000 iu of vitamin d3 as instructed so far and will bring it up to my pcp next month. Even though I've gone gluten free for a while I still feel tired. I have more energy, no bloating, still a bit of diarrhea, but lost weight and slowly getting over that "not feeling well" feeling. And I am also heat/temperature change sensitive. I would like to stay off but I fear rejection from my peers that its just all in my head. Are those post gluten-free symptoms normal?
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    13. Trixlm added a post in a topic Lab Results Negative. Everything Else Says Positive. Celiac?   

      Thank you much Lisa for your effort! I did post real late so I understand the #286 is total iga and I the other two are the only others he ordered my doctor put me on only 2,000 iu of vitamin d3 so I'm still taking that...
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    14. Trixlm added a post in a topic So Many Conicidences, Could It Be Gluten?   

      Hi Sarah! I too, am a fitness fanatic and participate in many classes and gym activities and I feel your pain. I've just been recently putting pieces together myself about possibly having this problem. Your post is not wordy as I am awaiting approval on my extensive post, haha! Your symptoms are almost identical to mine and although I don't drink caffeine I've tried this remedy and thought I must be crazy that it doesnt pick me up at all! I dont have carpal but have tingling and numbness in my hands and feet often which is an interesting coincidence..I feel your pain of this horrible fatigue and want answers myself... I am still all new to this and although I don't have answers I wanted to post here to give you some hope because it is a terrible thing not knowing who to talk to or where to start and diagnosing yourself stemming from the craziness. I feel crazy all the time because I think it's one thing then I just figure I'm crazy. In the end I know you will get better and I'm excited that I found this place. I'm here for support and wish you the best, we are all getting closer! Get well soon and keep fighting!!!
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    15. Trixlm added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Lab Results Negative. Everything Else Says Positive. Celiac?
      I really need some insight, help, & advice... Warning this is long ;(

      So I've suffered from depression in the past & severe fatigue for as long as I can remember. I never took medication for depression. I never used drugs or smoked ever, rarely drink alcohol. I absolutely LOVE sleep. It is my best friend. I am a 23 year old femal at 5'2 and typically 105 lbs. I've always been healthy overall.

      The past 7 years I've been more active. I would jog/ run for the most part about 3 times a week.

      In 2009 I was having severe chest pains while eating at a birthday party and I thought I was having a heart attack. I was rushed to the hospital and it turned out that I had an esophageal tear from acid reflux and was admitted to the hospital. I was waiting to eventually have surgery but luckily the doctors suggested to allow it to heal on its own under their watch to avoid surgery. I was dx with gerd and was questioned if I was bulimic!!! I was angry and offended but admitted to the fact that I get heartburn pain often and would sometimes vomit because of it. But I am naturally thin and had no reason or desire to that even being the last thing on my mind. I then just watched what I ate and stopped the Prilosec prescribed after a months use.

      About 4 years ago I adopted the whole "fitness hype" when bodybuilding was becoming more mainstream popular. I ate more whole foods with exceptions of those "cheat meals." I had an iud (sorry tmi) placed a year after.

      Towards my year anniversary of iud placement my symptoms of fatigue worsened and my acne, mood, depression increased. I consulted with my primary care physician about my concerns and was finally put on lexapro. I gave it 6 months and decided it was not for me. During that visit she ordered a comprehensive panel, CBC, c reactive, tsh, for blood work. Everything was fine ruling out anemia or thyroid issues that could cause my problems but I had borderline low mcv, mean platelet volume, mean corpulusculur hgb, and extremely vitamin d deficient. I was instructed to take a high dosage of vitamin d after that...

      I then researched iud complications and that it might have been contributing to my condition. Had it removed and went completely hormone free. I decided throughout that year of suffering that I would "better myself" even more. I smiled more often and joined yoga classes, scheduled a more balanced exercise regimen of 3-5x a week, and ate more "healthy" foods (ie: every grain, whole, wheat, pastas, etc.). But I found I just wasn't getting any better.

      The past six months I started to journal my food intake through my myfitnesspal for vitamin/macro nutrient purposes and noted my mood/reactions/feelings throughout my eating habits and activities. I consumed more whole foods and added vitamins and excluded any supplements containing fillers, artificial sweeteners... I didn't notice much of a difference. And once again increased my intake of "healthy" alternatives of wheat products.

      I still couldn't get a hand on why I was getting worst even though I was getting "better." I searched everything and one day I ordered a jimmy johns sandwich. (I love them!) Had nothing but turkey, lettuce, sprouts, tomatoes, no cheese, no mayo, served on their wheat bread. I ate half and immediately had a distended belly. I had severe stomach pains, nausea, bubbly gas, burping, indigestion, and vomited shortly after. My co worker was there during this episode and joked with me that my tiny body looked like I was 8 months pregnant and asked if I was ok. I had a headache, felt exhausted, and took a nap when I got home. Thankfully that was a Friday and I slept nearly all day the next.
      I got to thinking about how my co worker reacted and how all of my coworkers always joked about how gassy and bloated I always was. I'm a jokester so I was always open about talking about my constant diarrhea issues and burping outloud. I just never took it seriously or brought it to my physicians attention because I figured they were normal symptoms because thats what happens when you eat?

      I was so discouraged at that point which led me to googling every single symptom I had. I started coming across symptoms of food allergies because of the gi reactions I would have after meals. I looked back at my notes and realized that it matched like a puzzle piece to celiac/gluten allergy symptoms. I had always overlooked this but I have always been bloated, gassy, having diarrhea, mood swings, horrible memory, fatigue, aches, etc the list goes on! What stood out so strongly was the fact that after certain meals was when I would have the episode the strongest. I did my own experiment of excluding gluten completely. I immediately felt better. My acne was a huge indication because my cystic acne stopped and the little breakouts I would have would clear overnight. I had energy, I stopped taking naps at work, I lost 10 lbs(I was 120), tummy was flattest its ever been, and the bloating subsided significantly. But I was still slightly fatigued through it all and decided to make an appointment.

      Last week my primary care wasn't available so I saw someone new. I brought up valid concerns that linked to celiacs and he brushed it off and said that there's no way a healthy 23 year old like me would have these problems. He started going over my medical history then went into a spiel about reassuring me I don't have cancer. It was such a waste of time and irritating because I felt that he had a preconceived idea of me that I might've suspected cancer given the fact that I work at the cancer center!!! I never even brought up anything to do with cancer! At the end of it all he felt that my depression was a manifestation of my fatigue even though I wasnt necessarily depressed and to trial different meds to see which would work. He ordered a CBC and celiacs panel but they all came out negative.

      Keep in mind he spent 10 minutes with me and I brought up my concern that I had been avoiding gluten for 6 months unknowingly through most healthy eating and the past 3 months nearly gluten free and last month 100% gluten free. Also my gluten free vegan protein supplements contain glutamine in addition to glutamine supplement, I have been taking probiotics, and fish oil which I've read sped the healing process if in fact this is celiacs. I pleaded that this would all probably affect results and he said if in fact I had gluten allergies/celiacs that it didn't matter and results would be positive.... I just wanted to scream...

      I'm not doing this because of a trend. I never even knew of this until I went crazy for answers. And I definitely wouldn't waste my time/money for a placebo effect. I am tired. I feel like crap and I'm sick and tired of being sick and tired. It's a physically and mentally painful feeling to go through my 20s knowing there is something wrong with me and that no one can figure it out. I'm hitting dead ends and I want to know as someone who has celiac or dealing with a family member, misdiagnosis, etc what you think. My mom btw is very anemic and diabetes runs in my family. My grandmother passed away from breast cancer. I love pasta, breads, I'm your typical carboholic. But I have no problems like this when I eat white or brown rice carbs. Small amounts of wheat makes me very sick. And I wake up sometimes in the middle of the night because my feet and hands tingle like they're dead and I swore ghosts slept on me even when I slept straight on my back. I get random patches of hives. Raised bumps and sometimes blister fluid filled looking, I ignored them and thought they may have been bug bites-they were extremely itchy and go away after a few days...My weight fluctuates quite a bit.. I don't know what else to add besides the fact that its just straight misery dealing with this and I smile through it as much as I can. I just want to make sure I'm doing the right things and not diagnose myself without further evaluation and valid information. I will list my blood work below. Anything helps. I can't wait to hear from you all!!!

      St stands for standard range. I apologize f it's sloppy. It's a lot to type lol! I only posted results that had possible significant value and of course the celiac panel. My comprehensive, glucose, and tsh have beautiful numbers so I didn't add them.

      Celiac panel---

      Immunoglobulin A- 286 St 66-436

      Tt IGA- 4 St 0-19

      PEPT IGA- 4 St 0-19


      White count-7.5 st 4-11.1
      Red count-4.75 st 4.18-5.64
      Hemoglobin-14.3 st 12.1-16.3
      Hematocrit-43 st 35.7-46.7
      MCV-90 st 80-100
      MC HGB-30.1 st 27.5-35.1
      MC HGB CONC- 33.2 st 32-36
      Platelet-303 st 150-400
      MPV-9.1 st 9.6-12.8

      Vitamin D-15 st 30-100

      Sed rate-3 st 0-20

      C reac- <.5 st <1.0

      A1C-4.7 st 4-6
      • 16 replies

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