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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.

Feeling Low
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20 posts in this topic

I'm kinda new to the whole gluten-free living...I find myself having good days and bad days....sadly today is a bad day for me...I'm not talking about any type of reaction to eating gluten. I'm just talking about the whole overwhelming feeling that comes from being celiac.I'm not understanding why things just seem to be getting more difficult when it comes to coping with the gluten-free thing....Is anyone else in the same boat? I'm told take some vitamins to get my levels up so I do...then i find they contain gluten so i switch to gluten free vitamins but I find that they are too strong for me and may be causing other issues such as kidney damage. I stupidly switch shampoo's and find my hair falling out...so now having to switch to super expensive shampoo but im no longer losing hair..I just feel like i can't win and sometimes wish things could just be a bit easier....It seems like I react to everything soaps, lotions, hair care products....does it ever get any better?

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Unfortunately, I can not let you know if it will get any easier, but I am definitely in the same boat as you are. I'm very new at this and it is very hard to get used to and maintain. I'd love to hear what other (more experienced members) have to say!

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In the beginning it can be really hard. I never realized how much gluten impacted almost everything in my life. I was mad, angry, jelous, and happy(to know how to feel better without alot of drugs) all at the same time. It was crazy. A lot of mistakes were made in the beginning, but it was a good learning tool for me. Three years into this and I still make mistakes. It happens, so don't beat yourself up.

Last year when my youngest son was diagnosed, I got to go through all the emotions all over again with him and then some more. I found myself having to check products that I usually didn't buy or want but he did. He had a hard time dealing with the emotional aspect of it at first. I wish I could have taken the pain away, but he needed to deal with it in his own way. Today he handles most things like a trooper. But occasionally he still has a down day, like today. He was telling me how it wasn't fair that his brother got to eat doughnuts and pizza(we are reintroducing gluten to him after 3.5 months of being gluten free). He was crying. We just let him work through the feelings and he eventually came out of it pretty quickly.

I bought a couple of books that helped in the beginning. Celiac for Dummies by Dana Korn and Celia's Marketplace grocery shopping guide.

I took a day and went through my kitchen and got rid of anything that I couldn't eat or the other's in the house wouldn't eat and donated it to the food bank. I set up a dedicated shelf in the pantry, drawer in the fridge, and small counter area just for the gluten eaters. I wanted my kitchen mostly my space since I do most of the meal prep. I gave the kitchen a good scrub down also.

I replaced any scratched/worn cookwear and plastic ware or gave them to hubby to use for gluteny things. I bought a new toaster, cutting boards, cooking utensils, pasta strainer, bakeware, griddle, and waffle maker. (a lot of my stuff was worn out anyway or hand me downs from my mom) This can be expensive so sometimes it's not feasable all at once.

Any baking items, condiments, herbs/spices that might have had cross contamination(I was bad about double dipping) I replaced. I banned any baking with regular flour and only made gluten free baked goods. The others were allowed to bring stuff in from the bakery if they wanted and it had to be handled as not to cross contaminate. All shared meals are made gluten free, no cooking to order or cooking two meals. I didn't want to go there.

I checked to make sure all of our personal care products were gluten free.

This all worked for the first year. Eventually I started having problems and had to eliminate any gluten free products that had gluten free oat cross contamination(I was aware of my severe gluten free oat sensitivity 7 months after I went gluten free, but didn't eliminate the cross contamination...see, mistakes still happened :P ) I also put my pets on grain free food after my youngest son was diagnosed since the kids do most of the feeding of the animals. They are doing well grain free too!

You can do this! Is it going to be hard? Sometimes yes. But all of the time and energy is so worth it to get my health back. I consider myself a veteran now and things are much easier now.

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I know this might not help but i am in the same boat. I got diagnosed in January and im sorry to say i haven't felt any better since, maybe a little less tired but that's about it. Food is a constant daily battle for me along with the emotional upset and severe anxiety. I guess it won't make you feel better in the sense of the future but knowing that there is help on hand like this forum for example really helped me through the early months just knowing i wasn't the only one! My severity of celiac is way way through the roof, highest count my doctors have ever seen so i know it will take me a lot longer than others to feel better, they reckon at least 2 years for me. But my mum felt 150% better after about 3 months!

I also changed all my shampoo, make-up, body care things, other wise i got tiny welts and blisters all over me...but now thats ok, except when i go to the hairdressers! So that made it a bit easier.

I guess it is challenging and tough but once you find something you can have its overwhelming joy! And i do find when i have a good day i really appreciate it and don't get my hopes up that i will be fine the next day too, its a day by day basis. At the beginning it will just feel like failure after failure, even now for me after so long its still finding things out and yep i ave really down crying days feeling like there is no hope but there is! I just focus on how i was before i was ill and get support from doctors, dieticians, friends and family. Seemingly the most i can do right now!

I do wish you the best of luck and hope you can find some light around a dark cloud at the moment.

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I understand how you feel. I'm right there with you!

It takes a lot of detective work and label reading at first..and when we are first DXed, most of us aren't feeling very good. We're having to spend a lot of time and energy we don't have, learning how to cope, and cleaning, and cooking from scratch.

Our vitamin/mineral levels may be out of whack too?

I've been doing a lot of reading and *they* say it gets much easier. So far, it's been a struggle for me because I've found secondary food intollerances, which takes away a lot more foods.

I guess we need to just try to take it one day at a time? It's ok to feel sad, because in a way we are greiving the loss of foods and old habits. We can slip into depression if we let ourselves dwell on the things we can't have though. We have to try to learn to look at life with positives and what we CAN have..it's better for our overall health.

May I suggest starting a gratitude journal? Just a little notebook would do. Be sure to write down at least one thing you are grateful for each day. You can write down more than one thing, but doing so helps you look for "positives" when you're mostly feeling negatives. It's a simple thing..but it helps.

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I, too, am newly diagnosed. The frustration about what you can/can't eat is definitely a factor. However, I have experienced more emotional ups and downs since I have removed gluten from my diet. Don't understand this.....anyone else experience this? I have been taking meds for clinical depression for over 25 years and have not had problems at all. But since going gluten-free, I have experienced several crying jags.

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...does it ever get any better?

Yes it does :)

I am not saying it is ever easy, but It does get better and it is worth it.

As your body heals so does your mind and soul.

Hang in there ,and come to these forums when you need to vent ,information or just need a BIG cyber hug.

(( HUGS))

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I, too, am newly diagnosed. The frustration about what you can/can't eat is definitely a factor. However, I have experienced more emotional ups and downs since I have removed gluten from my diet. Don't understand this.....anyone else experience this? I have been taking meds for clinical depression for over 25 years and have not had problems at all. But since going gluten-free, I have experienced several crying jags.

When I first when gluten free , I was a mess,emotions all over the place,anger,sadness ect..As your body detoxes from the gluten this may happen. Sometimes it is part of the withdraw from gluten.

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Hang in there, take one day at a time. I thought I was loosing my mind, I couldn't focus, concentrate, moody, nasty @ times,short tempered and down right miserable I can tell you it gets better. I still have good days and bad, but it's all in the healing. I'm still going through a barrel of test, because my new GI ordered them. Please take the advise of all the experienced people here, I have and it helps.

I started with a new toaster for me and cleaned out the house of ALL gluten, brought new non-stick calphalon fry pans. When our sons are home (one on his own the other in school)they eat what I prepare. I do have to have sandwich thins for my husbands lunch, they are prepared on his cutting board.

It has made my life so much easier having the home gluten free. I'm lucky I have no young ones home. Every week is new, I'm still finding food items that work and taste just like before. It's all trial and error, make sure you read all labels. When in doubt leave it out and research it @ home so next time you know. Check out the medication list if you are on any, google gluten free medication or call the drug company.

Take each day with a smile and feel better.

Cathey

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Oh, I am so sorry that you are going through such a rough time. When I was first diagnosed it came as a huge surprise as I found out through screening that I had celiac. I did not believe it and was in denial. I love food too much and thought there was no way ever I would give up gluten. Well, until my doctor told me I must and ordered that I also get biopsies done. When they showed major villi blunting that was my wake-up call. I actually made a list of about 75 things I wanted to have one more time and continued eating gluten until I had every last thing on that list. Then I went cold turkey - that was the end of March. So, I have been gluten free ever since without cheating even once.

Like you the first few months were tough. Every food commercial on TV made me mad and/or sad, even if it was some yucky food I wouldn't have had before, anyway! I was such an emotional mess with mood swings all the time. I cried at anything and everything. I felt very sorry for myself. As a cook and baker I did not do much gluten-free bread baking to begin with because I knew it would not even come close. I actually avoided the kitchen for a bit (which is weird because that is where I am happiest). I grieved. I had anger.

After the first few months, even when seeing no positive physical changes because I did not feel sick from eating gluten, my attitude suddenly changed. It was practically overnight. My passion for cooking and baking returned. I was asked to teach gluten-free cooking classes. (I taught regular cooking classes before.) I continue to test recipes. I've always been a creative cook but you should see me now! It is such fun to be almost forced out of your comfort zone to try new things. I now bake with amaranth, quinoa, teff, sorghum, garfava, tapioca, corn, chickpea (and many more) flours. When I heard of those flours before I sort of inwardly rolled my eyes thinking that sounded way too healthy for me! Isn't that crazy?

My diagnosis may have actually saved my life and I feel blessed. I now see life differently in general. I take better care of myself because I see the whole picture now, not just little glimpses.

Just keep hanging on to hope because it is always there, no matter what the circumstance. Everyone is different and heal mentally and physically at different stages. Hopefully things look sunnier for you very soon! :)

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Hi, it does get better but there are still times that are hard. I too am feeling low today. I usually do fine but I have definitely had my ups and downs. I have been gluten free for several months and overall I am doing some better. I just found this forum today and it has lifted my spirit so thanks everyone!

I am spending New Years Eve alone while my hubby and kids are out with family. I have a mild fever today and my inflammation seems to be worse. I have spent a good majority of the day in the bathroom and you all know why I was in there. I didn't want to deal with that around extended family or have an accident so I stayed home. That's not why I am down, I am down because my hubby (best man in the world) feels like its an excuse to not go. Maybe I am too prideful to have an accident in public or to occupy the bathroom. I don't use the excuse too often but today I couldn't do it. What a "crappy" way to start the new year ! ;)

I am sure tomorrow will be better. I have been greatly blessed. I loved the idea of the gratitude journal that someone posted.

Good luck and don't give up! Just keep in mind that it is a process. Hang in there and Happy New Year!!!!!

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Hi, it does get better but there are still times that are hard. I too am feeling low today. I usually do fine but I have definitely had my ups and downs. I have been gluten free for several months and overall I am doing some better. I just found this forum today and it has lifted my spirit so thanks everyone!

I am spending New Years Eve alone while my hubby and kids are out with family. I have a mild fever today and my inflammation seems to be worse. I have spent a good majority of the day in the bathroom and you all know why I was in there. I didn't want to deal with that around extended family or have an accident so I stayed home. That's not why I am down, I am down because my hubby (best man in the world) feels like its an excuse to not go. Maybe I am too prideful to have an accident in public or to occupy the bathroom. I don't use the excuse too often but today I couldn't do it. What a "crappy" way to start the new year ! ;)

I am sure tomorrow will be better. I have been greatly blessed. I loved the idea of the gratitude journal that someone posted.

Good luck and don't give up! Just keep in mind that it is a process. Hang in there and Happy New Year!!!!!

Hello..and welcome!

I'm so sorry to hear you had to stay home and miss out on the festivities. Your hubby saying you were trying to use "toilet issues" as a free pass to stay home must have really stung?

I've walked in your shoes..and completely understand how humiliating it would be to have an "accident" in public. At my worst there were times when I had to run to the bathroom in my own home and didn't make it in time. Can you imagine running to public rest room and finding a waiting line? :o

It sounds like you may have been glutened? So easy when you're new to the diet or have others around you that aren't gluten-free. Drink lots of water to flush your system and stay hydrated. I'm wishing you a speedy recovery!

"crappy holiday" means something different to us..doesn't it? :P I'm hoping this will be your last one!

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"Crappy Holiday" is pretty funny! Thank you for your advice, I really appreciate it. I just feel better knowing that others understand. Here's to a great, gluten free year! :)

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What you are experiencing post DX is what we all have experienced. You are not on a diet. That would indicate that what you are doing is temporary and we all know that is not true. You are experiencing a Paradigm Shift. "Think of a Paradigm Shift as a change from one way of thinking to another. It's a revolution, a transformation, a sort of metamorphosis. It just does not happen, but rather it is driven by agents of change." I just looked this up and it is exactly what we go through. If you had a limb removed or lost one of your senses, you would not just not see again or walk again, you would have to adapt everything you do and everything you think about your way of life to that change.

It IS very hard, and even after 4 years, I still have my moments but I promise you it does get better. Eventually it will just be your life as it is, with all of the possibilities of the joy, happiness, sorrow, pain, love and humor that everyone else experiences all over the world. And eventually you will be able to experience joy over eating again, without really having to think too much about the process because it will become second nature.

My heart goes out to you. This website is a great place for information and support. Use it often.

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Thank you everyone for sharing your stories! They were all great to read through, and very very motivational!

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I felt overwhelmed and sad too at first.

I will say I just had to start switching shampoos and moisturizers. Dr. Bronners peppermint soap is cheap and works great as a shampoo!

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I just really wanted to thank everyone for expressing there stories with me....I feel horrible I wasn't able to respond sooner but due to the holidays it was difficult to get back to the computer....It makes me feel not soo alone with such a response from everyone. Its nice to hear how its normal to have fits of feeling out of control....the sad moments....the mood swings...People that don't have to deal with Celiac don't understand how difficult it can be or how emotional it can get

I'm thankful for each of you for giving me such a wonderful response... ^_^

Its nice to know when I get those feelings I can come here for support...this is a nice place with good people that understand... :wub:

Thank you all again for helping to make me feel better.. :)

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I felt overwhelmed and sad too at first.

I will say I just had to start switching shampoos and moisturizers. Dr. Bronners peppermint soap is cheap and works great as a shampoo!

Thank you for the info....ive been looking for new shampoos at decent prices...

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When I first when gluten free , I was a mess,emotions all over the place,anger,sadness ect..As your body detoxes from the gluten this may happen. Sometimes it is part of the withdraw from gluten.

Hearing this really helps to make me feel better....Ive never been the emotional type...well nothing to much out of the norm...but since going gluten free I find myself having extreme up's and down's....the crying fits the getting sometimes even angry over what normally wouldn't bother me..its almost like my gluten-free diet has made me a emotional mess... :blink: hopefully things will even out and the swings will go away...or at least calm down

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My daughter is going through what you are going through. I feel for you because I see firsthand what celiac disease does to a person emotionally.

Keep in mind that things could always be worse than they are. This is something perfectly workable. You've had years upon years to get used to the way you did things; it's not going to be easy adjusting all that to a new way of life.

The good thing is that this is something that is really going to probably improve your quality of life, since most gluten is found in processed foods that we shouldn't eat too much of anyways, right?

Good luck to you. It's always hard in the beginning, but hopefully soon you will feel some relief.

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I'm not sure when I noticed I had tinnitus, but this was aggravated to say the least. The migranes and anxiety reached their peak. At that point I was convinced I had developed some form of meningitis. Falling asleep at night was like passing out after a long day of not being able to do anything. I was having panic attack after panic attack. I thought that it might be a tumor instead and I was convinced that I wouldn't even be alive for 20th birthday. There was a weakness that radiated down my left arm and leg. At this point, I was desperate to get even a month left to live. I was constantly pleading to a god I stopped believing in a long time ago for more time. I went to the doctor for the first time in years, convinced that I had meningitis. Both my grandmother and my GP laughed at the notion. The GP diagnosed it as nerve pain, gave me antibiotics for my constipation, antidiarrheal medicine, and an antianxiety and sent me on my way for a couple weeks. I took the antibiotics for a bit but ended up spilling them into the sink at which point I figured I probably couldn't use them anymore I don't remember any of my gastro symptoms then as i didn't think anything of them. All I can remember is being constipated for days on end, which wasn't very fun either. Eventually, I went back to the GP and she prescribed me elavil for my tinnitus and my nerve pain, which made just about everything that bothered me wither away at that point. The strangest thing, actually, was that my symptoms went away BEFORE I started taking the pills. Of course, I didn't know what happened, but I had a day when my symptoms went away before coming back again and I didn't want to take a chance, so I started the medication right away, and they never did come back. Swell right? WRONG.   I had a happy few months between Late March and August that seemed swell, except that I couldn't quite enjoy things like I used to, and I was saying things to my online friends that made them shy away from me. I was convinced at this point that I was just going crazy. My mother is schizophrenic so I just sort of took it as is and was getting ready to tell my doctor and see if the symptoms would go away if i stopped the pills. I didn't do this in reality, as a matter of fact, I told the GP I felt great and she suggested that I increase the dose from 10mg to 20mg. I didn't do this for a while, but I got into an argument with someone that I was just starting to become friends with and decided that enough was enough. I popped that extra 10mg and was ready to crank it up a notch to keep the depression at bay. It seemed to be working, but about a week later, I began to develop a burning pain under my right rib. Uh-oh! I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah.... Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer. I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point. WBC 8.7 (normal) RBC 4.94 (normal) I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering. I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great! But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils. This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.)   Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee! -Lost 6 more pounds between that point and about a month ago. -Kept taking paxil and had several more reactions similar to the one that put me in the ER. -Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating. -Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned -Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely -Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.) -Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful.  -Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat. -My hands and feet felt like blocks of ice, and my feet burned when I got in the shower. -Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it -Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell. -Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it.   I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear. "We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines. I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause. Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms) I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was. I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back. Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains. I hope I can eventually get diagnosed and get used to this place.        
    • https://www.starbucks.com/menu/food/hot-breakfast/gluten-free-breakfast-sandwich "It's all prepared in a certified gluten-free environment and sealed for your safety. We then warm and serve it in its own oven-safe parchment bag to avoid any cross-contamination."
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