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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.

Just Diagnosed: How To Keep Eating Enough?
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I just started my gluten-free diet a bit over a week ago and glutened myself somehow a few days ago. I was already starting to feel much better till that happened, and since then I haven't been back to that good place yet. Although I've worked hard at being careful with what I eat, I'm back to my old stomach symptoms (bloating, pain, random bouts of "D"). So in order to function, I've gone back to my old habits before being diagnosed...

Before knowing I had Celiac, I would usually eat something "safe" for breakfast and then only snack enough to get me through the day (maybe a yogurt or apple w/peanut butter) until I got home or somewhere I felt safe enough to eat dinner. I'm doing that again, and loading up on pepto bismol and imodium whenever I have issues. I'm in this cycle of taking a bunch of meds one day, being stopped up for the second day and restricting my intake out of fear, and then having issues all over again the next day regardless.

My question to the wiser Celiacs out there: What helped you keep eating enough when you were first starting out? How do you stabilize your digestion when it's still funky? A lot of people's posts here have terrible complications and a lot of hopelessness. I'd like to encourage some replies that might have some hope in there somewhere!

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Before knowing I had Celiac, I would usually eat something "safe" for breakfast and then only snack enough to get me through the day (maybe a yogurt or apple w/peanut butter) until I got home or somewhere I felt safe enough to eat dinner. I'm doing that again, and loading up on pepto bismol and imodium whenever I have issues. I'm in this cycle of taking a bunch of meds one day, being stopped up for the second day and restricting my intake out of fear, and then having issues all over again the next day regardless.

My question to the wiser Celiacs out there: What helped you keep eating enough when you were first starting out? How do you stabilize your digestion when it's still funky? A lot of people's posts here have terrible complications and a lot of hopelessness. I'd like to encourage some replies that might have some hope in there somewhere!

I did exactly the same thing, especially if I had to go somewhere...eating something "safe" for breakfast and then not eating much until I got back home. And taking Immodium as needed. It took me almost six months to consistently feel good every day without issues. Well, that is until Mon. when I decided to see if I'm still lactose-intolerant. And the answer is YES so the past couple of days remind me of the not-so-pleasant "bad old days". I figure it's just taking time to heal. Even after going gluten-free on April 9, I still continued to lose some weight. It's hard to eat when you feel like crap.sad.gif

So I have no words of wisdom on how to stablilize your digestion but you're really very new to eating gluten free. Give it some time...I wondered if I'd ever have a good day. But I definitely think there's hope and as long as I'm really careful, I feel great (Mon. not withstanding). Are you also dairy free? If not, you might want to give it up for awhile, too. Hope you feel better soon!

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Well, for starting out on the gluten-free diet:

Don't eat any sugar.

Don't eat any dairy.

Don't pull little girls pigtails or dip them in the ink well. Unless it's Friday and you're bored.

Don't eat any soy.

Don't eat any processed foods.

Try a pro-biotic once a week.

Eat like a monk but limit the wine to normal people levels.

Don't leave home without your Pepto Bismol and aspirin.

Don't jump out of a perfectly good airplane.

Carry around some Altoids peppermints for gas relief (sorry processed but ok exception).

Consider eliminating nightshades after 3 months if things don't get better, or corn, or rice, or coffee, or tea, or etc; etc; etc.

Remember to check out the recipe section here for ideas on great gluten-free foods you can make yourself.

Don't smoke crack.

Don't take multi-vitamins or medicines with gluten or wheat grass juice or malt or lecithin or some such hidden poison.

Don't kiss polluted gluten eaters till they brush.

Don't feed pets gluten foods unless you wash your hands every time.

Try some digestive enzymes.

Try an HCL Betaine occasionally, especially if bloating is too much.

Remember Mr. Spock controlled his body with Vulcan mind control discipline. Maybe it really works? Ahhh, maybe not.

Remember if you stick to a whole foods diet you are relieving your body from having to process lots of chemicals, food colorings, preservatives etc. That's a good thing as long as you don't own stock in a chemical factory.

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Well, for starting out on the gluten-free diet:

Glad to see your sense of humor is still intact! laugh.giflaugh.giflaugh.gif

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I made extras of dinner every night for lunch the next day. It was a little boring, but safe.

I drank a good portion of my initial calories in the form of Protien shakes that agreed with me.

Set aside what is "breakfast" food and what is "lunch" food. If it works for breakfast, it can be a good snack at 3:00. Who cares if you microwave an egg.

Simple meals with 1-5 ingredients at a time. If you are living in fear of your food, go safe and boring for a while and spice it up as time goes on.

If you can handle it, keep a jar of peanutbutter in your desk drawer. It is great for when you are getting low on blood sugar.

As time goes on and you start to recover, you will probably discover you are famished and need to eat almost constantly. I kept fruits and fresh veggies along with nuts around non stop.

The advice from the previous poster was good. There are some wonderfully helpful people here.

Best wishes on getting onto a regular meal schedule.

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I'm struggling like crazy. I'm eating way too much junk. Though if it were not for processed gluten free foods, I'd have starved to death.

I personally couldn't agree with the advice to cut out all processed foods, sugary foods etc. It's hard enough gutting out gluten, surely going to that extreme should be taken in steps? I'd honestly be torn between being ill or eating such a diet.

For me, gluten free is enough for now.

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I had to go whole hog, but my dietician has a way that she says encourages success, so maybe that?

Basically, she encourages her celiac patients to start by trying out gluten free dishes while still eating their other foods. So you do the hard work of finding recipes, trying them out, finding products, etc... before you get rid of the gluten.

Then after that, you drop the gluten and eat these foods you've already tried out. That way, you're not trying to do all the difficult work at the same time, but in pieces, so you're more likely to succeed.

She also does this for getting her celiac patients off of dairy and onto organics, just try the new recipes/foods first, then change over.

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I made extras of dinner every night for lunch the next day. It was a little boring, but safe.

I drank a good portion of my initial calories in the form of Protien shakes that agreed with me.

Set aside what is "breakfast" food and what is "lunch" food. If it works for breakfast, it can be a good snack at 3:00. Who cares if you microwave an egg.

Simple meals with 1-5 ingredients at a time. If you are living in fear of your food, go safe and boring for a while and spice it up as time goes on.

If you can handle it, keep a jar of peanutbutter in your desk drawer. It is great for when you are getting low on blood sugar.

As time goes on and you start to recover, you will probably discover you are famished and need to eat almost constantly. I kept fruits and fresh veggies along with nuts around non stop.

The advice from the previous poster was good. There are some wonderfully helpful people here.

Best wishes on getting onto a regular meal schedule.

Those are great bits of advice. I am a complete sugar addict, so cutting that out right away might be a tough goal. Not something I can do right away, at least. I'm having enough trouble eating enough as it is.

I am currently reducing dairy to be safe, but have always been able to tolerate it with a Lactaid pill. My doc didn't seem to think that would change after going gluten-free, except possibly for the better. I find that having some protein from dairy at lunch helps keep me fuller (I already feel famished during the day... fast metabolism... so your advice, SGWhiskers, is helpful! I'm working on using nuts and peanut butter instead of it though.

I'm training to be a therapist and usually have clients right after lunchtime, so I find myself snacking as minimally as possible so I don't have any sort of attack in the middle of a session (my worst fear). Then I'm starving by 4 or 5 when I might finally have a break. I had been drinking Naked juice protein drinks, but wasn't sure if it was upsetting my stomach. What protein drinks would you recommend? I honestly think back to when I had my wisdom teeth and could only have applesauce and Ensure, and I remember feeling really good. Maybe just some Ensure for now is a good idea...

What protein drinks would you recommend

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I drank a good portion of my initial calories

Me too, in the form of scotch to cauterize my gut :lol: :lol:

Seriously, it was the only thing that would stop the bloat. Not that I would recommend anyone else do that :P , but that was my personal solution. Sometimes even now I revert to that when nothing else works. But it has to be neat - no ice, no water, no soda, just burn the heck out of it :blink::unsure::rolleyes:

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Glad to see your sense of humor is still intact! laugh.giflaugh.giflaugh.gif

Ahhh yes, it comes back when I am feeling well and get some sleep. That could be a bad thing... :)

I'm struggling like crazy. I'm eating way too much junk. Though if it were not for processed gluten free foods, I'd have starved to death.

I personally couldn't agree with the advice to cut out all processed foods, sugary foods etc. It's hard enough gutting out gluten, surely going to that extreme should be taken in steps? I'd honestly be torn between being ill or eating such a diet.

For me, gluten free is enough for now.

Hi RealMaverick (Paul),

I agree that the whole foods diet can be a major change for some people. Heck, it was a big change for me. You have to work through things at your own pace of course. I had been a convenience food junkie for years myself. Although I was vegetarian for 5 years at one time. Then my veggie wife found a doctor and took off for the veggie hills. So I went back to eating whatever I wanted and ended up here. I changed to cooking more and more of my meals from scratch and ditched most of the processed foods. I have intolerances to nightshades and soy so there are not many of them I can eat anyway. I had a lot of bloating for a while after going gluten-free, and cutting out sugar helped it. Lots of things helped it really, and it took a while for me to figure out the things to avoid. So, yes, it is a big change, but it does payoff. There are no hard rules about these changes either, you can try them as you wish and for as long or as short a duration as you wish. Probably a 2 week period is enough to see some positive changes if they are going to happen. One thing to watch out for though is that if you are intolerant to multiple other foods then you can think something isn't helping because you are already reacting to something else. Say there are 2000 white cars in a parking lot. It can be hard to find the one that's yours. If there are only 5 white cars in the same parking lot, you can find yours much easier. Same with food intolerances, if you are eating 50 foods/ingredients each week, then how can you tell easily which is causing a problem? That's where simplifying your diet comes into play and can help you identify a food problem. Just food for thought, as they say. We all start somewhere on this diet and learn as we go.

Those are great bits of advice. I am a complete sugar addict, so cutting that out right away might be a tough goal. Not something I can do right away, at least. I'm having enough trouble eating enough as it is.

I am currently reducing dairy to be safe, but have always been able to tolerate it with a Lactaid pill. My doc didn't seem to think that would change after going gluten-free, except possibly for the better. I find that having some protein from dairy at lunch helps keep me fuller (I already feel famished during the day... fast metabolism... so your advice, SGWhiskers, is helpful! I'm working on using nuts and peanut butter instead of it though.

...

I can't help with the protein drinks, I never do them myself. How about a boiled egg instead? Or chicken or beef? Or make some guacamole and have it with veggies? Just some other ideas.

As your gut heals and your villi recover, they may start making lactase enzyme again. Which would help you digest lactose sugar in dairy. Not all people recover that ability though, and there are quite a few adults who can't digest lactose in the general population anyway. There is also casein intolerance to consider. Casein is a protein in dairy, and some people are intolerant to it. There are no good pills for casein intolerance though.

Me too, in the form of scotch to cauterize my gut :lol: :lol:

Seriously, it was the only thing that would stop the bloat. Not that I would recommend anyone else do that :P , but that was my personal solution. Sometimes even now I revert to that when nothing else works. But it has to be neat - no ice, no water, no soda, just burn the heck out of it :blink::unsure::rolleyes:

Ah ha, "The Ravenwood Solution", sounds like a spy thriller! Sounds captivating too. :D

PaulsArt

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I try and get protein and fat at breakfast (in the form of peanut butter on my rice cakes, eggs, cheese, whatever) so that I'm off to a good start.

Lunch is almost always leftovers from the previous night's safe and usually homemade dinner (e.g. last night's was gluten-free pasta salad with canned tuna, canned beans, diced cucumber and garlic-red wine vinaigrette). When I was first gluten-free and suffering from months (years, probably) of nutrient malabsorption, I was craving things like avocados for the fat and vitamins so I would often bring a whole avocado in my lunch and slice it up on my food (in fact I did this today since it went well with the tuna-pasta salad). I always make sure I bring a yogurt and piece of fruit or a Kind or Lara bar for an afternoon snack. If you're limiting dairy, So Delicious makes a good coconut milk yogurt. I ate that and soy yogurt for the first couple of months until my gut could handle dairy again.

I like to have a cup of herbal tea in the afternoon and find that ginger or peppermint tea help settle my stomach. I'm currently addicted to Tazo's Spicy Organic Ginger and Refresh (mint) blends.

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No great words here as I am still struggling just a couple of things that have helped me. I always have a Muscle Milk with me for emergencies. It is a high protein drink that is pretty easy to find in the stores & is marked gluten-free. Also I make up a weekly menu for all meals & snacks. It seems to help having a paper tell me what to eat rather than being hungry and not beoing able to think of anything to have. Even if I can't eat all of the food items (quantity is still a big problem) at least I have a start on eating the right stuff.

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Like previous posters (great advice everybody) I have a problem with breakfast but find that if I make myself eat something decent in the morning, I have fuel for a better day. Drizzle or spritz a glass bowl with olive oil, whip a cracked egg or two with water or alternative milk of your choice, and s & p & microwave for a minute. Meanwhile cut up a piece of fruit, and safe peanut butter if desired.

I pack a lunch 365 days a year, and pack one if going to a party. Check the camping sections at discount stores for one with a washable, removable insert. You can search the forum for excellent snack and/or lunch ideas. I have a huge container of protein shake that I purchased and is supposed to be gluten-free/Soy Free/ Dairy Free, but haven't tried it yet because I'm chicken about trying something processed. Lifetime Life Basics. Hope that helps...I researched quite awhile before buying it.

Real food is starting to taste so much more delicious. Whole cashews might be a good snack for you ... I haven't had a problem with Planters Whole Cashews, and they're delicious.

Now that I'm finally on an even keel, I'm ok with having to prepare every meal myself or with someone I trust. I feel like my cup isn't turned upside down, it isn't half empty or half full, I feel like I've come to terms with my cup, and don't want to upset it, so I stick with whole foods and experiment with new dishes and cuisines that involve trusted ingredients.

My experience was that at first this was overwhelming, going to a grocery store was a hideous experience, but became better. Now I can breeze through a grocery store, because I make a weekly trip to the meat market and vegetable stand, so I don't need much at the grocery.

So.. I started getting better and feeling hope, then started developing/or finding more food/additive intolerances. Then I started getting angry about it. I think that's normal. Tonight we had grilled salmon marinated in tangerine juice and crushed (almost rotten) strawberries with EVO and S&P. The salmon was the best I ever had. My DBF asked me to write down the recipe because it was so good. You're in a discovery period. I hope that you discover that it all becomes second nature and you discover a better world. You know the old cliche'... a door closes and a window opens.

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You don't have to take out the processed foods forever, just try 3 or four weeks without to help heal and get a baseline "wellness" before you add anything processed. Turns out, every gluten free bread I've tried (all three of them) give me mild stomach aches. Maybe yeast...? Not something I would know if I had been eating it all along. It definitely reduces variables and lets you control what you are eating. Make up a few pots of food and freeze portions for a couple of weeks if you don't have time to cook more often. Eating away from home is something that I would avoid if I were to do the first two months over again. (I do now, but it would have been better to avoid it then.)

Going low fiber (meat over beans; white rice over brown; no fruit or veg skins; etc) can help a bit temporarily but it's a short term solution to situations like travel. Early on, sometimes it's easier on your system to eat only cooked fruits and vegetables. Again, if you still have issues, try cutting out the dairy completely. It's another variable, and fewer stressful variables may help. Buy some flowers. Pet the cat. Take a walk (near toilet facilities ;-) ).

In terms of weight, make sure you're getting enough fat and starch. Olive oil, nuts, avocado, etc. Rice, potatoes, corn, etc. Protein drinks are okay (except for their inherent "eww" factor), but real food is better if you can pull it off. I'm still not totally stabilized months out, so just understand that it may take a little time. I was crazy hungry for maybe the first three weeks, so eating enough was not a problem. Good luck...!

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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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