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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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At My Wits End...

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Hi everyone,

I woke up this morning with a terrible stomachache and wanted to cry. I still want to cry. I just don't know anymore what is going on. I was given a diagnosis of celiac after a positive blood test and positive biopsy a few days ago. I have been on a gluten free diet for about 2 weeks.

I just don't know if this is the answer for my troubles. I have extremely high & chronic anxiety that takes over my whole life and it is hard to see clearly what is going on. I hope with all my might that the reason I feel this way is the celiac, and not some other horrible disease, tumor, or psychological problem. If I look back and analyze the last few years I start to wonder when it all started. I remember 2 years ago I spilled hot oil onto my hand and the burn mark took more than a year to heal completely. 18 months ago I started having tingling/numb hands, which I went to PT for and helped a little. about a year ago I fell into a major depression and have been unable to get out of it. I have done everything in my power to fight my depression. I am seeing a therapist, on antidepressants, and have been working on all the social and relationship issues I can possibly think of, and yet I still wake up with symptoms of anxiety that I can say are similar to the celiac symptoms. nausea, aches, gas, flatulance, etc.

I am just so scared and overwhelmed. I am putting myself through hell and right now I can't tell if anything is making a difference. I don't know how to find all the hidden gluten. Have I been missing some all along and my diet has done nothing to help me heal? How can I find the willpower to focus on my diet? What if I dont improve? Can anyone else relate to my experience and let me know it will be ok? I just need some guidance as I dont really have much contact with the doctors who have diagnosed me.

Just feeling blue...

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Aw hon, you are going to be ok. Really. It takes time...and 2 weeks gluten-free is not long enough to see results for a lot of us. Besides, you could be in the midst of gluten withdrawal which is no picnic. That does pass.

If I get glutened I have overwhelming anxiety plus some depression. It is as if I am in a bottomless pit with no hope of getting out. But that feeling clears up after a couple of days for me at this point (I'm almost 9 months gluten-free.)

When you are newly diagnosed it is overwhelming and scary, and I swear I thought EVERYTHING had gluten in it. I was a mess physically and emotionally plus completely overwhelmed by the diagnosis even though I was really really happy to finally have a diagnosis after being so sick with doctors who were telling me it was "all in my head"! There is a steep learning curve with the diet, cleaning out the kitchen, shopping, medicines, etc. It does get easier and better.

Check out the post, Newbie Info 101, in this forum by IrishHeart; it is pinned at the top of the forum. It has invaluable information.

And know that you can come here at any time vent and get support.

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First, huge huge hugs. I can totally relate.

Second, two weeks is a DROP in the bucket of time. These things take a long time to heal.Myself, I was diagnosed by a fluke by a neurologist when I had TERRIBLE pain in my nerves. I thought I was going to end up in a wheelchair. My feet could NOT touch the bed when I slept, the pain was so bad. It took a long time to feel better. I was also VERY depressed and had huge anxiety. All of these neurological manifestations can take a while to heal. I can tell you that the nerve pain is MUCH better and manageable and I am off the antidepressants. I am probably healthier in many ways than I have ever been.

I too have no contact with the Dr's, no followup. The GI dr said "Stop eating gluten and you should feel better in a few days". Well, that was crap. Everyone heals at a different rate.

I bet that the Celiac is making you so, so depressed and anxious. The one piece of advice I have is to be very, very gentle with yourself. Take it one day at a time. Eat whole, unprocessed food that will will limit potential cross contamination. If you haven't done so, give up dairy until your intestines have a chance to heal.

If you don't feel well, don't push yourself. You WILL get there.

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Why has my reaction to gluten gotten so much more severe now that I have tried to stop eating it? I mean it was only a few days ago I was eating a ton of bread, pasta, and beer. and now it seems like i may be having strong reactions to it, like i have one thing the night before and i feel like utter garbage for the whole day afterwards. How come that didnt happen before?

Thank you guys for the support. I remember the way I used to be and I want so badly to get back to that way of life. It has been such a downward spiral and I (wrongly) attributed it mostly to psychological weakness, that I was losing control, going crazy, or there was something wrong with me. I just still have a lot of doubt that it is celiac and that I will get better. I know it is irrational. I know that I have a real diagnosis but I still don't quite believe it.

I wish I could take a month off and go to something like a recovery center or something. Life is so difficult to manage even without a disease. I just want the panic attacks and anxiety to subside.

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When we go gluten free our antibody levels start to drop. When we ingest even the tiniest amount of gluten it causes the antibodies to flare and the symptoms sometimes are more severe than before we were diagnosed. It is your bodies way of trying to keep you from eating any more gluten.

It sounds like you have some neuro problems associated with gluten. That is not unusual. For me the depression went away gluten free and only returns when I get glutened. That helps me to cope. The knowing that it is the gluten doing it. In my case being gluten free did nothing for the anxiety but for others that resolves also. It does take time though.

Some of us will also go through withdrawl which while it is not pleasant will resolve once we have been gluten free strictly for a while. In my case the withdrawl lasted about 2 weeks. If you 'cheat' on the diet it will continue to feed the withdrawl and it will take longer to feel better so do not cheat and do take all the precautions you need to keep you safe.

Hang in there. It will get better. Honest. Ask any questions you need to and do read the Celiac 101 info.

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Relax. You sound very normal. For a Celiac anyway. While a few people get relief within days, for most it takes months, and for a few unfortunate ones, years, to heal. Reacting stronger now than you did just a few weeks ago is very normal as well, and it is actually a good sign. Your body is fighting back now- important step in healing. The next few months will probably be rough, a lot of setbacks. Again-normal. But most likely, 6 or 7 months from now, you will realize you are feeling better...and it just keeps getting better! You didn't fall apart overnight, and you won't heal overnight either. Depression and anxiety go hand in hand with gluten, and you will discover an occasional accidental glutening can make it worse for several weeks. Give yourself permission to feel lousy for awhile. You are doing all the right things! Continue with your meds and therapy for now (but make sure meds are gluten-free!) Chances are good that you won't need them forever!

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Relax. You sound very normal. For a Celiac anyway. While a few people get relief within days, for most it takes months, and for a few unfortunate ones, years, to heal. Reacting stronger now than you did just a few weeks ago is very normal as well, and it is actually a good sign. Your body is fighting back now- important step in healing. The next few months will probably be rough, a lot of setbacks. Again-normal. But most likely, 6 or 7 months from now, you will realize you are feeling better...and it just keeps getting better! You didn't fall apart overnight, and you won't heal overnight either. Depression and anxiety go hand in hand with gluten, and you will discover an occasional accidental glutening can make it worse for several weeks. Give yourself permission to feel lousy for awhile. You are doing all the right things! Continue with your meds and therapy for now (but make sure meds are gluten-free!) Chances are good that you won't need them forever!

Thank you mitzi, that is what I needed to hear. I just have such high standards for myself that when I feel unable to cope it makes me feel even worse. Like i am letting myself and others down by not being 100%. I need to allow myself to feel bad and be selfish so that I can get better in the long run. It's hard to be realistic in the middle of the worst feelings i have ever had in my life.

will keep my head up and perservere,

justin

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I'm sorry you are feeling so stressed. before diagnosis my anxiety ran pretty high. my doctors kept trying to give me antidepressants and anxiety meds. when I went gluten-free last august I was more focused on my gi issues so I didn't pay attn to my anxiety level. but I do notice the difference now. I don't jump out of bed @ full steam with my mind racing, worrying. I am much more relaxed and confident in my personal and professional life. A fw ppl have even noticed and commented on it. I think it might be one of the slower resolving issues that resolves with being gluten-free. just stay viligant about being gluten-free(lots of great advice all around this forum) and give your body time to heal, you'll get there.

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Hi everyone,

I woke up this morning with a terrible stomachache and wanted to cry. I still want to cry. I just don't know anymore what is going on. I was given a diagnosis of celiac after a positive blood test and positive biopsy a few days ago. I have been on a gluten free diet for about 2 weeks.

I just don't know if this is the answer for my troubles. I have extremely high & chronic anxiety that takes over my whole life and it is hard to see clearly what is going on. I hope with all my might that the reason I feel this way is the celiac, and not some other horrible disease, tumor, or psychological problem. If I look back and analyze the last few years I start to wonder when it all started. I remember 2 years ago I spilled hot oil onto my hand and the burn mark took more than a year to heal completely. 18 months ago I started having tingling/numb hands, which I went to PT for and helped a little. about a year ago I fell into a major depression and have been unable to get out of it. I have done everything in my power to fight my depression. I am seeing a therapist, on antidepressants, and have been working on all the social and relationship issues I can possibly think of, and yet I still wake up with symptoms of anxiety that I can say are similar to the celiac symptoms. nausea, aches, gas, flatulance, etc.

I am just so scared and overwhelmed. I am putting myself through hell and right now I can't tell if anything is making a difference. I don't know how to find all the hidden gluten. Have I been missing some all along and my diet has done nothing to help me heal? How can I find the willpower to focus on my diet? What if I dont improve? Can anyone else relate to my experience and let me know it will be ok? I just need some guidance as I dont really have much contact with the doctors who have diagnosed me.

Just feeling blue...

Have you been checked out for other issues? Diabetes and thyroid can cause delayed wound healing.

However, as so many others have said, your body is going through a LOT as it heals from old damage and adjusts to your new diet. You probably were ill for quite some time, and it will take time to heal! Hang in there, and hang out here! This is such a lovely bunch of supportive people who have experienced many trials in healing! {{hugs!}}

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Thanks everyone. I have an appointment with a dietitian on friday. I wrote this post last thursday after feeling like I took a major step backwards. Things improved a whole bunch on friday and I felt good. It just shows that it is quite an up and down thing while my body heals. All I can link it to was a glass of whisky i had the night before. I have read that distilled spirits do not contain gluten, however that was the second time I had a glass and the next day felt bad. just going to have to stay away until I am healed and then I can slowly test it.

I have decided to really own this condition and do what I have to do, such as really pay attention to the food I eat, and not only that, change the way I think about food. Its a new day. My psychological issues seem to be getting a bit better too. I cant wait to see how I feel in 6 months!

Thanks for the support. I am sure there will be more times when I feel bad and will call on it again.

Justin

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Justin, if you are early in the healing process, your damaged gut could react to just about anything. Do not assume that anything necessarily has gluten just because you have a bad time after consuming it.

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Thanks everyone. I have an appointment with a dietitian on friday. I wrote this post last thursday after feeling like I took a major step backwards. Things improved a whole bunch on friday and I felt good. It just shows that it is quite an up and down thing while my body heals. All I can link it to was a glass of whisky i had the night before. I have read that distilled spirits do not contain gluten, however that was the second time I had a glass and the next day felt bad. just going to have to stay away until I am healed and then I can slowly test it.

I have decided to really own this condition and do what I have to do, such as really pay attention to the food I eat, and not only that, change the way I think about food. Its a new day. My psychological issues seem to be getting a bit better too. I cant wait to see how I feel in 6 months!

Thanks for the support. I am sure there will be more times when I feel bad and will call on it again.

Justin

Quite a few of us react differently/badly to alcohol once off gluten. I won't bore you with my wine tasting story - but lets just say its been 6 months and I still threaten to gut hubs of he drinks montepulciano in my presence.

It does get better.

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I went to a nutritionist and it really was the best thing I could have done. I felt so bad for years. I'm not a celiac but I am gluten sensitive, along with diary and many other items. The saying, you are what you eat, really hits home once you get tested. The hardest part in the early stages is actually believing these major changes (including many supplements for me) are worth it. Realistically, you just don't know. You have to live it. In order to do that you have to be patient with yourself and let time pass. It took me two months of a very strict diet before I noticed any change which was pretty discouraging but I put my faith in my Doctor of Nutrition (clearly she know more than I do). She is my best resource now. Once my symptoms really started to deminish (but still there) and my energy started coming back, it really felt like a meracle. It's been almost eight months now and I still feel like I am in a recovery stage but a great stage. I feel happy and energized now but it's still a real commitment. I hope some day to cut back on the supplements since there are so many and expensive but worth it for now. I believe I am actually getting my nutrients now more than I have in years. When I was first told to do the diet change, I gave myself a break instead of powering through the day. Raising two kids on my own and dealing with such a different life style is tough. They didn't want to change (nor should they have to) but when I was tired, I just told them I needed to rest instead of not letting them know I was exhausted. I know longer felt guilty when I felt weak and gave my body more rest to help itself recover. Be patient with yourself and don't expect to feel better over night. Be sure your Doctor has run a blood test on most routine type items. It's amazing they don't do a routine panel anymore. My hypothyrodism would have been discovered years before also.

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Hi guys, its been about a month since I posted this topic. My experience since than has been a lot of ups and downs. Today is a bad day and I needed to share. I have had many good days this last month and have been trying really hard to watch my food. I have found that dairy is really bad for me right now, but have caved in a few times and had some ice cream or milk in coffee.

I get so discouraged when I have a bad day, and I forget how good I have felt on the good days. in fact just yesterday was a great day. Had a confidence breakthrough at work. Woke up this morning feeling terrible and have been depressed the whole day. I just feel sometimes like I am broken. Like this will never get better. for 2 years now I have associated bad thoughts with ill feelings and it is so easy to continue that behavior. The brain-gut connection is so strong and i feel like i am at its mercy. if i have a stomachache, it must mean that whatever negative thought is in my head must be true. Do other people feel that way?

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Hi guys, its been about a month since I posted this topic. My experience since than has been a lot of ups and downs. Today is a bad day and I needed to share. I have had many good days this last month and have been trying really hard to watch my food. I have found that dairy is really bad for me right now, but have caved in a few times and had some ice cream or milk in coffee.

I get so discouraged when I have a bad day, and I forget how good I have felt on the good days. in fact just yesterday was a great day. Had a confidence breakthrough at work. Woke up this morning feeling terrible and have been depressed the whole day. I just feel sometimes like I am broken. Like this will never get better. for 2 years now I have associated bad thoughts with ill feelings and it is so easy to continue that behavior. The brain-gut connection is so strong and i feel like i am at its mercy. if i have a stomachache, it must mean that whatever negative thought is in my head must be true. Do other people feel that way?

I feel what you're going through - ironically I'm a mental health therapist 9am-5pm and now a Celiac 24/7...yes, the brain/gut connection is VERY strong and many people with anxiety report physical symptoms, specifically GI type things. Its easy to make the connection and get confused. Speaking for myself, through the whole withdrawal process I was experiencing some anxiety and mild depression symptoms and I decided to focus my energy on a positive thing. I've been going to the gym 4 days a week to exercise and hopefully work off the weight that the Celiac put on me over the past couple of years. So far I've lost 7 pounds - I feel great now and can focus my anxiety and energy in a positive way. Is there anything like that you can get involved in?

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I used to play volleyball and would love to get back to that. i tore my ACL 2 months ago so unfortunately I can't be very active. I just need to keep telling myself that this is a disease with very powerful symptoms. I have to disconnect the ill feelings with the negative thoughts. I have to accept that this disease has caused a lot of pain and will take a long time to heal, but I will heal. I have to give myself space and allow myself to feel sick. For too long I have turned it around in this way: 1. I feel sick, 2. well there is no reason to have a stomachache, 3. do i feel sick because there is something wrong with my life? 4. Well lets look at all the things that could be wrong, 5. hmm, maybe my job, maybe my life, etc. etc. you get the point, until I reach the lowest, scariest thoughts and have a panic attack.

Being a mental health specialist I am sure you understand these mind games.

I still feel nausea this morning but am in better spirits. I think I can get through the day without a panic because I know I must have gotten glutened on friday and am still dealing with it. Thanks for listening!

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When you are healing, you feel lousy so often that it is very difficult to tell whether you got glutened, imagined you got glutened, or are reacting to something else altogether. We have all been there! It sometimes seems like this is going to be your life now, waiting for the "next time" this happens.

Don't worry. It won't be your life. But it will probably be your life for at least another 6 months or so. Your best bet is to ditch ALL processed foods (even gluten-free ones) and dairy, for now. Don't eat out either. Hard, I know, but the risk of cross contamination is so great, and the effects of gluten, or even difficult to digest foods, like dairy or soy, are going to wreak havoc on your gut. Think of it as if you just had a bad case of the stomach flu. Remember how you would ease back into eating "real" food- the first day or two you stuck to really bland, easy to digest stuff?

Well, that is how your gut feels right now. It has been ravaged. It is so sore and wounded, and when you ask it to digest something difficult or harsh, like dairy or alcohol or fried stuff...chances are you are going to feel it!

And yes, the gut-brain connection is HUGE. If your guts are messed up, your mind very well might be too.

But it gets better, I promise! Just stick to wonderful whole foods for now that your mind and body will both benefit from. Make sure you are getting adequate nutrition, take supplements if you need them. And rest. Relax! You have the rest of your life to feel better, and you will!

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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