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My Celiac Life Story.
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9 posts in this topic

Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

Well, somebody asked if I had made a thread with my own story and I hadn't, so figured I would go ahead and start one. I've been doing a ton of research on this site for the past week or two, and it has been so extremely helpful to me. Self diagnosing here, but I believe I have celiac disease. I've never noticed major problems with eating anything gluten before, so it is a pretty big surprise to me, but it makes sense that the stress of my wedding and being drug all over Disney World is the reason that my symptoms were exacerbated.

"Experts think that surgery, pregnancy, childbirth, a viral infection or severe emotional stress may trigger the beginning of the disease in people who are genetically prone to it."

As of this post I am 22 years old, 5'5, and 160 lbs (about 30 lbs more than normal). Let's begin with a list of symptoms I have that I believe tie into celiac.

Bloating / Gas, Diarrhea

Constipation

Fatigue

Itchy Skin Rash

Tingling/Numbness

Mouth Sores

Joint Pain

Delayed Growth

Poor Weight Gain

Thin Bones

Infertility (have not been tested, but am pretty darn sure)

Headaches

Depression

Irritability

Discolored Teeth

Anxiety

Short Stature

and Brain Fog

-- I am sure I am missing some things.

At first I thought maybe I was making a big deal out of nothing, surely I don't have celiac, I mean I've eaten gluten my whole life, and surely most of that list can be caused by other things as well......

Then it kept getting worse.

The first thing I remember noticing that made me do research and landed me here because it was abnormal to me was numbness/tingling in one of my hands. As we were driving to Florida I noticed this and it kind of freaked me out a little bit. Then, almost the whole week (my entire honeymoon) I was extremely tired, cranky, and hurt just about all over. The back of my foot, and my wrist were both hurting really bad most of the trip. I had the numbness/tingling in my leg. I was having all kinds of problems every time I ate. I wouldn't be able to finish my meal because I would immediately bloat, lose my appetite, and have to go to the bathroom where I would stay for 30 minutes or so. I thought it had to be the food, but my wife wasn't having any issues at all and we were eating the same things. Then my buddy convinced me I probably just had traveler's stomach or something like that. I'll just add in that I am pretty short, 5'5. I have gained about 20-30 lbs over the past month or two putting me at 160lb - which is pretty strange since I have been pretty skinny my whole life, actually I have always been pretty malnourished and we always thought it was just my metabolism. I usually weigh 120-130. Obesity runs pretty strong in my immediate family as well, so it was even more odd I thought, that I was skinny regardless of what I ate.

Then it got to the point where I wouldn't be able to sleep at night because I would be in so much stomach pain while it "rumbled" away. I would run myself a bath just to try and make it bearable. The morning before we left Disney (shortly after I realized something was very wrong) I decided to have a gluten free breakfast at the same place we ate 90% of the time, just to see what happened. Nothing, no pain at all. I thought, okay, my brain is messing with me now, the bug must be gone or something. At this point I decided I was just going to tough it out so that I could test for celiac. So on the way home we stopped at a chicken place, and I got two chicken legs and a biscuit. Well, needless to say, I didn't make it to the biscuit thankfully. This time it really got me good -- My stomach felt HORRIBLE. I was trying to lay down in the car and take my mind off of it, but it was just too much. I became very nauseous to the point of having my wife pull over and get me pepto bismal. I felt like a little kid when she told me the cashier asked if her little one's tummy hurt (we don't have kids yet for the record). She said "no, my husband, the big one's tummy hurts." lol. Here I am having just got married, and my wife has to go into the store and get me bismal tablets because my tummy hurt... and I couldn't open my eyes while she drove without feeling the need to hurl. I have also noticed that anything dairy has really been messing with me as well, which is also new for me.

So I decided at this point I didn't really have the money for testing to begin with and no health insurance. I thought maybe I had something besides celiac because I get reactions so quickly, but then found on the net that celiacs actually have faster reactions to gluten than intolerant people. So instead of waiting around in pain every time I ate for it to stop, I chose to go Gluten Free. Honestly by the third or fourth day I noticed my back pain was completely gone, i felt confident with way less anxiety than normal, and my face is really clearing up a lot. I am usually broken out all around my mouth and neck and only have maybe 1-2 spots right now that are left and are clearing up. I felt motivated for work, had a rush of energy and cleaned the entire house haha.

Then something happened.... I overlooked a label on some cheddar popcorn (my subconscious (AKA the devil) was telling me "ehh.. you don't have celiac.. you just had a bad run at disney, i'm sure you are better now") that looked fine and dandy except for "Made on a line with wheat and peanut products"- which I went back and found after I spent about an hour in the bathroom at work with my stomach in a vice grip. I have felt brain fog, weak, and tired since, but this was only 2 days ago. I can't wait to see how I feel in a few weeks, or months.

I also think celiac is the reason I did so terrible in school after 4th grade or so and dropped out in the 9th grade. I would be so tired every day and miss the bus or have my parents call because I didn't ever feel energetic enough to do anything there. Then I joined the navy, which lasted a year. My symptoms became much worse in boot camp when I first got there. I had major depression almost the entire time I was on active duty (about 1 year). I had never noticed too much of anxiety problems before, but during/after boot camp I have had nothing but problems with it. So that's why I got discharged, because I was suicidal and more or less crazy by a years time.

Anyway, I am pretty sure I have celiac and don't need a test to tell me so. Obviously eating gluten free is good for me, so whether I have it or not I am not going to pay a doctor to tell me to keep dieting. Everyone out there that doesn't have problems is going to be skeptical, because they can't feel it for themselves. They can call me a hypochondriac or whatever they want, but all I know is gluten free keeps me from hurting. I can only associate gluten products with pain now, and it grosses me out. Just eating that popcorn has made me feel disgusting since, like I ate dirt or something.

I really wanted to say I have a new respect for all celiacs. I never even heard of this before and I now know what pain you go through not only physically, but mentally when you eat gluten. From people's ignorance at restaurants "what do you mean you don't want a bun??", to some doctor's ignorance at hospitals as I have seen a lot of on here. We can't forget the skeptical family and friends that think we are all just complainers.

I will keep you all updated as I continue to eat gluten and dairy free. Thanks for dropping by my thread and I appreciate any kind words in advance.

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Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

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Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

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Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

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Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

Thanks for your kind words. I am definitely committing to the diet, when I think of gluten foods I think of the pain that accompanies them now - which makes it pretty easy to steer clear of. That one little mishap with the popcorn was enough for me to say, "ok - all done". lol. I've decided eating out is pretty much impossible unless I go to PF Changs. Thanks again for the reply!

Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

Haha yes, sorry I missed that one.

Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

Good points. I definitely can't afford 10 years of misdiagnosing :P Very glad to hear that the lactose intolerance goes away, I looove dairy :D I've talked to my family about it, but nobody thinks they have it (of course). Some of them have arthritis, and some diabetes.

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Thanks for your kind words. I am definitely committing to the diet, when I think of gluten foods I think of the pain that accompanies them now - which makes it pretty easy to steer clear of. That one little mishap with the popcorn was enough for me to say, "ok - all done". lol. I've decided eating out is pretty much impossible unless I go to PF Changs. Thanks again for the reply!

Haha yes, sorry I missed that one.

Good points. I definitely can't afford 10 years of misdiagnosing :P Very glad to hear that the lactose intolerance goes away, I looove dairy :D I've talked to my family about it, but nobody thinks they have it (of course). Some of them have arthritis, and some diabetes.

Family members, who may have celiac or gluten intolerance are usually in denial. Little piece of advise here. If they haven't personally seen you suffer and experience your newly found change, you may want to "feed" them your celiac knowledge in small pieces, because they tend to shut you out, if it's too much at a time.

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With all due respect, I think that anybody who tries to self-diagnos a medical condition is playing with fire. What if all those problems arent from gluton but from cancer? If you have any ability to see a doctor about those problems I think you should. If I had self-diagnosed myself two years ago,I would not be here today. I'm just saying, or perhaps begging you, to see a doctor. Because , what if your self-diagnosis is wrong?? Some things to think about..........

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With all due respect, I think that anybody who tries to self-diagnos a medical condition is playing with fire. What if all those problems arent from gluton but from cancer? If you have any ability to see a doctor about those problems I think you should. If I had self-diagnosed myself two years ago,I would not be here today. I'm just saying, or perhaps begging you, to see a doctor. Because , what if your self-diagnosis is wrong?? Some things to think about..........

I really can't afford to go see the doctor at this point in my life. I appreciate your concern, but doesn't it matter that I don't have the symptoms when I eat gluten free? Then when I do eat gluten I get them again...? When I am not eating gluten I feel fine, no issues that make me raise an eyebrow at all.

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If your symptoms go away when you are gluten-free, and come back when you eat gluten, then I would feel safe saying it isn't cancer!

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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