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torimuse

Is It All In My Head?

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Like any new person to this forum, I'm going to take the time to make this post to get the reassurance that I'm craving to make sure I'm not going crazy, having 'female problems', or making it all up. I apologize now for the long post.

For most of my life, I've been able to eat what I want, when I want, and not have to worry about it. A little over 2 years ago I began working at Panera Bread Company. Less than 6 months later I had a massive kidney infection. Fever of 102*F, massive abdominal and back pain, the works. The abdominal pain to this day still hasn't gone away.

Within weeks of this infection, my store introduced its "Power Breakfast Sandwich" on Whole Grain bread. All store employees were required to try it so they could tell customers how good it is. Within a half hour of trying it with my bowl of steel-cut oats, I felt the need to vomit. Didn't happen, but the nausea stayed with me for the rest of the day.

As the abdominal pan continued, and worsened considerably during my periods, I went to the illness doctor at my clinic. He diagnosed IBS and told me to eat more fiber. Tried Black Bean Soup with a Whole Grain baguette for more fiber, same reaction as the sandwich. Stopped eating whole grain bread entirely. (Never liked it anyway) Upon seeing my General Doc for a follow-up, she said I didn't have IBS and switched my Birth Control, thinking it was a problem with how the lining of my uterus was being built each month. Abdominal pain stayed, but wasn't excruciating during my periods anymore, so I thought nothing of it.

Nausea came and went. Many pregnancy tests were taken, none positive. Constipation ruled my life. Foods that I used to love (like Mom's sausage and biscuit balls) left me sick for weeks, yet I was the only one affected. Fiber supplements failed, so I gave up on them. I started forgetting how long it'd been since my last bowel movement.

Then I tried wheat beer, at a friend's suggestion. BAD IDEA. Within hours I was gassy, nauseous (after only 1 sip, couldn't have been alcohol nausea), bloated, the works. No diarrhea, though. Looked up wheat allergies online and found information about Celiac's. I tried a gluten free diet for a week and was AMAZED. I had normal bowel movements again, and they didnt' hurt! The last day being gluten free, I even had 2 in one day, and I was so excited I did a happy dance. I was going to the doctor a week later, so I decided to re-introduce glutens in case she wanted to test me. My next bowel movements were 2 days apart, then 3, and then I finally got around to seeing my doctor.

After telling her my symptoms, she said that I wasn't losing weight, and that I didn't have diarrhea, so it was very unlikely that I have Celiac's, so she wouldn't test me. She said I had all the classic symptoms of IBS, and that my normal bowel movements two weeks before were probably due to the gluten-free diet being healthier than a normal poor-person's diet, though she couldn't explain why it came back the very first day after I went off the gluten free diet, when I would only have, say, 4 pizza rolls, or 3 cookies, and the rest was gluten-free. (This was last Tuesday.)

I'm going back to a gluten-free diet, since I absolutely hate being sick. I move across states in a month, so I'm thinking of finding a doctor out there, scheduling an appointment for testing a month in advance, and eating something like 4 slices of bread a day for the month before I get the test. Am I doing the right thing? Could I truly possibly have Celiac's, or am I falling into an internet-reader's hypochondriac mindset?


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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Hi, the symptoms you describe are very similar to mine and many on this board. That doctor you talked to is either not very familiar with celiac's disease or is working off very out-dated information. You can have EITHER weight gain or weight loss and EITHER diareaha or Constipation with Celiac's disease (some people even have both C & D). Some uninformed people think only really skinny people can have it because of the malnourishment that accompanies it, but guess what? You can be fat and very malnourished as well. I think you should definitely find a new doctor to try to test you when you get to your new location. Check the doctors' board here and look for one that actually knows a little about celiac's disease. Just keep in mind you will have to keep eating gluten until your tests are done. So get those tests done ASAP when you move. Also, even if you get negative test results there is nothing wrong with deciding to go gluten free just because you feel better that way. I could not find a doctor to test me and I tried the diet before finding this board so I didn't know how hard it would be to go back to eating gluten for the testing. I'm not going to put myself through the pain so I'm remaining self diagnosed and gluten free. But I tell everyone here to get the tests done before doing the diet because I really wish I had.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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Hi,

Through this process, keep in mind that you can be non-celiac gluten-intolerant . . . so don't rule out a gluten free diet just because tests come back negative. If you feel better, I believe that's all you need!

Hope you continue on your path of wellness.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Gluten sensitivity/celiac can be triggered by the immune system activity that comes with a severe illness. If you feel that much better after going off gluten, you already know the answer. You health problems could absolutely be caused by gluten sensitivity and going onto a gluten-free diet is the right thing to do. Frankly, your doctor is giving terrible advice.

As far as gluten challenge and tests, it's good to be tested, but not absolutely necessary. You have to decide if deliberately making yourself ill right after the stress of a cross-state move is a wise decision. Be aware that even if you have celiac, the blood tests are not that reliable and you may come up with no diagnosis.

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Just last week, I think! I was tested negative for celiac, but I can eat no gluten and that's a fact.

And, no, it's not all in your head and I hate that it makes so many people feel like that.


Be kind to each person that you meet, for everyone is fighting a great battle

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I have DEEP seated anger at the ignorance of doctors on the not losing weight point. I was talked out of testing for celiac 7 years ago because I was having trouble losing weight. The idiot, stupid, moron, poor excuse for a doctor let alone human being who treated me said "ALL" celiacs are underweight.

Nothing could be further from the truth. There are celiacs who fail to thrive and become grossly underweight. There are celiacs who are normal weight and it manifests in other ways. There are celiacs like me, whose metabolism slows way down and whose appetite goes way up to overcompensate for intestinal damage.

If you do a search on this forum about celiacs and overweight you will find plenty of stories like mine.

When I finally ended up in the ER with my 5th attack where I thought I was going to die, this one being the most severe of all the ER doc was knowlegable and had me tested. My blood levels were through the roof.

Going gluten free has been LIFE changing for me. Even my personality has changed for the better. I'm calmer now, no anxiety, more patient. I had sinus infections every 2 months for years and years. Constant allergy symptoms even though nearly all my allergy tests came up negative. Constant antibiotics for years. I haven't had a sinus infection in 7 months. No allergy symptoms anymore. My tummy issues are nearly all resolved but not completely yet.

Please print my story and take it to your doctor. Get other people's stories on here and educate her.

My son's pediatrician is very knowledgable about celiac and she said it's a common misconception that they are trying to debunk but so many docs learned it years ago and haven't gotten the latest info.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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Thanks, guys. You are so awesome. Thank you for all your kind words and advice. I think it really helps to have people in my same position to talk to. I've only been considering Celiac's and Gluten Intolerance for a month now, and it's still a very terrifying prospect.

What are the pros and cons to actually getting the testing done? I know my one big worry is that when I have kids it might be that much harder to get them screened without a diagnosis for myself, since it "supposedly" doesn't run in the family. I'm also kind of there with GlutenFreeManna because after just one week of eating gluten again (which was after only one week of being gluten-free) I found that I had started not liking the taste of things I used to love (like ramen) or that they made me sick even faster. (cookies, pizza rolls, etc.)

My other question has been how long does it take on gluten before your small intestine is damaged enough to cause you to be malnourished? My above-mentioned friend said her mother-in-law was thin as a rake and almost deathly before she was diagnosed, and is using that to tell me that I have IBS. (though she says that she's done a lot of research on this on my behalf...but I'm guessing she hasn't found this forum, or 20 other websites that list constipation as a symptom.) Sorry, just ranting there, a bit.

I'm very sure that my kidney infection back in Nov 08 was what triggered this, and I really don't think a year and a half is enough time to destroy the small intestine enough for me to look like that. I stopped eating back in 06 almost completely from Depression, and it still took me about a year to start looking sick. This time I also started out with more meat on my bones than back then just because I tend to overeat slightly to make sure I'm not undereating. My logic is sound, right?


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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Like any new person to this forum, I'm going to take the time to make this post to get the reassurance that I'm craving to make sure I'm not going crazy, having 'female problems', or making it all up. I apologize now for the long post.

You're not crazy! :)

For most of my life, I've been able to eat what I want, when I want, and not have to worry about it.

Prior history of being able to eat anything - check.

Less than 6 months later I had a massive kidney infection. Fever of 102*F, massive abdominal and back pain, the works. The abdominal pain to this day still hasn't gone away.

Sudden onset of GIT issues after a nasty infection - check.

He diagnosed IBS and told me to eat more fiber.

Completely clueless doctor diagnosing IBS without eliminating every possibility, and then prescribing fiber - check.

Many pregnancy tests were taken, none positive.

Haha, check. Twice! Why do doctors not believe us when we say we don't have morning sickness?

I tried a gluten free diet for a week and was AMAZED. I had normal bowel movements again, and they didnt' hurt!

Check and check. My movements also normalised from alternating d and const within a week. Accidently eating gluten made me ill within a day. I'm still not hundred percent sure it's celiac - have only been on this for a week now, but definately going to continue and see if symptoms are consistently better gluten-free.

It's amazing how many stories are so similar, well done for finding the connection so quickly! Good luck with the move and blood tests, if you get them done. You can't see another doctor for a 3rd opinion before you move, and insist on blood tests?


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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Thanks, guys. You are so awesome. Thank you for all your kind words and advice. I think it really helps to have people in my same position to talk to. I've only been considering Celiac's and Gluten Intolerance for a month now, and it's still a very terrifying prospect.

What are the pros and cons to actually getting the testing done? I know my one big worry is that when I have kids it might be that much harder to get them screened without a diagnosis for myself, since it "supposedly" doesn't run in the family. I'm also kind of there with GlutenFreeManna because after just one week of eating gluten again (which was after only one week of being gluten-free) I found that I had started not liking the taste of things I used to love (like ramen) or that they made me sick even faster. (cookies, pizza rolls, etc.)

Telling a GOOD doctor that you are completely gluten-intolerant should be enough to get your kids screened. All bets are off with bad doctors. For yourself, it's a question of comfort. I declined a gluten challenge with the understanding that I would have to eat a celiac diet in case I am actually celiac. Gluten makes me sick enough that eating a truly gluten-free diet and not cheating with the occasional Cinnabon is something I would do anyway. If you are less inclined to be strict, you might want to challenge and find out whether gluten will just make you feel sick or will actually do damage.

The cons are a month of misery (plus however long it takes you to recover). Also, one person on the board said she had a lingering problem that started during the challenge. I wish I could remember what she said happened, but my thyroid is low lately and my memory is shot. (Thank heavens it showed up low on blood tests yesterday so my Dr. is fixing it.)

My other question has been how long does it take on gluten before your small intestine is damaged enough to cause you to be malnourished? My above-mentioned friend said her mother-in-law was thin as a rake and almost deathly before she was diagnosed, and is using that to tell me that I have IBS. (though she says that she's done a lot of research on this on my behalf...but I'm guessing she hasn't found this forum, or 20 other websites that list constipation as a symptom.) Sorry, just ranting there, a bit.

I'm very sure that my kidney infection back in Nov 08 was what triggered this, and I really don't think a year and a half is enough time to destroy the small intestine enough for me to look like that. I stopped eating back in 06 almost completely from Depression, and it still took me about a year to start looking sick. This time I also started out with more meat on my bones than back then just because I tend to overeat slightly to make sure I'm not undereating. My logic is sound, right?

Yes, your logic is sound. You sound a little scared, which is understandable. Once you start absorbing nutrients properly, you will start to heal yourself. The longer you've been having malabsorption, the longer it takes to heal. A year and a half is actually a relatively short time compared to a lot of folks around here. If you decide to gluten challenge and do some damage, it will heal back up and your body will repair itself.

As far as overeating slightly, that's not a healthy habit. Instead, if you're scared of malnutrition try to get most of your calories from nutrient-dense foods like dark, leafy greens, brightly colored fruits and vegetables, high-quality meats, yogurt, nuts, seeds, legumes, and the whole grains we can have like brown rice, amaranth, buckwheat, and quinoa.

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Again, thank you everybody. Your words have all helped immensely.

Skylark, I want to say a special thank you to you, first of all because you seem to be everywhere on the forum, and in doing so you still seem to care for each one of us individually. You're there to help us when we're scared and to slap us when we're being silly or stupid, or gently correct us when we make mistakes. It takes a special person to be able to do all of that, and I thank you for it.

I'm seriously considering not bothering with doctor's tests. I added gluten back in for a week, and a full week after that and I'm only just now starting to feel better...I don't really want to think what it would be multiplied by 6. My dad also pointed out today that the science fields are improving rapidly, especially in the genetics department, so that in a few years when I decide to settle down and try for kids maybe there will actually be some sort of "gold standard" for diagnosing not just Celiac's, but gluten intolerances as well.

I really don't have a problem with not eating any minuscule amount of gluten if I just think with the mindset of, "If I eat it, it'll kill me." That kills pizza cravings pretty quickly. It's also a good thing that I can cook.

Most of it is that I LOATHE being sick, and I'm pretty sure most of you feel the same way. I don't know if I can intentionally cause myself to be sick, knowing what I do now. I look at a packet of ramen nowadays, and my stomach churns just thinking about how it made me feel.


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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Again, thank you everybody. Your words have all helped immensely.

Skylark, I want to say a special thank you to you, first of all because you seem to be everywhere on the forum, and in doing so you still seem to care for each one of us individually. You're there to help us when we're scared and to slap us when we're being silly or stupid, or gently correct us when we make mistakes. It takes a special person to be able to do all of that, and I thank you for it.

I'm seriously considering not bothering with doctor's tests. I added gluten back in for a week, and a full week after that and I'm only just now starting to feel better...I don't really want to think what it would be multiplied by 6. My dad also pointed out today that the science fields are improving rapidly, especially in the genetics department, so that in a few years when I decide to settle down and try for kids maybe there will actually be some sort of "gold standard" for diagnosing not just Celiac's, but gluten intolerances as well.

I really don't have a problem with not eating any minuscule amount of gluten if I just think with the mindset of, "If I eat it, it'll kill me." That kills pizza cravings pretty quickly. It's also a good thing that I can cook.

Most of it is that I LOATHE being sick, and I'm pretty sure most of you feel the same way. I don't know if I can intentionally cause myself to be sick, knowing what I do now. I look at a packet of ramen nowadays, and my stomach churns just thinking about how it made me feel.

There are very few pro's I can think of to getting an official diagnosis as an adult. PERHAPS the only thing I can think of is if you frequently fly on long plane trips and need a doctor's note for the airline to arrange gluten free food. But most airline food is pretty gross anyway and you can still bring your own foods on most flights, so that's an option. Some career choices might require people to eat at work functions, so if your job is anything like that then you may need a doctor's note to get your boss to take you seriously and offer gluten-free choices for dining or consider a career change. The only other advantage as an adult would be convincing the people in your life that refuse to believe it's a serious illness. Many here have stories of friends or relatives intentionally sneaking gluten into their food to "prove" they don't have to be gluten free. I'm fortunate in that my family lives far away but has been understanding so far and my husband supports me 100% and has even adopted a mostly gluten free life for me.

As far as pizza and ramen there are tons of gluten free alternatives. Go to an Asian market and get yourself some rice noodles or bean thread noodles. For pizza, go to glutenfreeregistry.com and click the button on the left that says "I want Pizza" It will tell you if there are any gluten-free pizza places in your area. Even if you have no gluten-free pizza places near by don't despair. There are several brands of gluten-free frozen pizza or pizza crusts: Glutino, Amy's, Chebe are just a few I have seen. Also a ton of different mixes out there to make gluten-free pizza crust at home like Pamela's. It may be trial and error finding one you like, some thigns are better than others, but it's possible and new products are coming out all the time. I do recommend though that you start your gluten-free diet with a more whole foods approach and work up to using gluten-free packaged foods. Since many of us can't tolerate other foods in addition to gluten it helps to know what those food are prior to trying out a bunch of packaged food.


A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

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Thanks for the kind words, Torimuse. :wub:

I didn't realize how much I craved the company of a community of people who understand what it's like to have a lifetime of medical problems and find out that it was all caused by a single food. The support here is tremendous.

It sounds to me that you'll be fine without the diagnostic testing. It sure would be nice if we get a "gold standard" test that covers gluten intolerance too. I sure understand your comment about feeling queasy looking at ramen. :lol:

I wish Dr. Fine at Enterolab would do some studies. His fecal tests seem quite sensitive but if he's worked out the specificity he's not sharing it with his clients or the scientific community. (I suspect an unacceptable false positive rate, but I've been trained to be a cynic.)

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Thank you, thank you, a million times thank you. Every time I log in here, the fear subsides a little bit more, and all of you are to thank for that. :)

I've officially been gluten free for another week now. (did a week off, week on, and now I've been back off) I'm suspicious of eggs now, (egg free since July 1) but really hoping it was just a longer recovery from the week of intentional gluten. I didn't eat eggs the first gluten-free week, and it took almost twice as long to start feeling better the second gluten-free week. I'm just very thankful that I haven't gotten any reaction from dairy or soy.

I've heard different theories on how long you should be free of something before introducing it back to see if there's a reaction. Anything from 1 week to 1 month. What's the best time to wait?


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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My dr. said to be free at least 10 days, but preferably two weeks. Basically, you want to give yourself plenty of time to recover significantly to make it easy to tell if there is even a mild reaction. Potentially, you could wait longer, particularly if you are still noticeably improving. And depending on how much you dislike avoiding them...


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Just a suggestion:

If you have decided to get tested once you move, do some research now on doctors in that area and make your appointment right away. If you wait until you move, it will be just that much longer until you can get tested. You could be consuming gluten for quite some time.

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Glad to hear you're less afraid. By the way, as awesome as this board is, there may be another reason you are feeling better emotionally. Anxiety is another symptom of gluten intolerance, as is depression.

If I suspected a food reaction back when I did my elimination diet, I waited at least two weeks before trying a food again. If I had any tummy trouble or wasn't feeling great at two weeks for any reason I waited until I felt well again to keep from getting confused.

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I'm suspicious of eggs now, (egg free since July 1) ... I'm just very thankful that I haven't gotten any reaction from dairy or soy.

Who needs eggs anyway? ;) I get a very strong GIT reaction to eggs around 1 to 1.5 days after eating them, it's some sort of food intolerance. Even small amounts of egg in cake seems to get me now, so I'm also now egg free :( Kind of limits the breakfast options, but at least there's still bacon right! I unfortunately also react in a similar way to chicken and turkey.

Google for "egg allergy" lists - they'll help you avoid all the sneaky egg-based ingredients, depending on how sensitive you are. Apparently sometimes egg is added to cappacino foam to make it frothier - so go for cream/non-cappacino instead.

Glad to see a fellow egg non-eater :) Good idea to eliminate it for a week or so, try a small amount when you're feeling better and see if you get a clear reaction from it.


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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You sound a lot like me. I've always had mild problems with occasional bad flareups (that doctors never took seriously and told me to treat IBS with more whole-grain fiber) and a 6-year struggle with infertility makes me suspect that I've had latent disease since I was a teenager. But full-blown celiac symptoms kicked in last September after a really nasty upper respiratory infection: daily bad headaches, fatigue, brain fog, bloating, days of constipation followed by days of diarrhea, nausea, mouth sores, sudden complete dairy intolerance accompanied by sudden inability to eat other foods I'd always eaten and loved. My husband is a homebrewer and beer snob, and for years we've gone to local beer fests. I always had fun, maybe got a little tipsy, but never had problems. At last October's fest the beer did such a number on me that I don't actually remember how we got home. I remember dry-heaving from the nausea afterward. I hadn't had any more beer than in previous years, never got sick when I drank previously, and couldn't figure out what was wrong. My husband finally convinced me to see the doctor and get tested for celiac disease after Thanksgiving dinner- a very gluten-laden event complete with my SIL's homemade whole-wheat rolls with extra gluten added (I felt rather awful from that dinner for several days). Even with a family history of autoimmune disease on both sides and the sudden onset of symptoms, my doc refused to believe that it could be celiac disease because I wasn't losing weight, I didn't always have diarrhea, and I'm a grad student so it must just be due to stress. She ran a general panel of tests and included one of the 6 or 7 blood tests for celiac- TTG IgA, which is apparently meaningless without total IgA and is often false negative (I'd already gone low-gluten since that was the only thing that gave me any relief). When the TTG test came back negative she refused to run anymore tests, told me to eat more dairy for calcium, and suggested that I see a nutritionist about elimination diets to see if a food was causing the IBS. *head desk*

I went completely gluten-free right after Christmas and have never looked back. I can't remember the last time I felt this good. My sinuses and seasonal allergies even cleared up- I was not expecting that! As for continuing symptoms- it was a couple of months before my gut healed to the point that I could tolerate things like broccoli and bell peppers again, and another month after that before I could eat yogurt and cheese. I eat ice cream now with a lactase pill and have no problems...although I took an accidental gluten hit a few weeks ago (ate food from a contaminated barbecue grill) and have noticed that I'm still a little iffy with dairy again. I guess I just have to wait for full healing again.

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After taking so long to recover this past week, I don't think there's any way in hell I'd be able to do a gluten challenge for a whole month, so I'm pretty much sitting at Self-diagnosed. Also, I discovered while visiting my parents this week that I'm not going to be able to get on their insurance 'till January, and by then I *should* be done with any elimination diet experimentation.

Skylark: I'd been reading that here on the board about the mental disorders, and it makes a ton of sense in my case, now that I'm looking back. Hindsight is, after all, 20/20. In my life before I was distinctly intolerant, I'd had only one "clinically" depressed moment in my life, but it was at a point in time when my life had hit the bottom. One of my really close friends and mentors died of still unknown causes, and was found by his 9 year old daughter. I was a wreak, but time has been healing that wound.

Seemingly all of a sudden, though, maybe about 2 or 3 months after my infection, I became withdrawn from my friends, snippier than usual, and took to hiding in my room reading or cross-stitching. Once the school semester started, I found myself sleeping late, sometimes even throughout the entire school day. Any little perceived insult was enough to make me irate. This was attributed to me working 3 jobs and going to school full-time, but I remember always thinking, "This isn't me," and wondering what had gone wrong. It's not all magically "poof! gone!" but the first thing I noticed that changed mentally was that I can wake up in the morning again, if I've got something to do. Even after posting on this board at 3am. ;)

Random question for you, since you seem to know more about the other diseases/disorders with similar symptoms. Everything I've seen on here is obviously from a specific group of people, but they all seem to scoff at the IBS diagnosis. Is IBS really just a myth that the doctors use when they don't know what else to say, or is it a real disorder? I only ask because of the constipation symptom that I exhibit. Also, in gluten intolerant people who have constipation instead of diarrhea, is it usual for us to take longer to realize we've been glutened than those with the diarrhea do? It seems to be a "within minutes to a couple hours" for you guys, and I don't usually notice anything 'till the next morning.

Marz: I'm *trying* to stick to whole-foods, like has been suggested here, but with traveling back and forth between Illinois and Nebraska, I've unfortunately been slacking. Maybe I should check out those sites, just to be able to find hidden eggs so I'm not completely ruining my elim diet. I really need to stop eating out...but it's so hard to say no when your mom offers to buy you PF Chang's... ;)

And, yes, yay for a fellow egg avoider! :) I'll have to learn the ropes from you.

i-geek: It's really, really funny how many of us on this board go, "Hey, you just told my story with different details!" I'm glad to hear, though, that it seems you'll be able to eat dairy again as soon as your intestines heal enough. A friend of mine is gluten/dairy intolerant as well (found her through a mutual friend when my intolerance was discovered), but she still has a long while to go before she'll be able to safely try dairy again.


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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Gee, that mental stuff sounds familiar. I have two afghans and five handmade sweaters to show for my celiac "antisocial" and obsessive tendencies. :lol: Sorry you went through it too. You'll definitely feel "more yourself" as the gluten-free diet takes hold.

IBS is an absolute quagmire. It's much like depression. It's common, seems to have multiple underlying causes, and is mostly treated symptomatically. Doctors rule out anything well-defined like Crohn's or ulcerative colitis, and everything else ends up in the IBS pile. There are studies pointing to an inflammatory process, and some meds that can be helpful. There are also studies where some IBS patients were treated successfully with probiotics. Unfortunately, awareness of gluten sensitivity and celiac is so poor among doctors that a lot of celiacs end up with an IBS diagnosis, rather than the celiac diagnosis that caused IBS as a symptom. I got a double-diagnosis. I had my gluten problems labeled as both "IBS" and "gastritis" by different doctors. :huh:

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I had Enterolab testing after my gastro refused to test me for Celiac based on a negative screen 5 years ago. If you are gluten free, you can still do the cheek swab genetic test to make sure you are susceptible to celiac. I had 2 genes and this convinced my paediatrician to test my slow-growing 3 yr old. I've been gluten free for 30 days and can't imagine a 6-week gluten challenge for a possibly inconclusive blood test again. I see my PCP and will instead ask for long-overdue chemistry tests that look for signs of malnutrition (Vitamin D, Vitamin B-12, etc.) I also had sky-high auto-antibodies this time last year, so I'm curious to see whether going gluten free lowers their levels. Maybe I'm not a ticking time bomb for RA, Hepatitis or Lupus after all!

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Zizzle: I hope your numbers go down quickly. :)

So I've got new discoveries...I had a very distinct reaction to some chocolate milk today. (okay, it was more than some...a full quart, which is not unusual for me) However, before I got even halfway through, I started feeling my stomach turn. The milk wasn't spoiled or anything, it tasted great, hence why I finished the quart. Probably shouldn't have done that. :unsure: So now that's got me wondering exactly what will give me a reaction or not.

One of my close friends went through an elimination diet for her weird random food allergies a year or so ago, so I'm not unfamiliar with them. My plan is to avoid all the major 8, as well as potato, nightshades, and lectins until I move in 2.5 weeks. Then I'll start introducing, one by one, peanuts, tree nuts, fish, and shellfish, since I'm pretty sure I won't have a reaction to any of these, leaving my body another month to detox from dairy and eggs and everything before starting (probably in this order) nightshades, soy, lectins, potato, eggs, dairy.

Does this sound reasonable? It sounds irritating as all hell, but manageable to me.


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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My plan is to avoid all the major 8, as well as potato, nightshades, and lectins until I move in 2.5 weeks. Then I'll start introducing, one by one, peanuts, tree nuts, fish, and shellfish, since I'm pretty sure I won't have a reaction to any of these, leaving my body another month to detox from dairy and eggs and everything before starting (probably in this order) nightshades, soy, lectins, potato, eggs, dairy.

Does this sound reasonable? It sounds irritating as all hell, but manageable to me.

I would be really interested in hearing about your intention to avoid lectins, amd what led you to this conclusion, as one who believes wholeheartedly in lectin intolerance.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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I would be really interested in hearing about your intention to avoid lectins, amd what led you to this conclusion, as one who believes wholeheartedly in lectin intolerance.

It was somewhere on this board that I first read about it, and then within a couple days I ate a can of pork and beans and had a reaction. Granted, I could've been glutened by "natural flavors," (2am and a holiday, couldn't call the company) but it's one of those "better safe than sorry" moments for me right now. The only problem I'm having is trying to define them. Right now, beans (legumes), seeds, whole grains, and nuts seem to be what I've come up with, but I'd be grateful for any corrections or additions. Also, any ideas as to what order I should start introducing foods...


Self-diagnosed June 7, 2010.

After some dietary experimentation, I'm gluten-free as of June 28, 2010.

Egg free as of July 1, 2010 for elimination diet testing.

Distinct reaction to dairy July 8, 2010.

Going on full elimination diet to rule out all possibilities.

Dairy, soy, nightshade, fish, shellfish, mushroom, peanut, tree nut, and lectins that weren't specified in the above list free as of July 9, 2010.

Strikeouts indicate re-introduced foods that did not generate a reaction.

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One of my close friends went through an elimination diet for her weird random food allergies a year or so ago, so I'm not unfamiliar with them. My plan is to avoid all the major 8, as well as potato, nightshades, and lectins until I move in 2.5 weeks. Then I'll start introducing, one by one, peanuts, tree nuts, fish, and shellfish, since I'm pretty sure I won't have a reaction to any of these, leaving my body another month to detox from dairy and eggs and everything before starting (probably in this order) nightshades, soy, lectins, potato, eggs, dairy.

Does this sound reasonable? It sounds irritating as all hell, but manageable to me.

It's a pain in the butt. :lol: I went all the way down to lamb, rice, carrots, and lettuce for two weeks. Like you, I started introducing things I didn't expect to react to like citrus, chicken, and cruciferous veggies first. I left the major allergens to last. It's possible to get confused by delayed reactions and mild sensitivities so keep a good food diary. I have a strong wheat reaction, but I had such a mild reaction to rye that I didn't realize I was sensitive to gluten rather than wheat for quite a while. I was eating some rye bread and crackers and feeling OK. When I stopped eating rye bread and crackers in an attempt to lose weight, a little lingering GI trouble vanished and I realized I couldn't eat gluten.

Also, don't assume you'll be sensitive to non-gluten foods forever. Some sensitivities clear up as your gut heals. I was sensitive to casein and soy but that all resolved after I'd been gluten-free for a while.

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