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Undiagnosed For So Long…What Can I Expect?


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#1 slee11211

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Posted 04 August 2011 - 03:24 PM

Hi all, Thanks to anyone willing to tackle this. Just diagnosed 3 wks ago (I'm 45), likely this has been going on since childhood…was always referred to by family and friends as a hypochondriac even though this MORTIFIED me. I felt like I was a warrior, strong, overcoming each new and constant physical and mental hurdle that was inevitably placed before me. Not a fun thing to go through…and it went on for so long that I've had years of chronic hives, bouts of IBS, crippling GERD and reflux, chronic sinus and other inflammation problems, stomach ulcer, lactose intol, chronic plantar fasciitis, low immunity so I catch everything, brain fog, fatique, loss of concentration. Doc says that because it went unchecked for so long, I've likely got Hashimoto's and have developed a host of other food allergies.

So, given that it's only been 3 weeks, I'm sane enough to realize that I will not be one of the "overnight relief" people with the glorious lifting of any and all symptoms 3 days into gluten-free diet….but I'm hitting the point of being a bit depressed over the multitude of things I'm dealing with, now that I'm acutely aware that they are NOT all in my head. It's like I have the freedom to actually admit that all these things are happening, they are real, and hopefully will now clear up with some time and energy. But it's a lot to take in. (obviously, part of "dealing" was a serious dose of denial! :blink: )

I don't have another visit with my new doc for a few wks (he confirmed all this on first visit, with all my bloodwork and tests in hand, sent me away with basic info and a good bunch of helpful supplements and said he'll see me in 5 wks) for awhile, so I'm hoping to hear from others here who might have started their journey in a similar spot. Wondering how long it might be before I notice any kind of a change…what to expect. I'm 45 and feel like the last 20 years were pretty much a blur except for the very lucky times I was in the care of people who were incredible healers (but still didn't know it was Celiac).

Can anyone share any advice or wisdom with me to get me through these few weeks. I'm also smart enough to know that after the initial ELATION of finding out I was not insane and that all I had to do was rid my diet of some irritants, I am now experiencing a bit of normal low….but it would still help to hear what the next year might hold for me…

Thanks for any input!
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#2 Marilyn R

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Posted 04 August 2011 - 04:04 PM

Hi Slee, and welcome,

I went undiagnosed (and am still undiagnosed!) and it took me 15 months to really feel better. That said, some people recover more quickly, and I felt better gluten-free than pre-gluten-free.

I'm older thank you so that could shave time off your recovery, and even though we share some symptoms, some are different. That could shave even more time off. Still even if it's 15 months or 16 months (or just a few months, maybe you'll be lucky), that isn't so bad when you look at it from the perspective of how long you've been sick.

Here's a link that you may find helpful.

http://www.celiac.co...eces-of-advice/

Wishing you good health,
M.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#3 starrytrekchic

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Posted 04 August 2011 - 05:56 PM

I went 11 years undiagnosed & like you, felt like several years are just blurs (my twenties for me.) It DOES get better. You'll have a lot of up and downs, but as long as you're trending up overall, you're doing things right.

It does take time. I was one of the 3 days into the diet people, but that was followed by lots of downs, too. I would say the bulk of my healing was done by 6 months, a few more issues cropped up around 9 months or so, and it was a year+ before I really felt consistently good.

It's a learning curve. Keep reading. Be sure you're on top of your vitamin and mineral levels. The first few months are the hardest, because that's when you're figuring out your body's specific reactions & sorting through fact and fiction for celiac & trying to figure out what you can eat. My advice is to get a handful of foods you know are safe and build from there.

If you ever feel like you can't eat anything--like you're reacting after every meal--then you've likely been glutened in the days previous. This one took me months to realize, but I react after every meal, regardless of content, after I've been glutened (for several days.)

You might start reacting more strongly to gluten at first. Don't let this discourage you. It's your body getting stronger & your immune system more capable. I noticed that after a year, my reactions markedly decreased & now they're much lower than they were before I was gluten free, but that adjustment period can be hard. Good luck!
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#4 slee11211

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Posted 04 August 2011 - 06:40 PM

You might start reacting more strongly to gluten at first. Don't let this discourage you. It's your body getting stronger & your immune system more capable. I noticed that after a year, my reactions markedly decreased & now they're much lower than they were before I was gluten free, but that adjustment period can be hard. Good luck!
[/quote]


Thank you. This is helpful. I think I must have been only seeing stories about how quickly this all resolves. I know better, because I'm not a twenty something…this will surely take time. But it's reassuring to actually hear this.
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#5 Diana76

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Posted 05 August 2011 - 07:02 AM

I've been diagnosed since April. I am still having issues but can tell I am getting better. I feel better on most days. I was very depressed after the dx and still am at times because the diet is so life changing. I don't feel normal like everyone else. Eating out is scary but like I said it is gettin better. Hopefully you have someone that you know that can help. I know no one in person with this disease. I've tried to join support groups but the two close to me stopped right at the time I was looking. (go figure) like me, just hang in there and it will get better!!! I hope.
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#6 Fairy Dancer

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Posted 05 August 2011 - 02:59 PM

I have been almost gluten free now for two weeks (I had a few days where I did eat gluten in the form of wheat but had a vile reaction to it 3 times in a row so pulled it back out again) as I am trying a gluten free diet to see if it helps with some of the symptoms I am getting (fatigue, feeling hung over and unwell most days, stomach issues etc).

Anyway it's very early days but I have noticed very slight improvements in some ways, even if they have not yet gone completely (slightly less acid reflux, diarrhoea is slightly less frequent and the hung over feeling is and was passing until I spent today with a migraine (wrong time of the month) so for now its back again until that passes...although on saying that it feels more like I have had a labotomy than anything lol. Now I know how jack nicolson felt in one flew over the cuckoos nest *ahem*).

Anyway, I think it takes a bit of time for your system to clear itself out properly and to recover from any damage or upset. The amount of time that takes seems to vary from person to person. I hope your symptoms subside quickly and you are feeling better soon.
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#7 T.H.

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Posted 05 August 2011 - 03:41 PM

I was diagnosed at 38, and I've likely had this disease since my mid-teens, if not earlier, judging by the symptoms that I've had my whole life that went away on this diet. Don't know how similar this may make the experience, but here goes!

If you are like many of us, there's going to be some anger eventually cropping up. Years of suffering, and pain, and problems, and not only did you not get help for it, you got belittled and told it was all in your head. That's a pretty common theme for a lot of us, and it's very, very frustrating.

Now admittedly, for a lot of symptoms, 20 years ago they didn't KNOW that some of our symptoms were possible as Celiac issues. I think most of us would be okay with that if we hadn't had so many doctors dismiss our symptoms as imaginary simply because they didn't know the cause.

So finding a way to deal with that, potentially, is usually good. I know some people vent, some help out others on the forum or in real life by passing the word (since doctors still don't do a great job diagnosing this), some write letters to previous doctors who gave the wrong diagnosis and tell them what the problem ;pll;actually was, and just how awesome it made them feel to be told it was all in their heads. Some people just exercise or focus on the fact that they're getting help now, whatever works, you know?


A lot of us also go through a depression period, when we realize everything we can't do now, can't eat, what it will mean in our lives. Eating out is not something that can ever be done lightly now, because getting sick at restaurants is beyond easy. Sometimes this comes AFTER we're happy that we finally know what's wrong. Mourning a loss like this is pretty normal, for many of us. Just takes a while. Although for some, once we start to heal, it doesn't feel like much of a hardship at all, so you never know. :-)

The diet itself is a pain in the butt, at first. It's like jumping into a new job where you don't know the schedule, or where the supplies are, or what all the acronyms and the forms are for, and it is overwhelming and mind-boggling. But just like a job, eventually it'll be every day sort of stuff. It might not ever be as easy as it was before you had the diet change, but there's one thing about it that surprised me, and will hopefully be your own experience.

When I went gluten-free, when I was finally healing, I had so much more energy, clarity of thought, lack of pain and such that dealing with all this new stuff was easier now than just getting through a normal day USED to be. My diet is so limited now it's a laugh (I had lots of food allergies, too, turns out), and yet I feel less depressed than I have for decades. Hopefully, the effort will be the same for you, too.

Another issue that might apply in your case is...becoming a different person, in a sense. Some of my symptoms that match yours would be: sinus problems, inflammation issues, chronic plantar fasciitis, lowered immune system, brain fog, fatigue, low concentration. There were others, too, like joint pain, anxiety or anger management issues, insomnia and light sleeping, overweight, vertigo, clumsiness, problems with the noise in a crowd and lights at night while driving.

Every last one of these is freaking gone. I can't even SAY how amazing that's been. Old injuries I had that always twinged when I'd do certain things finally healed up. I can walk without pain, think again, sleep again and feel rested, breathe, go through a day with no headaches or joint pain. And I can FEEL. Before, there was this low to mid level irritation that was always there, all the time. Same with this overwhelming sadness that never completely went away. And it is. Gone. Things that would drive me nuts before I just don't even mind at all right now.

It is honestly like I get to be the person I always wished I could be, in a way. Although it's funny, because the people around me still expect me to be more irritable, more likely to be annoyed by things, etc...

And when I'm not that way anymore, it's kind of baffling for them to see me as a new person. Baffling for me, too! Kind of have to figure out who I am all over again! :) Not a bad thing, really. Better now than never!

I really hope that you get to experience this too. Just life changing in the extreme.



And to actually help facilitate that, some real quick gluten facts!
1. 'Gluten Free' doesn't mean 'zero gluten.' It's a legal term defining a low range of gluten that is allowed for a food to be labeled 'gluten-free,' usually less than 20 parts per million, or 20mg/kg. In the USA (didn't know if you were here or somewhere else?), there is no law regulating our gluten-free food, sadly. So some companies are great about trying to keep their food really low gluten, and they test their products to make sure they are less than 20ppm. Some companies don't, and their products may be contaminated with gluten at higher levels. No way to know unless they tested, or we react. More on this in a sec.

2. Celiacs seem to have varying levels of sensitivity. Some of us can have pretty much all gluten-free processed food and we're fine with that level of gluten. Some of us will get sick on the low level of gluten usually allowed in gluten free food. There's no real test for which end of the spectrum you're on except how you feel, and how well you're healing, so...

3. Because of the two previous issues, a lot of celiacs go gluten free and stay away from a lot of gluten-free processed products at first, sticking with fresh fruits, veggies, meats. Celiac disease damages the part of the villi that makes lactose, so after a few months/year of healing, some celiacs find that they are suddenly no longer lactose intolerant any more, which is awesome. Beans, nuts, seeds, and dried fruit are often processed in facilities that process wheat, so have a slightly higher risk level that the meat, fruit, and veggies. Some of us avoid the gluten-free grains at first, because they can be contaminated, too. If you ARE going to use some, it's probably best to stick to some that have been tested for gluten at first, so you can know you're not getting super contaminated gluten-free grains.

One benefit of doing this? It's a bit more restrictive at first, but as a result, when you start adding in more foods, especially trying out processed ones, you feel like just eating 'gluten free' is a huge amount of food, because it's so much more than you WERE eating. :D

4. Re: the allergies. It's a REALLY good idea to keep a food journal. Just basic ingredients, time you ate, and how you feel, if that's all the energy you have. If you have processed foods, you should mark down the brand - many times an equipment line may be contaminated with gluten, so you'll want to know if you get sick after eating from a certain company, you know?

Do it for a few weeks, and if you are feeling ANYTHING that is happening consistently after you eat something - even if it's 24-48 hours later - it's worth dropping a food to check that out. As an example, I was getting more clumsy after I had an oil. Which seemed stupid as heck, so I didn't think it mattered. Turns out, I get vertigo as a symptom, and one oil I used has slight contamination (processed on a line with wheat germ oil), and it was giving me just enough vertigo to make me clumsy and bump into things.

5. Of the allergies I see people here on the forums seem to get, dairy, soy, nightshades, and corn or other grass based grains seem to be the most common. If you think you are having issues with any of these, I'd go and check some allergy sites for the soy, dairy, and corn and grains issues - these hide in a lot of foods where they aren't listed on the label, because they are part of processing and don't have to be. <_<

6. If you like ethnic foods, they can be really nice to check out for gluten free foods that have ALWAYS been gluten free. Ethiopian food is good for this, and a lot of asian food, with gluten free soy sauce (or coconut aminos, which you can get at places like whole foods, if you are allergic to soy). Some chickpea based foods from indian and greek cuisine are very nice, too.




And...I should probably shut up now. :D Wishing you the best of luck. I hope this changes your life in all the positive ways it changed mine!
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#8 Fairy Dancer

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Posted 05 August 2011 - 04:24 PM

@T.H

You said:

"Another issue that might apply in your case is...becoming a different person, in a sense. Some of my symptoms that match yours would be: sinus problems, inflammation issues, chronic plantar fasciitis, lowered immune system, brain fog, fatigue, low concentration. There were others, too, like joint pain, anxiety or anger management issues, insomnia and light sleeping, overweight, vertigo, clumsiness, problems with the noise in a crowd and lights at night while driving.

Every last one of these is freaking gone. I can't even SAY how amazing that's been. Old injuries I had that always twinged when I'd do certain things finally healed up. I can walk without pain, think again, sleep again and feel rested, breathe, go through a day with no headaches or joint pain. And I can FEEL. Before, there was this low to mid level irritation that was always there, all the time. Same with this overwhelming sadness that never completely went away. And it is. Gone. Things that would drive me nuts before I just don't even mind at all right now."

I say:

I also get symptoms such as brain fog, fatigue, headaches, depression, anxiety and anger issues, insomnia, overweight, vertigo, clumsiness and problems with noisy crowded places and light sensitivity. I have found in the time that I have been gluten free that my anger is slowly subsiding and I am now less irritable and grumpy than I was but I was not aware that going gluten free could help with other issues like the crowded places etc.

Now I am hoping that my issues with those things will eventually fade too! They, combined with my stomach issues, have long been a pain in the arse so to speak lol.
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#9 cyberprof

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Posted 05 August 2011 - 08:44 PM

Slee, hang in there.

It's funny about the plantar faciitis. I was "diagnosed" with it and I had it so bad that I couldn't walk at times from 2004-2007. I slept with night braces on both feet for over a year straight in 2007. It made me wear running shoes to work. I had to stop training for a marathon.

After I was diagnosed it took me a few months to realize that I no longer had plantar pain. Now I wonder if I really had true plantar faciitis or if it was just inflamation from 30+ years of undiagnosed celiac. And people look at me funny when I tell them that going gluten-free eliminated my plantar faciitis but it couldn't have been anything else - it's too much of a coincidence. Also gone: mouth sores every week or two, constant smelly flatulance, daily D, stomach pain and bloating after eating, arthritis and daily back pain, anxiety and 75% of my rosacea.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#10 slee11211

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Posted 06 August 2011 - 02:09 PM

I was diagnosed at 38, and I've likely had this disease since my mid-teens, if not earlier, judging by the symptoms that I've had my whole life that went away on this diet. Don't know how similar this may make the experience, but here goes!




wow! that was a LOT of information...and you're right, we do sound similar. I believe mine went on from about 8 till now (45), so I think it will definitely take awhile. I will read through all this again, thank you so much for taking the time to write it all down. I'm so incredibly hopeful (overall, a good sign!), but yes, yesterday I was PISSED at my past assinine doctors who could do nothing for me, even though they had so many GLARING clues staring at them. So yes, I get that this is going to be a process and that there will be a few phases to move through....but overall, I think just the utter pure JOY of feeling better will help. My ONLY worry is that the healing may come a little slower for me due to the many sensitivities at this point and the problem with yeast overgrowth. But I also know that overall I'm strong - I went 37 years with this and NEVER let it get the better of me except for a few short times, and even then I instinctively knew how to get past the problem time and rebounded with joy and a new sense of being. I can only imagine what this will feel like! Very excited.
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#11 slee11211

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Posted 06 August 2011 - 02:18 PM

Slee, hang in there.

It's funny about the plantar faciitis. I was "diagnosed" with it and I had it so bad that I couldn't walk at times from 2004-2007. I slept with night braces on both feet for over a year straight in 2007. It made me wear running shoes to work. I had to stop training for a marathon.

After I was diagnosed it took me a few months to realize that I no longer had plantar pain. Now I wonder if I really had true plantar faciitis or if it was just inflamation from 30+ years of undiagnosed celiac. And people look at me funny when I tell them that going gluten-free eliminated my plantar faciitis but it couldn't have been anything else - it's too much of a coincidence. Also gone: mouth sores every week or two, constant smelly flatulance, daily D, stomach pain and bloating after eating, arthritis and daily back pain, anxiety and 75% of my rosacea.



I have luckily found a really good naturopathic doc that sees Celiac in a very systemic, holistic way....he says that the inflammation in the gut actually causes (or aggravates) inflammation elsewhere in the body (maybe it's a quick way to describe fact that your body is not well, and cannot tackle each instance of inflammation as it comes up, not sure). So yes, he felt that the plantar f. would go away very soon, and probably not return. He related it to the Celiac very clearly. Same with sinus inflammation. And yes, mine has been this bad for last 2.5 yrs too....and really not fun when you have a 4-6 yr old boy to run around after and take all over the city. This is my second summer of plans to run all over and really give this kid the summer of his life...derailed. It's sad. BUT....soon to be gone! I'm sure of it. As with each of these replies, it is good to hear the similarities....I just thought I was a mess, falling apart at 45, and a hopeless hypochondriac. So good to know I'm not alone in this. Wow.
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#12 Lori2

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Posted 06 August 2011 - 04:57 PM

One thing that took me a while to figure out--the timing of symptoms. Some people get an almost immediate reaction, but not me. I finally realized that the diarrhea I got was not from, for example, the blueberries I added that day, but to something I had eaten three days previously. My symptoms start somewhere between 60-80 hours later and then last for three days. I absolutely need a detailed food journal to figure anything out.
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#13 quincy

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Posted 06 August 2011 - 10:12 PM

Hi all, Thanks to anyone willing to tackle this. Just diagnosed 3 wks ago (I'm 45), likely this has been going on since childhood…was always referred to by family and friends as a hypochondriac even though this MORTIFIED me. I felt like I was a warrior, strong, overcoming each new and constant physical and mental hurdle that was inevitably placed before me. Not a fun thing to go through…and it went on for so long that I've had years of chronic hives, bouts of IBS, crippling GERD and reflux, chronic sinus and other inflammation problems, stomach ulcer, lactose intol, chronic plantar fasciitis, low immunity so I catch everything, brain fog, fatique, loss of concentration. Doc says that because it went unchecked for so long, I've likely got Hashimoto's and have developed a host of other food allergies.

So, given that it's only been 3 weeks, I'm sane enough to realize that I will not be one of the "overnight relief" people with the glorious lifting of any and all symptoms 3 days into gluten-free diet….but I'm hitting the point of being a bit depressed over the multitude of things I'm dealing with, now that I'm acutely aware that they are NOT all in my head. It's like I have the freedom to actually admit that all these things are happening, they are real, and hopefully will now clear up with some time and energy. But it's a lot to take in. (obviously, part of "dealing" was a serious dose of denial! :blink: )

I don't have another visit with my new doc for a few wks (he confirmed all this on first visit, with all my bloodwork and tests in hand, sent me away with basic info and a good bunch of helpful supplements and said he'll see me in 5 wks) for awhile, so I'm hoping to hear from others here who might have started their journey in a similar spot. Wondering how long it might be before I notice any kind of a change…what to expect. I'm 45 and feel like the last 20 years were pretty much a blur except for the very lucky times I was in the care of people who were incredible healers (but still didn't know it was Celiac).

Can anyone share any advice or wisdom with me to get me through these few weeks. I'm also smart enough to know that after the initial ELATION of finding out I was not insane and that all I had to do was rid my diet of some irritants, I am now experiencing a bit of normal low….but it would still help to hear what the next year might hold for me…

Thanks for any input!


I was diagnosed at age 48. I had to push for alot of tests after doing my own research. I asked my doc to run blood work to test for vitamin deficiency. Major Vit D deficit which took a year to resolve. 50,000 IU's twice a week for 6 weeks finally pushed that up to normal levels of D. also, had osteopenia and I was always into working out etc but the inflammation was blocking calcium and vit D as well as other essential minerals to build bone, so make sure your bones are ok and your vit D level is ok.
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#14 dilettantesteph

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Posted 07 August 2011 - 04:59 AM

I was diagnosed at age 48 and had been sick since childhood. I missed a ton of school growing up. Lots of my life was wasted. Brain fog, depressions, joint pain, uncontrollable diarrhea, fatigue, uncontrollable anger, lots more. I noticed an immediate huge improvement upon eliminating bread and cereal. Then came a long road of becoming sensitive to lower and lower levels of gluten. I had to find more and more sources of gluten contamination and rid my diet of them. This process went on for about 2 years most intensely, but still goes on every day. I still haven't found any other food allergies. In every case so far, I have been able to find an uncontaminated source which I didn't react to, when I thought that I was having a food intolerance.

I second the recommendation of keeping a food journal. Keep track of not only what you eat, but the source. Tomatoes from one source will not be the same as tomatoes from another. I can't eat them from the grocery store, but the ones in my garden go down nicely. Start with a very simple diet of totally safe things. Then add only one new food a week. Stay away from processed foods at first. Grow what you can yourself, and visit farmer's stands. Try to find ones that use safe farming practices.

What you can look forward to is an amazing new life. You will feel better than you ever have. You will be thinking more clearly and having more energy. The bother of eating this way is nothing compared to the improvement in health. When you despair, remember that it is probably the depression doing it to you and when you get that trace gluten out of your diet, all will be better again.

Even with all sorts of glutenings, I have never gotten as sick as I was before diagnosis. Enjoy your new life.
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#15 gluten free overseas

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Posted 07 August 2011 - 05:26 AM

One thing that is great about this forum is that it is somewhere that you can really express your ANGER. That is something that is really hard when you've gone undiagnosed. I was so overjoyed at how I was steadily getting better and feeling "well" for the first time in my life... but man alive, I was also so furious. Being told that I was melancholy and oversensitive and people just rolling their eyes about whatever ailments I have... and all along I WAS sick. I knew it! So I was angry with my doctors and I was angry with some of my family members and their condescending attitudes about me while I was growing up. I'm tired of obsessing about eating and gluten lurking around every corner. The emotional end of it can be really hard, I wonder how long it will be before I'm really settled in my heart. How different would my life have been if only I'd known sooner etc... It's not easy, it's hard to process. At least, it is for me.

I second the whole "look for other intolerances." I eventually realized that corn gave me rashes and made me super tired. Everytime I ate something with "high fructose corn syrup," it's like it put me to sleep. So that's a really good idea to just scrutinize labels and see if anything else bothers you.
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