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Anyone Find Out Something Else Was Wrong, Too?


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#1 glutenfreeinminnesota

 
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Posted 01 September 2011 - 01:42 PM

My posts are always so long...I just try to be detailed. Thanks to anyone who reads this and has advice!

I still can't believe I lived so long with my bathroom issues I had before getting diagnosed, and that's why I am trying to figure this out NOW. After finding out I had Celiac Disease, and went gluten-free, I couldn't believe how much better I felt! I was diagnosed Nov 2009, and have been secretly glutened a few times, but have always come back strong and back to normal. Well, in the last couple weeks or so, I feel as though I am getting glutened every day. I have been only eating at home and being super careful. I cook everything myself, so there's really no chance of cross contamination as I am OCD with cleaning my kitchen nowadays. Headaches have been occuring on a daily basis for a few weeks now, bathroom visits at least 3 times a day, sometimes 8 or more. Not really having the big D, but having urgency to go and pain to go with it. Every time I go, it's very loose. And I am so freaking tired! Drinking tons of water, constantly, as to ward of dehydration.

I feel like I did before I was diagnosed, afraid to go out somewhere, and always having to know where the bathroom is. Stressing about it doesn't help at all, but I am popping the Imodium and Tylenol every few days as I HAVE to leave my house to work. That can't be very good for my body either...


Could I have another food intolerance suddenly? I have also heard when you have one auto immune disease, you are more likely to get more. My mom was diagnosed with Addison's Disease well over ten years ago, and now just a couple months ago my dad was diagnosed with Lupus...so now I am worried I have some other intestinal auto immune disease, since obviously auto immune diseases run in my family.

Should I check in with my doctor???
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Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

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#2 GFreeMO

 
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Posted 01 September 2011 - 01:52 PM

I'm sorry that you are not feeling well! I have been at this for 2 years. All of a sudden, I can't have casein/dairy anymore. It makes me as sick as gluten did. So yes, it is VERY possible to start reacting to a new food. Other people here have has similar things happen with soy or corn. I would start there and eliminate those 3 and stick with whole foods. Nothing processed like gluten free packaged foods. I would start there!

Feel better :)
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#3 glutenfreeinminnesota

 
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Posted 01 September 2011 - 02:00 PM

I'm sorry that you are not feeling well! I have been at this for 2 years. All of a sudden, I can't have casein/dairy anymore. It makes me as sick as gluten did. So yes, it is VERY possible to start reacting to a new food. Other people here have has similar things happen with soy or corn. I would start there and eliminate those 3 and stick with whole foods. Nothing processed like gluten free packaged foods. I would start there!

Feel better :)


Thanks!! Glad to know I am not alone. I hate the thought of cutting anything else out...but before I was diagnosed I couldn't imagine cutting out gluten, yet here I am very confident about eating and cooking gluten-free. Are there blood tests my regular doctor could do to see if I have other food intolerance? Of course I am going out of state this weekend...so it may be hard to start cutting out other things immediately. I will try it when I get back.
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Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

#4 GFreeMO

 
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Posted 01 September 2011 - 03:01 PM

Thanks!! Glad to know I am not alone. I hate the thought of cutting anything else out...but before I was diagnosed I couldn't imagine cutting out gluten, yet here I am very confident about eating and cooking gluten-free. Are there blood tests my regular doctor could do to see if I have other food intolerance? Of course I am going out of state this weekend...so it may be hard to start cutting out other things immediately. I will try it when I get back.

There is a test for casein. I am not sure if there is a test for corn or soy. I think you would need an allergist for those. If I were you, when I got back home, I would cut out all dairy, soy and corn for 2 weeks and see how you feel. If you are better great, if not, go from there. I can tell you this though. I was eating tons of cheese and ice cream all summer and all of a sudden, it makes me really REALLY sick. I think soy can cause similar issues. I know that soy makes a lot of people here very sick.
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#5 captaincrab55

 
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Posted 01 September 2011 - 03:31 PM

By all means, check with your GI... One could have an issue with H PYLORI too... There is a blood test for that...
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I'm a New Man Without GLUTEN!

#6 Marilyn R

 
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Posted 01 September 2011 - 03:52 PM

Count me in on the getting really sick from soy. And dairy. I'm able to tolerate dairy now, but I understand from other posts that dairy can be a fleeting thing (good today, bad tomorrow.)

I've been tested for a slew of other things by a number of specialists. There are times when my blood work shows up positive for other diseases. (Not cancer, but mixed connective tissue disease, sarcidosis, diabetes so far.)

I think (and I could be wrong) that in each instance I had consumed an alternative grain or oat before the day before or day of the blood draww. (Quinoa or certified gluten-free oats.)

I finally learned to ask the doctor to redraw my blood before I'd see another specialist (co-pay is $50.) 90% of the the doctors looked at me like I had a tree growing out of my forehead, but they'd agree in the end because I'm stubborn. I don't do oats or quinoa anymore, or soy. I'm currently enjoying dairy but understand it may be short term. I'm very careful, we have am almost totally gluten-free kitchen and home. (My compadre brings gluten containing items home in snap shut disposable containers, and my 11 year old dog isn't gluten-free, but I don't feed her, and she isn't allowed to kiss me anymore. :lol:

I hope you figure out what's bugging you, and that you have a good trip.
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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.

#7 Newbee

 
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Posted 01 September 2011 - 05:18 PM

I'm interested in this topic too. Maybe I'm too impatient but I'm on week 6 of being gluten free and I don't feel better yet. So wondering if there might something else that may be making my symptoms continue.
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#8 love2travel

 
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Posted 01 September 2011 - 05:35 PM

It's strange but I did not feel sick from gluten at all. Have been gluten-free now for six months and the last month suddenly have been quite ill and have determined I cannot tolerate lactose (hopefully this is temporary). Who knows? I may have other intolerances as well...
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#9 adab8ca

 
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Posted 01 September 2011 - 05:37 PM

I'm interested in this topic too. Maybe I'm too impatient but I'm on week 6 of being gluten free and I don't feel better yet. So wondering if there might something else that may be making my symptoms continue.

I don't have a lot to contribute to the other intolerances except that I hope you find out what it is and soon...That is horrendous.

Newbee, 6 weeks isn't a long time at all. You could have been sick for years and not really known it. Give yourself time. Some people feel better quickly. Many many more I suspect struggle.
Good luck!
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#10 Newbee

 
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Posted 01 September 2011 - 05:53 PM

Yeah, I suspect I've had celiac most of my life and I've only gotten diagnosed now at age 37. My doctor seems to think I should be completely healed in 6 months. I'm not so sure about that. I saw him a couple of weeks ago and told him I wasn't feeling better yet but that didn't seem to affect his oppinion. I guess I'm afraid I'm not doing enough, either getting contaminated somehow or I wonder if there could be another intolerance. Or maybe I should just settle down. It is hard as family/friends ask me every week if I'm feeling better and I always say no. I've even taken to writing down everything I eat every day and recording how many times I go poo. Thought maybe it would help me figure out something but not so far.
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#11 love2travel

 
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Posted 01 September 2011 - 05:55 PM

Yeah, I suspect I've had celiac most of my life and I've only gotten diagnosed now at age 37. My doctor seems to think I should be completely healed in 6 months. I'm not so sure about that. I saw him a couple of weeks ago and told him I wasn't feeling better yet but that didn't seem to affect his oppinion. I guess I'm afraid I'm not doing enough, either getting contaminated somehow or I wonder if there could be another intolerance. Or maybe I should just settle down. It is hard as family/friends ask me every week if I'm feeling better and I always say no. I've even taken to writing down everything I eat every day and recording how many times I go poo. Thought maybe it would help me figure out something but not so far.


I was told by my dietitian and doctor not to expect to be fully healed for 2-5 years! Six months seems awfully short to me.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#12 Newbee

 
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Posted 01 September 2011 - 06:12 PM

Wow, 2-5 years?! Is that for your blood tests to come back normal? I think that's how my doc is defining 'healed'. So besides feeling bad lately, have you been able to tell much difference in the 6 months of being gluten free?
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#13 love2travel

 
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Posted 01 September 2011 - 06:20 PM

Wow, 2-5 years?! Is that for your blood tests to come back normal? I think that's how my doc is defining 'healed'. So besides feeling bad lately, have you been able to tell much difference in the 6 months of being gluten free?

No - not for bloodwork but for the gut to be healed to the point of a regular person's gut. My bloodwork just came back and my numbers went from off-the-charts-high to negative in five months only! But that is just an indication there is no gluten left. My gut is sensitive and there is still much healing to be done (which I have found with this new dumb lactose intolerance).

Besides feeling icky lately I have noticed very little difference. Slightly less brain fog but I have fibromyalgia besides and there is also something called fibro fog. Aside from that no difference. I really hope my fibro improves as it is downright debilitating; my insomnia is so bad that I get one good sleep per week - hope that improves, too!

But I am not keeping track of days or weeks or months as far as complete healing and not worrying about things happening within timeframes - that would drive me to distraction. However long it takes for my gut to heal is how long it is meant to take. I am just doing my very best in the meantime! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#14 T.H.

 
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Posted 01 September 2011 - 06:28 PM

Admittedly, you might be developing a new intolerance, but honestly, if this has popped up rather quickly, I would take a look at your food supply, first.

You haven't changed anything, but the companies and stores you buy food from might have.

Do you buy anything processed that you eat frequently? Any new bottles/packages/containers of something that you eat frequently? A contaminated batch with a spice or oil, something you eat a lot of, could be the issue. I ran into that once with an oil that was processed on a line that processed wheat germ oil.

Or something in the processing itself could have changed. Maybe a new guy at the meat counter is messier when he coats meat with the flour, so it's poofing into the air more and contaminating the other meat. Maybe the grinder for the ground meat is now also grinding up sausage that contains wheat (I actually got sick from this for a couple months before I figured it out). Maybe the company has changed facilities, or added a new gluten product to the same line the gluten-free food is on.

Just, with such a sudden onset like this, I would suspect a product change or an illness. Along with checking with the doc, it might be worth checking out all your processed foods to see if there's been any changes.
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#15 Newbee

 
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Posted 01 September 2011 - 07:01 PM

No - not for bloodwork but for the gut to be healed to the point of a regular person's gut. My bloodwork just came back and my numbers went from off-the-charts-high to negative in five months only! But that is just an indication there is no gluten left. My gut is sensitive and there is still much healing to be done (which I have found with this new dumb lactose intolerance).

Besides feeling icky lately I have noticed very little difference. Slightly less brain fog but I have fibromyalgia besides and there is also something called fibro fog. Aside from that no difference. I really hope my fibro improves as it is downright debilitating; my insomnia is so bad that I get one good sleep per week - hope that improves, too!

But I am not keeping track of days or weeks or months as far as complete healing and not worrying about things happening within timeframes - that would drive me to distraction. However long it takes for my gut to heal is how long it is meant to take. I am just doing my very best in the meantime! :)


Thanks for sharing your experience with this. It is helpful. I'm glad your bloodwork is normal, too bad you are not feeling better. I hope things improve for you soon! I've heard so many people say they felt better within days or weeks of stopping gluten that I thought that was the norm. I think I'm going to ask family to stop asking me if I'm feeling better. I just end up feeling worse cause I think I should feel better but don't. I keep telling them all I can do is what I'm doing.
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