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gluten-free For 6 Years, Worse Than Ever. Help! New Person Here: )


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33 replies to this topic

#1 gluteymommy

 
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Posted 16 October 2013 - 09:44 AM


Hello everyone! I’d like to introduce myself to this forum, and it is about time. I have been lurking around here for the past 6+ years: ) I am basically at my wits end and in need of some advice.
To give you some background, I was diagnosed with Celiac disease about 6 ½ years ago through blood work and biopsy. My symptoms prior to diagnosis were bloating and C, insomnia, recurrent sinus infections, itching all over, and the list probably goes on. Anyhow, after diagnosis I went straight to a religious gluten-free diet. When I say religious, I mean every item was checked with the company, new dishes and utensils, body care items. I was expecting to feel better. However, I actually felt worse for a long time. When I say worse I mean fatigue, mood issues, aches and pains, sleep problems etc. On top of that I developed DH skin rash about a year after I was diagnosed.
During the past 6 ½ years I have meted out that I am a super, super sensitive celiac. I also have some other food sensitivities that I have discovered. I eat very little in the way of processed foods, and only those that I am sure I can tolerate after years of maddening, extensive “food testing” on myself. However, all of this has only partially helped.
I am only 36, but I feel my health has been on a downward spiral for the past 8 years or so. After having the most beautiful little baby in the world 18 months ago things have only gotten worse. I have recently been diagnosed with scarring alopecia; an autoimmune disease which causes permanent, progressive hair loss. This has been extremely devastating for me to say the least. Also, my primary physician is now referring me to a rheumatologist because she feels I may have fibromyalgia, but no one is really sure. I seem to have many of the symptoms of fibromyalgia including body aches, headaches, sleep problems, and numerous chemical sensitivities. The chemical sensitivities are so bad that I can’t even take a multi-vitamin at this point without a flare-up of symptoms. I haven’t really accepted the fibromyalgia diagnosis yet since I think something deeper, possibly food related? may be going on with me.
I also have sensitive skin, constant chapped lips, thinning, brittle hair and I struggle with anxiety and depression issues. I was tested for thyroid imbalance including antibodies and screening for Hashimoto’s. All tests came back within perfect range.
I have done a lot of research on leaky gut, and think maybe this is an underlying problem for me but not really sure. Several months ago I tried the Specific Carbohydrate diet for 30 days. I was hoping this would be my magical cure, but I only felt worse. My fatigue, insomnia and body aches increased immensely during this time despite eating 2000 calories a day. I had to discontinue the diet because I couldn’t function. I am now trying eliminating grains again and basically eating paleo autoimmune. I am in week 2 and I was sort of feeling better but last night I ate a huge helping of homemade kale chips. After eating that my stomach bloated up and My fibro-like symptoms flared up. I couldn't sleep and I feel like hell today! Is there such thing as a kale intolerance?? Geez. I'm starting to feel like nothing can help me and I'm intolerant to everything!!! I don't know what to eat anymore.I’ve also tried numerous supplements such as EFA’s and vitamin d but my body seems unable to tolerate or process these things and I just feel worse.
Sooooo…just wondering/hoping any of you might have some insight into how I can feel better, since it seems many on here have similar issues? Maybe my issues are not food related and I'm barking up the wrong tree? I’ve apparently baffled my doctor and I haven’t yet gone the naturopath route since I can’t really afford it. I want my life back and I don’t want to feel sick every single day. If I hear one more story about how simply eliminating gluten will bring about perfect health I might scream! This has not been the case for me. Anyhow, glad to meet you all, and any insight would be much appreciated. Thanks!!
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#2 shadowicewolf

 
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Posted 16 October 2013 - 09:52 AM

What about soy and dairy? Are you okay with those?


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#3 gluteymommy

 
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Posted 16 October 2013 - 10:07 AM

What about soy and dairy? Are you okay with those?


Hi! I am avoiding both right now. I suspect a soy issue but not really sure because I rarely eat soy anyway. I have avoided milk for years but have been ok with cheese. I have cut out all dairy for the time being.
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#4 bartfull

 
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Posted 16 October 2013 - 10:44 AM

Have you had your vitamin levels checked? It sounds like you might be deficient, especially seeing vitamin polls don't ahree with you. And BECAUSE they don't agree with you, I am suspecting corn. That is what most pills use as a filler.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#5 jststric

 
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Posted 16 October 2013 - 11:44 AM

From my own experience, nothing will be seem better till a leaky gut is healed. I found a gluten-free/allergen free vitamin/mineral place online at kirkmanlabs.com. I still use their Lactobacillus Acidophilus probiotics because dairy use to be a bigger issue for me when I discovered my gluten-intolerance also. So my doctor's suggestion of eating yogurt was not helpful. But I would take the pills in the morning and at night, both, for a few weeks. After awhile, I felt better and my digestion was clearly getting better. I would also make sure all your vitamins and such ARE glutenfree. As for the kale chips....did you use olive oil or spray oil? Did you know some spray oils have wheat in them?? Check yours. I suspect you are missing glutens and other foods that have become a bother to you. When I first started making my list...it seemed to go on and on. I ended up with a list of glutens, dairy, nuts, eggs, beans, rice. IN TIME, I have gotten the eggs back, SOME dairy with the help of lactose-free milk, SOME rice and SOME beans. The glutens and nuts seem to be my mainstays. Keep looking at your ingredients on EVERYTHING. ALL the time! Also look for those magic words, "....processed in a facility that also handles....." . THAT tells ME no-no. Best wishes!


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#6 gluteymommy

 
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Posted 16 October 2013 - 05:41 PM

bartful, my vitamin d is low which I found out through testing but I am unable to tolerate even a small amount, I'm not sure why so this is probably adding to my health issues. jstric, I know repeated glutenings(from things that are supposed to be safe) have been an ongoing issue for me. I am eating only whole foods now. Do you think the probiotics helped any leaky gut issues you had? Thanks!
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#7 Juliebove

 
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Posted 16 October 2013 - 11:59 PM

I was diagnosed with Fibromyalgia.  I know some will dispute this but I believe it is only a symptom.  In my case it was a thyroid symptom.  Mine was at the worst when I was hyperthyroid and I was hyperthyroid only because my idiotic Endo. kept me on a high dose of thyriod meds that as it turns out, I did not need.

 

I still get the occasional Fibro flare but it is not nearly like it used to be.  Used to be a full two weeks at least to get over it.  Now maybe 2-3 days.  And if I am careful and don't overdo anything, I won't get the flare.  But for me it is super easy to overdo.  I can't do much at a stretch and I must sit down, rest and have a cold drink. 

 

I still do have one Fibro symptom and that is a reset body clock.  I stay up all night and go to bed in the morning.  Thyroid is not perfect.  I still do have a goiter.


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#8 dilettantesteph

 
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Posted 17 October 2013 - 03:30 AM

I think that I am also sensitive to extremely low levels of gluten.  So is my son.  I can't believe all the things to which I react.  Could all those things really be contaminated?  Yet, when I grow them myself in my garden, I don't react.  Certain items I can still buy.  I freeze and can and grow.  I read recommendations for items that other sensitive people say that they tolerate and try those.  I try to introduce new items by trying a very small amount the first time.  Then I wait a couple of days and try more if I tolerated it.  Then I have it every day for a week.  Every once in awhile I actually find a new food that works.  Other than that, I keep adding garden beds.  It may be crazy, but it works.  I'm doing great these days except for when I try something new.


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#9 jststric

 
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Posted 17 October 2013 - 08:38 AM

Yes, the probiotics, taking high doses over a period of time, healed my leaky gut. The type I take are "3.0 Billion CFU's per capsule". I took one in the morning and one at night. I still take them. I've read that gluten issues "leech", or suck, vitamins/minerals and our "villi" is always going to be struggling to keep up. Vit. D is one of those. I'm not at all an outside kind of person, so I take extra D in pill form. But they say 10 minutes in the sunlight is good for a day's D. And I help my "villi" by taking the lactobacillus acidophilus. I would suggest the next time you go to the doctor and have blood drawn to ask them to do a work up on your vitamin/mineral levels and then find ways to boost those. 

 

One more question....I went back and scanned your post again. Is there, by chance, a non-glutenfree person in your household? I'm the only gluten-intolerant person in my household (at the moment). MOST of my cooking is just whole foods, naturally glutenfree. But occasionally I fix things that I do both....glutenfree AND normal. Like spaghetti nights or something. And they do for themselves all the time in MY kitchen, lol. They TRY hard to be aware but I've seen them lapse in remembering things I need for a non-contaminated work area. So I'm vigilant about washing down my counters and surfaces they touch A LOT. 


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#10 gluteymommy

 
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Posted 17 October 2013 - 01:01 PM

Thanks everyone! Dilettantsteph, I know I am super insanely sensitive and I'm starting to accept that I cannot eat processed foods at all. I think even the few I was eating have kept me ill all of these years. Also cc in rice perhaps? Jstric, good to hear about the probiotics, I will be researching which ones I can take. Thanks again
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#11 dilettantesteph

 
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Posted 18 October 2013 - 04:31 AM

I think that I am having problems with cc in rice.  I might just have a problem with rice, but it is less severe when I wash it like crazy.  I did better with rice from Thailand, but still had symptoms.   I have another rice coming from another source next week and I'm keeping my fingers crossed.

 

The probiotic I take is Align and it's discussed here: http://www.celiac.co...t-side-effects/

There is an actual study, though small,  to show that it is effective and it doesn't gluten me.

 

Insanely sensitive is a good way to describe my level of sensitivity too.


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#12 gluteymommy

 
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Posted 19 October 2013 - 05:23 PM

Thanks, For the recommendation about Align: )
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#13 foam

 
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Posted 19 October 2013 - 06:46 PM

gluteymommy, just about vitamin D. Vit D is one of the major factors in balancing your immune system (T cells). The problem is if you take bulk amounts of Vitamin D it will push your immune system towards the inflammatory side almost instantly and it'll keep doing that until you have enough vitamin D to balance the T cell maturation. I find real sunlight to be much more tolerable so try if you can to do proper sunbathing and get your levels up as high as possible doing that. Then after that top up with the supplements.

 

Sunlight will also help greatly with your itching and general breaking down of toxins. Lack of vitamin D is also the major cause of depression so all up I think that's where you need to put your focus first. 


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#14 cyclinglady

 
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Posted 20 October 2013 - 03:57 PM

gluteymommy, just about vitamin D. Vit D is one of the major factors in balancing your immune system (T cells). The problem is if you take bulk amounts of Vitamin D it will push your immune system towards the inflammatory side almost instantly and it'll keep doing that until you have enough vitamin D to balance the T cell maturation. I find real sunlight to be much more tolerable so try if you can to do proper sunbathing and get your levels up as high as possible doing that. Then after that top up with the supplements.

Sunlight will also help greatly with your itching and general breaking down of toxins. Lack of vitamin D is also the major cause of depression so all up I think that's where you need to put your focus first.


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#15 dilettantesteph

 
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Posted 21 October 2013 - 05:47 AM

 

Sunlight will also help greatly with your itching and general breaking down of toxins. Lack of vitamin D is also the major cause of depression so all up I think that's where you need to put your focus first. 

 

Do you have a reference for sunlight breaking down toxins?


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