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Ive Lost Everything


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#1 jay88

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Posted 24 May 2011 - 08:29 AM

I knew it was coming as my health has really deteriorated my girlfriend has decided to leave me after 5 years. she sed I look like death, skin and bones im now 9stone 126 pounds i used to be 168 pounds ive become disconnected from the world my brain fog has become really bad i have horrible mood swings and im really irritabile and never relaxed.

I am starting to lose the one thing that has got me this far in life HOPE :( my doctor doesnt listen to me anymore he is very dismissive and he thinks im just depressed.

I will never give up on finding out what has made me this ill i have hit rock bottom and i have nothing to losei have been ill from a very young age i was blessed with good health I was blessed with trying to find it :)

I am strictly gluten free, I also have reactions to dairy, tree nuts, soy, sugar, eggs corn wheat.

Does anyone else have nuero symptoms like me and has anyone been tested for mercury poisoning as i have 4 huge dental analgams since childhood i think this is my next step?
  • 0
Gluten, Egg, Diary free Aug 10
Shellfish free Nov 11
Orange free Feb 11

Very Ill as a child, chronic insomnia from the age of 6. Servere brain fog and headaches from age of 17. Paid £100 for an IgG food antibodies test in August 2010 started food log Feb 2011

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#2 SarahJimMarcy

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Posted 24 May 2011 - 09:07 AM

Have you seen a rheumatologist? How about an MD/ND? Keep trying. Find a new doctor and create a new door to walk through.
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Daughter diagnosed with celiac via endoscopy, April, 2011.
Mom, Dad and daughter all go gluten free.
We live in the Twin Cities, MN.

#3 IrishHeart

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Posted 24 May 2011 - 10:19 AM

I had all the same symptoms you list and dozens more. I truly hear your pain in your words.

Do NOT despair. Your continuing symptoms, given the fact that you are gluten free since last August, suggest possible nutritional deficiencies. Are you sure you're not still ingesting gluten somehow?

You may be severely anemic. B-12, folate and iron deficiencies are quite common in celiacs and I suggest having those tested immediately. They are often the cause for mood swings and depression and insomnia. Also, low vitamin D levels will leave someone depressed and feeling "foggy".

If your doctor will not listen, you need to find a new one and fast! It took me 3 years to get a proper diagnosis. Your symptoms need to be taken seriously, hon.

Do not give up hope!!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 rgarton

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Posted 24 May 2011 - 11:04 AM

I found out why i was losing weight so rapidly and its because i didn't have enough protein and my iron levels were rock bottom. I agree with everyone else definatly get a new doctor, you need to be taken seriously. I went through 5 doctors before i found mine and she got me diagnoses within 2 weeks and found my iron levels were really low and everything else. But with the new diet my protein isn't enough and that causes my low moods, dizziness, and most of all foggyness which i think can be seen as depression when actually i was just not feeling with it at all! There is always hope, it may seem like a long road but you will get there :)
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Lifes not waiting for the storm to pass, its learning to dance in the rain...

#5 jay88

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Posted 24 May 2011 - 11:18 AM

I had all the same symptoms you list and dozens more. I truly hear your pain in your words.

Do NOT despair. Your continuing symptoms, given the fact that you are gluten free since last August, suggest possible nutritional deficiencies. Are you sure you're not still ingesting gluten somehow?

You may be severely anemic. B-12, folate and iron deficiencies are quite common in celiacs and I suggest having those tested immediately. They are often the cause for mood swings and depression and insomnia. Also, low vitamin D levels will leave someone depressed and feeling "foggy".

If your doctor will not listen, you need to find a new one and fast! It took me 3 years to get a proper diagnosis. Your symptoms need to be taken seriously, hon.

Do not give up hope!!


Thank you so much for the useful information! I admire your resiliance and determination and my heart goes out to you in finding the cause of this debilitating problem :( I have so many dreams of living healthy and enjoying life and it is upseting that i divert all my energy into overcoming my health problems! I have been supplementing calcium vitamin b complex magnesium vitamin D im weary of them as they contain maltodextrin or dextrose at the moment im not supplementing Iron which i will start doing from tomorrow and im going to do a full clear out of my kitchen knifes, forks pans are all getting replaced! Have you not considered heavy metal poisoning for your problems? all my research is leading to Stress, Candida Leaky Gut or heavy metal poisoning all of which im going to addressing one by one until ive found what is causing my body so much distress!
  • 0
Gluten, Egg, Diary free Aug 10
Shellfish free Nov 11
Orange free Feb 11

Very Ill as a child, chronic insomnia from the age of 6. Servere brain fog and headaches from age of 17. Paid £100 for an IgG food antibodies test in August 2010 started food log Feb 2011

#6 IrishHeart

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Posted 24 May 2011 - 11:54 AM

Thank you so much for the useful information! I admire your resiliance and determination and my heart goes out to you in finding the cause of this debilitating problem :( I have so many dreams of living healthy and enjoying life and it is upseting that i divert all my energy into overcoming my health problems! I have been supplementing calcium vitamin b complex magnesium vitamin D im weary of them as they contain maltodextrin or dextrose at the moment im not supplementing Iron which i will start doing from tomorrow and im going to do a full clear out of my kitchen knifes, forks pans are all getting replaced! Have you not considered heavy metal poisoning for your problems? all my research is leading to Stress, Candida Leaky Gut or heavy metal poisoning all of which im going to addressing one by one until ive found what is causing my body so much distress!



Oh boy, you sound like me...determined to figure it out...and that is a good thing, except it creates more stress and you do not need that. A few words of advice (I learned the hard way)

(1) DON'T start taking iron unless you need it. You need to know IF you are deficient first. Anemia is caused by a B-12 deficiency, a folate def. OR iron def. You need to know what you are dealing with. Plus, dosing with iron will cause constipation---that is the LAST thing you need! :(

(2) Maltodextrin and dextrose are gluten free. At least in this country they are.
The label on any good vitamin should clearly indicate "wheat AND gluten" free.
Check the vitamins. If you are not sure of the ingredients, look at the list of foods that are gluten free before tossing them out.

here is a link:
http://www.celiac.co...ents/Page1.html

(3)There's no need to replace your forks or knives.
Pots and pans that are scratched are of concern--anything with pits, cuts, grooves. Also, wooden cutting boards, wooden utensils, any strainers or colanders and toasters should be replaced.

(4)Please hear me out. I spent thousands of dollars on supplements and 3 years researching all this--leaky gut, candida, heavy metals, blah blah blah..and nothing helped until I stopped the gluten attack.
Start with the basics before you worry about teeth amalgams.
Is every single thing you eat absolutely gluten free?

(5)Consider taking probiotics. They work wonders in "leaky guts" and balance the gut flora, crowd out yeast and reduce inflammation in the gut. I am not kidding...they have helped me immensely!
read this please:

http://www.thefooddo...probiotic_facts

(6). Are you getting enough protein? This is ESSENTIAL.
(7) If you are having digestive issues still, digestive enzymes might help.

(8) as difficult as it is, try to stop stressing. You are right...stress depletes the adrenals and the body.

Once I started the probiotics and the digestive enzymes, and addressed the vitamin deficiencies, I started to heal and the fog has lifted and I gained some weight and things are going in the right direction.
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 RollingAlong

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Posted 24 May 2011 - 03:20 PM

I wouldn't worry about your fillings yet.
Consider B-12 and other supplements in a sublingual form (under the tongue)
Get some sun if at all possible

Look into the Paleo diet.

What kinds of things have you been eating?
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#8 jay88

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Posted 27 May 2011 - 02:24 PM

I have fasted for 2 days and my brain fog has 80% gone! what does this mean?

I normally eat lamb turky, sweet ,spinach, brocolli, carrots, garlic, sprouts

I have large meals and I eat really fast finish a large meal in 10 mins I cant slow down, its a bad habit ive had since childhood. I wonder if thats my problem! I have eaten lamb and spinich today and my brain fog is back!

im in a bad way these days im watching my life waste away im really skinny I cant look at myself in the mirror I have tests lined hair mineral analysis, parasite screening and bacteria balance in the gut. I used to be a sporty active person who got top grades in school and now im just a weak 23 year old with a low exercise intolerance and even remember my telephone number which ive had for years due to this brain fog. :(
  • 0
Gluten, Egg, Diary free Aug 10
Shellfish free Nov 11
Orange free Feb 11

Very Ill as a child, chronic insomnia from the age of 6. Servere brain fog and headaches from age of 17. Paid £100 for an IgG food antibodies test in August 2010 started food log Feb 2011

#9 mushroom

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Posted 27 May 2011 - 02:41 PM

Spinach is a food that is high in salicylates, and many celiacs have problems with salicylates which are found in lots of vegetables and fruits and in other foods.

I have posted a link below to foods that contain salicylates. You might try avoiding them and see if you notice an improvement. Just a thought because I have a sister who has problems with them (and this includes aspirin which is salicylalic acide) :o

http://salicylatesen...out/food-guide/

Salicylate Sensitivity


Food Guide

Welcome to the Salicylate Food Guide. This list has been composed out of many lists from a variety of sources and I hope that it will be a complete and helpful guide to you. However, you will notice that some foods are not on the list. If there is something missing from the list it is because it has not been tested for salicylates or there was not enough complete evidence suggesting which category it should go under. I recommend that you avoid items that are not on the list as they may contain salicylate, especially during the elimination diet. After doing the elimination diet you can try out foods not on the list to see if they cause a reaction for you, but I would recommend doing this with caution and under the supervision of a doctor/specialist as anaphylactic shock can occur from introducing too many salicylates into your system at once.

I hope this Food Guide is helpful to you. If you find yourself overwhelmed by how many things contain salicylates and how few things there are that have negligible/low amounts of salicylates check out our Recipe Page for helpful recipes made only from things in the negligible and low......
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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

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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

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#10 IrishHeart

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Posted 28 May 2011 - 05:36 AM

I think that the SA idea is worth investigating but I also think fasting is not necessarily wise for you right now, Jay!

I know you told me you did the testing, but I also wonder if you are just having trouble DIGESTING fats. Lamb is not usually a problem food, but it may be too much for you right now. HYDRATE--lots of water. You may be dehydrated--that causes brain fog too.

Try simple, plain food. Rice. Boiled chicken. You need to eat.

Hang in there, kiddo. When did the doctor say she would get back to you with the results?
  • 2

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 Syl

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Posted 30 May 2011 - 07:33 PM

Don't give up bud, hold on to HOPE as tight as you can. I am only 24 years old myself and in the exact same situation. I know all too well how depressing it can be, but it DOES get better, and like many of the great people on these boards have told me - celebrate the small victories, don't dwell on the losses! This community is a wonderful support group and chock full of amazing knowledge. I know I can't make it alone, nor do I expect you to, so continue to reach out and there will be a helping hand to guide you!

There are many things that should be looked into like vitamin levels, candida overgrowth, leaky gut, all that jazz, but I think what's most important is exactly what Irish Heart said - take that advice to heart. The best thing I can recommend to you right now is what I'm currently doing for myself, finding other food intolerances with a rotation diet. There are a couple really great books out there that can help with this process like the one I'm currently reading "The Ultimate Food Allergy Cookbook and Survival Guide" by Nicolette M. Dumke. If you have a local library try to pick it up, it gives great recipes, facts, and advice on how to overcome hidden food allergies and intolerances. Gluten might not be your only problem as it most certainly isn't the only culprit in anyone who's just starting to heal.

My thoughts are with ya, hang in there!
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#12 dilettantesteph

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Posted 31 May 2011 - 04:09 AM

I seem to react to pesticides. I need to get my produce from select sources. Meat I get in big cuts wrapped at the food processors. The store can't guarantee absolutely gluten free if it is cut there because they do various breaded meats too. It sounds like you are already eating a whole foods diet (produce and meat) which is what I'd recommend. Are you using spices? Some super sensitive celiacs like me have problems with processed spices. I grow my own. I hope you get this figured out soon.
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#13 Korwyn

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Posted 31 May 2011 - 08:26 AM

I knew it was coming as my health has really deteriorated my girlfriend has decided to leave me after 5 years. she sed I look like death, skin and bones im now 9stone 126 pounds i used to be 168 pounds ive become disconnected from the world my brain fog has become really bad i have horrible mood swings and im really irritabile and never relaxed.

I am starting to lose the one thing that has got me this far in life HOPE :( my doctor doesnt listen to me anymore he is very dismissive and he thinks im just depressed.

I will never give up on finding out what has made me this ill i have hit rock bottom and i have nothing to losei have been ill from a very young age i was blessed with good health I was blessed with trying to find it :)

I am strictly gluten free, I also have reactions to dairy, tree nuts, soy, sugar, eggs corn wheat.

Does anyone else have nuero symptoms like me and has anyone been tested for mercury poisoning as i have 4 huge dental analgams since childhood i think this is my next step?



Jay, have you been tested for Lyme disease? You remind me of a guy who came to our GiG meeting last year. He finally got diagnosed with Lyme disease as well as celiac disease and is finally starting to heal up. Lyme disease can present the same way that celiac disease does. If you compare the list of most common 75 symptoms of celiac disease and Lyme, it is pretty much the same list. There is a thread on the forums here about Lyme. If you do get a test, make sure it uses the Western Blot. If your Dr. won't test you at this point, you need to find a Dr. who will.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(


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