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Almost A Year On Diet And No Results


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31 replies to this topic

#1 eazyeazy

 
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Posted 26 March 2012 - 07:59 AM

Hello,

I have been on gluten free/diary free diet for almost a year now. The only positive effect that I see is the lack of stomach issues but it may be related just to the healthy food I'm eating. Which right now is: apples/tuna/wheatgrass(gluten free)/chicken/eggs. These all the only things I eat. Anyway long story short I still have perioral dermatitis/acne and besides that I don't feel really well. Is there any possibility I have been misdiagnosed?
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#2 Skylark

 
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Posted 26 March 2012 - 08:42 AM

How were you diagnosed?

Also, how have you determined that the wheatgrass you are eating is gluten-free? Is it independently certfied as gluten-free? There could easily be enough gluten contamination in wheatgrass to keep you from recovering.

Also, diets that severely limited often lead to deficiencies that can keep you from feeling well.
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#3 ravenwoodglass

 
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Posted 26 March 2012 - 08:46 AM

First you need to drop the wheatgrass. Neither it nor barley grass is really safe.
If that is all you are now eating you are most likely lacking nutrients also. You may want to ask your doctor to refer you to a nutritionist to help guide you into a more rounded diet.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 AVR1962

 
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Posted 26 March 2012 - 08:54 AM

Hello,

I have been on gluten free/diary free diet for almost a year now. The only positive effect that I see is the lack of stomach issues but it may be related just to the healthy food I'm eating. Which right now is: apples/tuna/wheatgrass(gluten free)/chicken/eggs. These all the only things I eat. Anyway long story short I still have perioral dermatitis/acne and besides that I don't feel really well. Is there any possibility I have been misdiagnosed?

Hang in there! I am 2 weeks shy of a year on a gluten-free diet myself. I have had all kinds of crazy things to deal with in this last year and have been to the doc too many times trying to figure out if there is anything else wrong. Besides a bulged disc in my back they have found really nothing to speak of. I can't make sense of it either.

I would assume to dx was good. It could be that you just need more time. It has only been recently that I ahve been able to eat gums like xanthan again. I still cannot eat dairy without a lactose supplement. How does your stomach feel....any burning? Where are your vit levels? It's incredible how much nutrients had have had to feed back body to get my life back.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#5 eazyeazy

 
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Posted 26 March 2012 - 08:55 AM

Hello,

I had a biopsy - damaged villi - 2 Marsh scale. As for the wheatgrass sorry my translator returned the wrong name -> I'm eating buckwheat not wheatgrass. The box says it is 100% gluten free.

As for vitamins levels it is hard to say because such tests are very expansive but I had D3 vit testes it is ok. Same for B12 right now. My blood results are ok.
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#6 Skylark

 
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Posted 26 March 2012 - 09:11 AM

Where are the vegetables in your diet?

I usually follow the Specific Carbohydrate Diet and it helps a lot with how I feel, my asthma, and my perioral dermatitis/rosacea. http://breakingtheviciouscycle.info
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#7 eazyeazy

 
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Posted 26 March 2012 - 09:22 AM

@Skylark: I found out that by eating something different my acne increases. Plus after some vegetables I have gas and stomach issues. Same for fruits like grapes or water melons.
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#8 Skylark

 
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Posted 26 March 2012 - 09:26 AM

You may have fructose malabsorption. Grapes, watermelon, and some vegetables are high in fructose. See if you can tolerate low fructose vegetables like zucchini, spinach, chard, and butternut squash. :)

http://www.livestron...-malabsorption/

With Marsh 2 and your stomach symptoms going away gluten-free there isn't much doubt about celiac.
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#9 eazyeazy

 
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Posted 26 March 2012 - 09:48 AM

@Skylark: well I was thinking about it but few things are not really right. Like I should be able to eat bananas but even after eating small amount of it I feel terrible and my skin breaks out. No such problems with apples - which are considered high in fructose. So what is going on?
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#10 pricklypear1971

 
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Posted 26 March 2012 - 10:16 AM

Well, banana reactions are associated with latex allergy...

Have you considered salicylate intolerance? It's cumulative which may make it hard to figure out. http://salicylatesensitivity.com/

Lectin intolerance is another one you hear about http://www.krispin.com/lectin.html
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#11 NutritionalCeliac

 
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Posted 26 March 2012 - 03:22 PM

I think your best bet is to get further testing for other food intolerances and allergy tests may be of use as well. I had no idea that something such as oranges for example bothered me, but you'd be suprised what all you can learn about yourself. For a long time even though I was gluten free, I was still getting sick and having various symptoms without discovery the reason. A lot of times there are other things which may irriate or bother you. I have recently taken the (Company Name Removed - They Spammed This Forum and are Banned) test which tests for food intolerances, molds, chemicals, and other additives. It really helped me realize what else could be bothering me and after elimination of certain foods or reducing how often I eat them, and exchanging them for other things I found myself feeling even better than before. If this test is too expensive I'm sure there are other ways to test for food intolerances. I personally know that green beans bother me slightly, etc. and determining whether or not you have a problem with something specific such as sucrose etc. its probably best to get a really excellent test, which tests a multitude of areas.
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gluten-free
Dairy F
Soy F
Egg white F
many more specific foods Free lol

#12 eazyeazy

 
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Posted 26 March 2012 - 08:47 PM

Hello,


Well I have already spent like a ton of money on allergic tests etc. and appending to them I have no food allergies. I have allergy to dust and that is all. After all those years jumping from one doctor to another, trying different diets - all of this this became really tiring :(
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#13 AVR1962

 
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Posted 26 March 2012 - 08:57 PM

@Skylark: well I was thinking about it but few things are not really right. Like I should be able to eat bananas but even after eating small amount of it I feel terrible and my skin breaks out. No such problems with apples - which are considered high in fructose. So what is going on?

This could possibly help address the issue http://www.highonhea...-give-you-acne/
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#14 pricklypear1971

 
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Posted 26 March 2012 - 09:18 PM

Hello,


Well I have already spent like a ton of money on allergic tests etc. and appending to them I have no food allergies. I have allergy to dust and that is all. After all those years jumping from one doctor to another, trying different diets - all of this this became really tiring :(


Intolerances wouldn't show up on allergy tests.

You do realize most of the foods on your safe list are low salicylate??? That might be a hint.

There's a high correlation between Celiac/skin conditions and salicylate sensitivity.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#15 dilettantesteph

 
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Posted 27 March 2012 - 03:18 AM

I think that you will need to start a food/symptom journal. Try eliminating things which might be a problem and adding things which should be safe. Only make one change per week as it can take awhile to notice symptoms. Something in your diet might be contaminated, or you could be having problems from lack of nutrients due to lack of variety. The complete lack of vegetables seems like a problem to me, especially green veggies. I'd try to get some of those added first. Some of us are more sensitive to cc than others. It takes some of us quite awhile to figure out a safe diet. Stick with it and be patient. It will be worth the effort.

Also, do you sort your buckwheat? I have found gluten grains in my 100% gluten free grains before. Now I sort and wash first.
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