Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Almost A Year On Diet And No Results


  • Please log in to reply

31 replies to this topic

#16 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 27 March 2012 - 04:41 AM

@dilettantesteph: sorting buckwheat why? I just buy it straight from the shop in a plastic bags (they are safe). As for this sensitivity journal that thing never worked for me. Like one week I eat strawberries and I am fine, I do the pause for like 1 week and when I eat strawberries again I feel sick. And the story continues. No ideas why.

@pricklypear1971:
>You do realize most of the foods on your safe list are low salicylate

Appending to the fruit table - apples are moderate/low in salicylates. And Bananas have negligible amounts. Sorry, but this does not suit my symptoms at all.

@AVR1962: the moral of this story was there is no proven connection between bananas and acne (?) or I am missing the point.
  • 0

Celiac.com Sponsor:

#17 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 27 March 2012 - 04:53 AM

@dilettantesteph: sorting buckwheat why? I just buy it straight from the shop in a plastic bags (they are safe). As for this sensitivity journal that thing never worked for me. Like one week I eat strawberries and I am fine, I do the pause for like 1 week and when I eat strawberries again I feel sick. And the story continues. No ideas why.

@pricklypear1971:
>You do realize most of the foods on your safe list are low salicylate

Appending to the fruit table - apples are moderate/low in salicylates. And Bananas have negligible amounts. Sorry, but this does not suit my symptoms at all.

@AVR1962: the moral of this story was there is no proven connection between bananas and acne (?) or I am missing the point.


Yes, it does since they are cumulative. Sals are tricky things. I'm not saying it IS salicylates but it's something to consider. Some people are sensitive to one sal source but not another.

Sorry I bothered you, won't do it again.
  • 0
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!

#18 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 27 March 2012 - 04:58 AM

@pricklypear1971: hey thanks for help I really mean it, I didn't want to sound harsh or something. If I did I'm sorry :(
  • 0

#19 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 27 March 2012 - 12:07 PM

@dilettantesteph: sorting buckwheat why? I just buy it straight from the shop in a plastic bags (they are safe). As for this sensitivity journal that thing never worked for me. Like one week I eat strawberries and I am fine, I do the pause for like 1 week and when I eat strawberries again I feel sick. And the story continues. No ideas why.

I'm not sure what you didn't understand about my post:

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

Did you not read it carefully, or do you not understand why you would want to remove gluten grains?

Do you keep track of where the strawberries come from? That might be the difference. One source might be problematic and another one might not. There is also a cumulative effect as mentioned by someone else, in which case you may need to consider more than one food as causing a problem.
  • 0

#20 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 27 March 2012 - 12:16 PM

dilettantesteph: sorry I'm lost, I have no idea what means to sort buckwheat. I just buy it bagged and there is a sign on the package 100% gluten free.

Regarding the strawberries I just buy it from a farmer typically. I'm trying to avoid those from big shops like walmart etc*

Maybe I should focus on repairing my digestive tract - like by supplementing l-glutamine or something?
  • 0

#21 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 28 March 2012 - 04:06 AM

dilettantesteph: sorry I'm lost, I have no idea what means to sort buckwheat. I just buy it bagged and there is a sign on the package 100% gluten free.

I did see you say something about a translator. Maybe there is a language problem. Where do you live? Farmers grow many grains in rotation. Sometimes they use the same equipment for different grains and they can get mixed up with each other a bit. I look through my grains and pick out stuff that doesn't belong. I find stems, small pebbles, and other grains like corn and wheat in stuff like buckwheat and sorghum. While the grain itself is 100% gluten free, the contents of the package are not always 100% gluten free. The amount is small enough not to bother many celiacs, but the more sensitive among us may need to remove this extra material.
  • 0

#22 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 28 March 2012 - 07:33 AM

Ok now I understand. I'm from Europe and I'm not native english speaker sorry. Actually the buckwheat that I'm buying is recommended by local glutenfree society so I doubt this is the problem. Right now I have started supplementing with l-glutamine, probiotics and colostrum. I wonder if there will be any result...
  • 0

#23 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 29 March 2012 - 03:38 AM

Some celiacs are sensitive to lower levels of gluten than others. I am one who is sensitive to extremely low levels. I didn't get better on the gluten free diet either at first. The recommendations of celiacs did not work for me. The people making the recommendations were celiacs who responded to more "normal" levels of gluten. I had to take extra precautions before I could get better. Sorting and washing my grains was one of those extra precautions. You may not be getting better because you are sensitive to lower levels too.

My father isn't a native English speaker either. No need to apologize!
  • 0

#24 beachbirdie

 
beachbirdie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 652 posts
 

Posted 31 March 2012 - 10:22 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?


Have your doctor test both your total IgA and total IgG. You could (though it's rare...one in 60,000 to one in 100,000 depending on who you ask) have an immune condition that damages villi in the same manner of celiac, but does not respond to a gluten-free diet.

A shot in the dark, but tests are not that expensive and it could be an answer.

Were you, by chance, IgA deficient when you had celiac bloodwork? If so, I'd REALLY pursue the IgG testing.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#25 cavernio

 
cavernio

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 428 posts
 

Posted 02 April 2012 - 12:27 PM

When was the last time you went for a check-up?
I suspect the celiac disease was diagnosed correctly, but you could have other health problems. Maybe you have a parasitic infection, or candida, or small intestinal cancer or lymph node cancer. There's a whole slew of health problems that are more likely to be seen with celiac disease.
Or maybe you aren't getting enough other nutrients...your diet is very small. B12 is only 1 vitamin of many.
Have you tried putting dairy back into your diet yet?
  • 0
diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#26 T.H.

 
T.H.

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,816 posts
 

Posted 02 April 2012 - 01:09 PM

So sorry to hear that you are having such a tough time!

For your current diet, do you always eat the same brand of food, or source from the same farm? If you do, how well do you do if you try another brand or farm source for your apples/chickens/eggs and so on?

For the other foods that you have tried, have you tried multiple sources/brands, or only one?

I ask because something I've run across is reactions to common additions TO the foods that I was eating. I was down to a <10 foods diet, as well, and it took forever for me to figure some of it out (still not there all the way). A coating that is on most citrus. An anti-bacterial wash commonly used on types of meat. A pesticide (organic or conventional) used on the produce.

If you can eat multiple brands of all your safe foods, that's often a good clue that it's the food itself which is good for you. Or in other words, it's not an additive or contamination that you are avoiding by eating that food.

If some brands of your safe food make you sick, then it can be a good clue that there is something being added to food or coming into contact with it that is making you sick. Now, you'd need to check this with your 'bad' foods too, because some additives or cc risks are only associated with certain foods, yeah?

If you can find sources of veggies/fruit, maybe at a farmer's market, where you can know what the produce does and doesn't come into contact with, it might at least help you narrow down the problem so you can know for certain if it is the produce itself that is the issue or if it's something else contacting it.

Meats, grains, and beans are often more of a challenge, but can still be done.

One thing that has also helped me with my health detective moments has been to start a garden, without soil additions, and try to grow a food I wanted to add to the diet. If, grown in my own yard with native soil and no additions, I can eat it and be safe, then great. If it makes me sick, then it is something inherent in that item that makes me sick, like the food itself, high fructose levels, salicylates, whatever.


Another issue you may be experiencing right now is vitamin deficiencies, as I think a few have already said. Aside from feeling crummy and general overall health, this can also affect how you react to foods. As an example, if you don't get enough molybdenum (or aren't absorbing it), you don't make something called molybdenum cofactor, which is needed to create certain enzymes. One of these enzymes (sulfite oxidase) is used to change sulfites to sulfates in the body, and is also part of the pathway to get sulfur eventually changed to sulfate. In this case, sulfited food plus grapes, onions, garlic, cabbages, many meats (and tons of other foods) and even some bottled waters would make you react.



Good luck to you.
  • 0

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


#27 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 04 April 2012 - 09:37 PM

beachbirdie:
Do you mean the blood test for antibodies of celiac disease? If so I had them and they were negative (two times)
I also did the Igm, IgG for allergies or something they were also good. I only had one biopsy this was an experience I don't really want to repeat again...


cavernio: that sounds reasonable, although I'm not really sure how i can test for candida. On the other hand I
m still on "candida-free-alike-diet". I'm taking multivitamin but without much effect. What can you recommend in this case?
And after eating dairy my head gets heavy and I don't feel well.



T.H:
Mostly same brand. But for apples I just go to the local shop and I have no idea where they really come from, same with chickens and meat.
Are you eating any supplements? I'm currently trying digestive enzymes but without much luck. Anyway this "brand" thing seems interesting. Too bad this all eco-food is so expensive.


Thank you all for the support! you are great!
  • 0

#28 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 29 July 2012 - 09:13 AM

This month I was only eating chicken and watermelon and I still don't feel good. I think I'm missing something big time because with all this gluten-free diet I should have results already :(
  • 0

#29 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 29 July 2012 - 10:37 AM

This month I was only eating chicken and watermelon and I still don't feel good. I think I'm missing something big time because with all this gluten-free diet I should have results already :(


If all your eating is chicken and watermelon I am not surprised you aren't feeling good. Can you add maybe some potatoes or rice and some other fruits and veggies in?
  • 0
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)

#30 eazyeazy

 
eazyeazy

    Community Member

  • Advanced Members
  • PipPipPip
  • 31 posts
 

Posted 29 July 2012 - 10:55 AM

If all your eating is chicken and watermelon I am not surprised you aren't feeling good. Can you add maybe some potatoes or rice and some other fruits and veggies in?



Well I did it especially to test if I'm being glutened or something. I feel even worse when I add potatoes and rice. Eating gluten free sweets for example = bad stomach pain and toilet mode.
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: