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Gluten related bo?


V123

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V123 Apprentice

Hi,

I have undergone an endoscopy and was found that I do not have celiac.

However, I had positive marker (IGG) and vitamin d deficiency tests. 

I am wondering if anyone has ever done a 23andme test and if they are a good idea

I really want to cut gluten out of my diet already, since I have many horrible symptoms (including fecal BO) and want to try to relieve them

But I have an appointment with a (sorta) wholistic dietician— not for another 5 weeks (hopefully she is good considering 6 weeks earliest to get an appointment) 

My mom’s friend has ibs problems too, and she is currently going to the same dietician and is on this weird elimination diet (no dairy, gluten, and some enzyme that’s in a lot of foods)

My dermatologist is gluten intolerant and she went to the same dietician and was diagnosed through the elimination diet and hasn’t eaten gluten in 3 years

I do have a lot of things in place to get back to normal health, but I am really impatient 

Has anyone ever done an elimination diet similar to the one I will most likely have to do? It seems like I may have to do it but not positive 

And has anyone had experience with  fecal BO related to gluten?

Still not diagnosis of gluten problems and I am very anxious that the diet won’t releive symptoms and I will have to deal with all of these symptoms for much longer than I want to to get a diagnosis of anything

Any experience with any of the above ?


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cyclinglady Grand Master

Read this about the 23 and Me test:

Open Original Shared Link

About 30 to 40% of the population carries the genes that could develop into celiac disease.  I suppose you could get the genetic test, so that if negative, you will know that you will never get celiac disease ever!  But I would go through my doctor where there is more privacy and insurance will pay.    Even then, some insurance company could deny you health or life insurance because you have celiac genes even if you are healthy.  So, think about it carefully!  

You tested negative for celiac disease via endoscopy.  That is good news!  Consider trialing the gluten free diet as you may have Non-Celiac Gluten Sensitivity.  It can not hurt provided you try to eat healthier versions and not gluten free cookies or chips.  

 

Ennis-TX Grand Master

Fecal BO? Like a fecal like body odor? A odd or off smell from the body is often a sign of a intolerance to something and your body excreting stuff from the pores....If I eat meat with enzymes to help me digest it (without enzymes I can not eat meat) My body starts emitting the smell of something like cat pee and fish....really bad smell to the point I just said no and gave up eating turkey, chicken and lean longhorn. Fish oddly does not trigger the smell....my dietician said it was a sign my body had issues with it. Try keeping a food diary and doing a elimination diet with common foods like gluten, dairy, meats, legumes. for say a week at a time for each one and see if how it changes then reintroduce for 1-2 days and remove again noting changes. Might find links to a intolerance.

knitty kitty Grand Master

Open Original Shared Link

Thought this article may help.  It explains some reasons for body odor may be linked to vitamin or mineral deficiencies.  Malabsorption is common with Celiac Disease.  

I recommend the Autoimmune Protocol paleo diet.  Yes, an elimination is scary because one has to change one's mentality towards food...but the elimination of things irritating one's innards and the healing that can then take place is very much worthwhile.  

Hope this helps!

 

Jmg Mentor
14 hours ago, V123 said:

I really want to cut gluten out of my diet already, since I have many horrible symptoms (including fecal BO) and want to try to relieve them

But I have an appointment with a (sorta) wholistic dietician— not for another 5 weeks (hopefully she is good considering 6 weeks earliest to get an appointment) 

My mom’s friend has ibs problems too, and she is currently going to the same dietician and is on this weird elimination diet (no dairy, gluten, and some enzyme that’s in a lot of foods)

My dermatologist is gluten intolerant and she went to the same dietician and was diagnosed through the elimination diet and hasn’t eaten gluten in 3 years

I do have a lot of things in place to get back to normal health, but I am really impatient 

Hi :) 

youve had celiac testing and so I don't think there's any need to wait the 5 weeks to see this new clinician before trialling the gluten-free diet as long as you approach it in a methodical way by keeping a food journal. If you note what you eat and when and how you feel then by the time you have your appt you will already have some useful data for the new dietician to examine.

best of luck :)

matt

  • 4 weeks later...
Fedco11 Newbie

Hey V123 -  I have a similar BO problem. I've tried a lot of things including going on a gluten-free diet for the last month.  It has helped but it is not the culprit. This week I've started removing rice from my diet. Keeping a journal and recording impressions has to be done consistently because days impressions start to merge with one another. I have eliminated meat, dairy, soy -based products from my diet already with no improvements. A liver supplement based of a milk-thistle flower helped for some time, and still does but at a lower rate. I wish I could be more helpful. But I live in Canada and seeing an specialist for a chronic disease like this takes about 6-7 months !  I have my appointment in August.  it's ridiculous. It's like one needs to get a letter from the Queen to see doctor here. I had done a colonoscopy a year ago in Colombia [i'm colombian] but nothing wrong came up.  Let me know how your appointment goes!  good luck.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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