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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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    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
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      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
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