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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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