Fecal test

[Katerific]

I am 63 years old.  I have had watery diarrhea for weeks.  The first step at the doctor's office was a fecal test which showed no blood, but elevated WBC.  I'm scheduled for an endoscopy and colonoscopy, but can't get in until Sept 7.  I also have a HIDA scan for gall bladder tomorrow.  My mother was diagnosed with Celiac, so I suspect that is what I have.  I'm not sure though if the inflammation from celiac would cause elevated WBC in the stool.  Does anyone know?  Also, I eliminated all gluten a couple of days ago and am feeling better but I don't know if that will make it hard to diagnose at my endoscopy.  I read that it takes a long time for the intestine to heal, so 6 weeks might not be a problem.  

[knitty kitty]

It's recommended that gluten be included in the diet for a minimum of two weeks before endoscopy, and eight weeks before blood antibody tests for Celiac Disease.

Yes, a few weeks off of gluten can cause false negatives on testing.

 

[Scott Adams]

I agree, if you are going the testing route you should keep eating gluten daily--they actually recommend two slices of wheat-bread's worth.

Since you mother has this it does put you at a much higher risk for it.

[Katerific]

1 minute ago, Scott Adams said:

I agree, if you are going the testing route you should keep eating gluten daily--they actually recommend two slices of wheat-bread's worth.

Since you mother has this it does put you at a much higher risk for it.

I have severe reactions to more than crumbs of gluten.  1 slice of bread causes me to have vomiting and diarrhea that lasts hours.  The gluten I've eliminated is the smoke flavoring on smoked almonds and lunchmeat.  With that gone, the diarrhea is gone, but not loose stools.  I can't eat 2 slices of bread everyday without being really sick and unable to function.  It will be a problem getting a diagnosis for celiac I'm afraid.

[Scott Adams]

I'm not sure you need a formal diagnosis if you already know you can't have any gluten. Is there any reason why you're wanting an official diagnosis? Getting one can lead to higher private life and health insurance premiums...for life!

[Katerific]

9 minutes ago, Scott Adams said:

I'm not sure you need a formal diagnosis if you already know you can't have any gluten. Is there any reason why you're wanting an official diagnosis? Getting one can lead to higher private life and health insurance premiums...for life!

I have known I can't eat gluten for many years but started having daily diarrhea, sometimes severe for the last many weeks (actually months).  The fecal leukocytes indicate inflammation, so it could be IBD or microscopic colitis.  A person with celiac is more likely to also get microscopic colitis.  It seems unlikely eliminating smoked almonds calmed down the possible celiac this much.  True?  I'd like to know what is really wrong.

[knitty kitty]

@Katerific,

Yes, inflammation from Celiac will cause elevated leukocytes in the stool.  

The smoked seasoning and the luncheon meat probably contain a food additive called "meat glue" or microbial transglutaminase.  

Microbial transglutaminase is produced from microbes in a lab.  Meat glue is used as a flavor and texture enhancer.  Meat glue is used to stick things pieces of meat together like chicken nuggets, luncheon meat.  It is added to processed foods to enhance texture in yogurt and dairy products.  It is added to breads and other baked goods.  

Microbial transglutaminase acts the same in the Celiac body as tissue transglutaminase produced when exposed to gluten.  It causes inflammation and increases the autoimmune response.  

 

[Katerific]

19 hours ago, knitty kitty said:

@Katerific,

Yes, inflammation from Celiac will cause elevated leukocytes in the stool.  

The smoked seasoning and the luncheon meat probably contain a food additive called "meat glue" or microbial transglutaminase.  

Microbial transglutaminase is produced from microbes in a lab.  Meat glue is used as a flavor and texture enhancer.  Meat glue is used to stick things pieces of meat together like chicken nuggets, luncheon meat.  It is added to processed foods to enhance texture in yogurt and dairy products.  It is added to breads and other baked goods.  

Microbial transglutaminase acts the same in the Celiac body as tissue transglutaminase produced when exposed to gluten.  It causes inflammation and increases the autoimmune response.  

Thank you for the explanation.  Makes a lot of sense for my situation.

[Katerific]

7 minutes ago, knitty kitty said:

@Katerific,

Yes, inflammation from Celiac will cause elevated leukocytes in the stool.  

The smoked seasoning and the luncheon meat probably contain a food additive called "meat glue" or microbial transglutaminase.  

Microbial transglutaminase is produced from microbes in a lab.  Meat glue is used as a flavor and texture enhancer.  Meat glue is used to stick things pieces of meat together like chicken nuggets, luncheon meat.  It is added to processed foods to enhance texture in yogurt and dairy products.  It is added to breads and other baked goods.  

Microbial transglutaminase acts the same in the Celiac body as tissue transglutaminase produced when exposed to gluten.  It causes inflammation and increases the autoimmune response.  

 

My late mother was diagnosed with Celiac disease in 1990.  My sister remembered her saying Celiacs should avoid smoke flavoring and even gluten free oats.  Sis reminded me.  I had been eating Bob's Red Mill Gluten Free Oats, smoked almonds, smoked lunchmeat and also Liquid Smoke.   Since I am a whole lot better without those things in the last week, I think I found the smoking gun.

[knitty kitty]

I can't tolerate "smoked" stuff.  Apparently smoke flavorings have lots of Sulfites and I have a Hypersensitivity Type Four to Sulfites.  I cannot tolerate any sulfite containing drugs.  (And there's lots of them.) 

Some Celiacs react to the protein avenin in oats the same way as to gluten.  

Edited July 29, 2022 by knitty kitty
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[Katerific]

I had genetic testing for ancestry purposes at 23 and Me a few years ago.  My mother had Celiac and according to 23 and Me, I have a variant on the HLA-DQA1 gene, marker HLA-DQ2.5.  The genetic test, along with my improvement on a gluten free diet, is enough proof for me.  I still have an upper and lower GI scheduled for Sept 7.  I will still have it since I haven't had a colonoscopy in 11 or 12 years and I'm 63.  Throw in the upper GI while I'm out on the table since I have a lot of heartburn.  I have a question about some saying to do a gluten challenge.  If small intestine damage takes months or years to heal, why is a challenge necessary when the biopsy would only be 2 months after removing all gluten from the diet?  Wouldn't damage still be evident?  I'm a little lost in all this and am trying to figure it out without a doctor to ask.  My PCP isn't knowledgeable about celiac and referred me to a gastroenterologist who I haven't met yet.  First meeting will be at the GI procedures in 6 weeks.

[Kate333]

Hi Katerific.   Given your extreme symptoms if you eat a slice of bread, improvement with some diet changes, plus your family medical history, you probably don't need medical confirmation of the obvious: gluten is poison, and you need to avoid it.  However, your body won't heal by avoiding ONLY a few items like oats and smoked nuts.  celiac disease requires a lifelong STRICT gluten-free diet where you avoid ALL sources of gluten.   If you want some kind of official medical confirmation but (understandably) want to avoid further G consumption, then ask your doc for a simple TTG/IgA test (or buy a home blood test kit for $100 and do that at home).  Yes, your numbers may be lower than otherwise if you kept eating bread but given your extreme symptoms with even limited G consumption, the test numbers are pretty likely to be in the abnormal range. 

Just curious, when your mom was diagnosed more than 30 years ago, did her doctor back then ever discuss or recommend that you, your sister and any other close relatives get tested for celiac disease or the celiac disease gene or adopt strict gluten-free diets because of the strong familial genetic predisposition to celiac disease?  Not sure those tests were even available back then, but it's a shame you and your sister weren't diagnosed long before now. 

I hope you feel better soon.  

 

 

[Katerific]

2 hours ago, Kate333 said:

Hi Katerific.   Given your extreme symptoms if you eat a slice of bread, improvement with some diet changes, plus your family medical history, you probably don't need medical confirmation of the obvious: gluten is poison, and you need to avoid it.  However, your body won't heal by avoiding ONLY a few items like oats and smoked nuts.  celiac disease requires a lifelong STRICT gluten-free diet where you avoid ALL sources of gluten.   If you want some kind of official medical confirmation but (understandably) want to avoid further G consumption, then ask your doc for a simple TTG/IgA test (or buy a home blood test kit for $100 and do that at home).  Yes, your numbers may be lower than otherwise if you kept eating bread but given your extreme symptoms with even limited G consumption, the test numbers are pretty likely to be in the abnormal range. 

Just curious, when your mom was diagnosed more than 30 years ago, did her doctor back then ever discuss or recommend that you, your sister and any other close relatives get tested for celiac disease or the celiac disease gene or adopt strict gluten-free diets because of the strong familial genetic predisposition to celiac disease?  Not sure those tests were even available back then, but it's a shame you and your sister weren't diagnosed long before now. 

I hope you feel better soon.  

 

 

I had a gene test and am positive HLA-DQ2.   I am practically Mom's clone.  I also got her MODY diabetes (maturity-onset diabetes of the young) and macular degeneration.  When she was diagnosed her doctor gave no indication that it could be hereditary.  I just called my doctor's office to get the TTG/IgA test tomorrow.  Thank you for the suggestion.  I also sent a message to the GI doctor doing the GI scopes to find out if he wants me to do a gluten challenge.  Even if I can't tolerate it, I'm going ahead with the tests.  I haven't had a colonoscopy in 11 or 12 years, so should probably get it done at my age of 63.  I am almost back to feeling normal without all the cross-contamination and hidden gluten out of my life.  I thought of a huge cross-contamination I was getting.  Knowing I can't eat gluten, I unwisely made cookies and cakes for my 92 year old mother-in-law every week for the last 12+ months.  I'm sure handling flour, getting it all over my hands, mixer, utensils, kitchen towels, sponge and countertop made me so sick.  Another checkmark in the celiac box.

[Katerific]

I just got a call from my Doctor's office.  She said I would need to eat gluten for the next several weeks to have the TTG/IgA test.  During my last visit I told her I had been following a gluten-free diet but at that time had not identified my cross-contamination and hidden gluten foods.  The diarrhea stopped about 2 weeks ago when I cleaned up my environment and diet.  Since I had diarrhea for 12 months, and if it was because of a low level of gluten, would the TTG/IgA still pick up antibodies? I can go to Quest Labs to get the test without arguing with the doctor for $66 but am wondering if it would pick up antibodies in my situation.

[RMJ]

2 hours ago, Katerific said:

I just got a call from my Doctor's office.  She said I would need to eat gluten for the next several weeks to have the TTG/IgA test.  During my last visit I told her I had been following a gluten-free diet but at that time had not identified my cross-contamination and hidden gluten foods.  The diarrhea stopped about 2 weeks ago when I cleaned up my environment and diet.  Since I had diarrhea for 12 months, and if it was because of a low level of gluten, would the TTG/IgA still pick up antibodies? I can go to Quest Labs to get the test without arguing with the doctor for $66 but am wondering if it would pick up antibodies in my situation.

Unfortunately the answer is maybe.  If the Quest test is positive, it would give you your answer.  If negative, it might be because your antibody levels had declined once gluten was removed.  It took years for my antibody levels to all normalize, but some people recover much, much faster.

[Beverage]

On 7/28/2022 at 4:48 PM, Katerific said:

I had been eating Bob's Red Mill Gluten Free Oats, 

I got very sick on Bob's gluten-free oats, they may be near higher limit of gluten free.  I am able to eat "purity protocol" oats. I have been eating gluten-free Harvest brand with no issues.  Here's an article:

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

I was diagnosed with Celiac's without the endoscopy, based on 3 things:  1. high positive blood tests 2. positive DNA test  3. response to gluten free diet.

For me, that was enough to strongly commit to gluten free, but you know yourself, if you need the endoscopy to keep you on the right path.