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Did stool test—results show gluten sensitivity—also shows a gene that predisposes to gluten sensitivity and celiac disease and another “non-celiac gene” predisposing to gluten sensitivity—does “not” say I have celiac disease—by definition what is “celiac disease and what is difference to it & gluten sensitivity?

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Stool tests are not medically accepted for diagnosing celiac disease.  There is a lot of controversy over this, but only you can decide what is best for you.  
 

https://www.verywellhealth.com/enterolab-testing-may-identify-gluten-sensitivity-562956

To learn more about celiac disease and testing go here:

https://www.beyondceliac.org/celiac-disease/

I assume you suspect that gluten is causing you problems.  You can either pursue testing or trial the gluten free diet.  But in my non-medical opinion, it does help to work with a doctor to help rule out other things.  Would hate for something like cancer to be missed.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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On 7/19/2020 at 10:27 AM, cyclinglady said:

Stool tests are not medically accepted for diagnosing celiac disease.  There is a lot of controversy over this, but only you can decide what is best for you.  
 

https://www.verywellhealth.com/enterolab-testing-may-identify-gluten-sensitivity-562956

To learn more about celiac disease and testing go here:

https://www.beyondceliac.org/celiac-disease/

I assume you suspect that gluten is causing you problems.  You can either pursue testing or trial the gluten free diet.  But in my non-medical opinion, it does help to work with a doctor to help rule out other things.  Would hate for something like cancer to be missed.  

EnteroLab is who did test—plus he was head of Baylor’s gastro before starting this—showed gluten sensitivity in test and according to him—is far superior to blood test because according to him—shows up in stool well before blood—as for second part—have been working with regular doctors—the only thing “they” know to do is prescribe “pain meds” which I’m not planning on taking

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It sounds like you have done your homework.  Why ask your original question?  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Hi Chris,

Celiac disease is an autoimmune condition that causes damage to the body.  Often celiac disease attacks the GI tract but it can also attack many other body organs.  Gluten sensitivity is a broad term for reactions to gluten containing foods.  It does not involve an immune attack on the body.  The causes of gluten sensitivity may be unknown or partially known in some cases.  But an immune attack is not involved per current understanding.  Basically celiac disease is probably often a more serious condition than gluten sensitivity.  But because celiac testing is not perfect, sometimes people are told they have gluten sensitivity and not celiac disease.  So things can get muddied for the patients.

If you are still eating gluten you can get a celiac disease antibody panel done.  That is handy to do because you can get the levels of various antibodies and then later get tested again and check that they have declined after going gluten-free.

There are more people told they have gluten sensitivity than people told they have celiac disease.  It is good to know if you have celiac disease or "just" gluten sensitivity.  Celiac disease can cause nutrient malabsorption  which can cause many health problems by itself.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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15 hours ago, cyclinglady said:

It sounds like you have done your homework.  Why ask your original question?  

Because of my “trying to be sure & clear up confusion in my head”—gluten sensitivity kicking in at 67 seems strange to me(EnteroLab test also shows genes for probability)—doctors blamed my neuropathy for years on too much alcohol(never alcoholic but drank a lot)—quit and neuropathy actually started getting worse—knew something else was driving—my “chiropractic neurologist(in both worlds to eliminate competitive crap-which I’m tired of) had me do the test with “no” gut symptoms(am beginning to understand gut/brain/body relationship & is “REMARKABLE” to me how FEW “regular” doctors do) and results were gluten sensitivity and extremely high “fecal fat score”—went to gastro guy who tested for celiac by blood(EnteroLab was stool) and test came back negative—currently having EnteroLab do additional test for small intestine malabsorption vs pancreatic maldigestion—if body is “not” getting vitamins and nutrients to “all” parts then hopefully may have stumbled on to neuropathy cause and remedy—sorry that was long but it was still condensed

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9 hours ago, GFinDC said:

Hi Chris,

Celiac disease is an autoimmune condition that causes damage to the body.  Often celiac disease attacks the GI tract but it can also attack many other body organs.  Gluten sensitivity is a broad term for reactions to gluten containing foods.  It does not involve an immune attack on the body.  The causes of gluten sensitivity may be unknown or partially known in some cases.  But an immune attack is not involved per current understanding.  Basically celiac disease is probably often a more serious condition than gluten sensitivity.  But because celiac testing is not perfect, sometimes people are told they have gluten sensitivity and not celiac disease.  So things can get muddied for the patients.

If you are still eating gluten you can get a celiac disease antibody panel done.  That is handy to do because you can get the levels of various antibodies and then later get tested again and check that they have declined after going gluten-free.

There are more people told they have gluten sensitivity than people told they have celiac disease.  It is good to know if you have celiac disease or "just" gluten sensitivity.  Celiac disease can cause nutrient malabsorption  which can cause many health problems by itself.

Blood work came back that I did not have celiac—have extremely high fecal fat score—currently having test run for small intestinal malabsorption vs pancreatic maldigestion—if score was that high for fat then nutrients and supplements that I’m trying to get to body to remedy neuropathy(cause for this entire thing) are not getting there—have never had “any” gut problems(had a little when drinking & smoking-quit-it quit) or symptoms when starting this “gut” thing—chasing neuropathy cause! Gut/brain/body relationship is “big time”—am learning

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19 minutes ago, Chris Simmons said:

Because of my “trying to be sure & clear up confusion in my head”—gluten sensitivity kicking in at 67 seems strange to me(EnteroLab test also shows genes for probability)—doctors blamed my neuropathy for years on too much alcohol(never alcoholic but drank a lot)—quit and neuropathy actually started getting worse—knew something else was driving—my “chiropractic neurologist(in both worlds to eliminate competitive crap-which I’m tired of) had me do the test with “no” gut symptoms(am beginning to understand gut/brain/body relationship & is “REMARKABLE” to me how FEW “regular” doctors do) and results were gluten sensitivity and extremely high “fecal fat score”—went to gastro guy who tested for celiac by blood(EnteroLab was stool) and test came back negative—currently having EnteroLab do additional test for small intestine malabsorption vs pancreatic maldigestion—if body is “not” getting vitamins and nutrients to “all” parts then hopefully may have stumbled on to neuropathy cause and remedy—sorry that was long but it was still condensed

Ah, it sounds like you did not get a complete celiac blood panel.  Older people and small babies often test better on the DGP IgA vs. the standard screening TTG tests.  I should know, I test positive to only the DGP IgA.  I have neuropathy too.  No deficiencies.  It has improved by the diet.  All my autoimmune (have three) has improved on a gluten free diet. 
 

I would seriously trial the diet.  Know that neuropathies can take a long time to heal (if they heal at all).  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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2 hours ago, cyclinglady said:

Ah, it sounds like you did not get a complete celiac blood panel.  Older people and small babies often test better on the DGP IgA vs. the standard screening TTG tests.  I should know, I test positive to only the DGP IgA.  I have neuropathy too.  No deficiencies.  It has improved by the diet.  All my autoimmune (have three) has improved on a gluten free diet. 
 

I would seriously trial the diet.  Know that neuropathies can take a long time to heal (if they heal at all).  

I will ask nurse which test I took—how did you find out about autoimmune problems? Am on gluten free diet now—gastro guy wants me to go back on gluten 2 weeks prior to 8/18(scheduled for colonoscopy which is time for) when he will biopsy small intestines(which I assume will show for sure “gluten sensitivity”)—-doctor I am currently working with wants me to accept stool test results from EnteroLab and not return to gluten at all(by the way-stool test done by a previous doctor & another lab 6 months ago showed just under limits of being gluten sensitive)—-confused as to what to do

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How long have you been gluten free?  I ask because if it has been just a few days, you might want to continue a gluten diet until your endoscopy. That is because most celiacs, once they go gluten free, can react pretty violently to gluten when reintroducing it for a what is called a “gluten challenge“ (two weeks before the endoscopy).  This can make it pretty hard to get a firm diagnosis if you are unable to complete the challenge.

Why bother to get a diagnosis?  The proof would be your reaction, right?  Well, I feel pretty strongly about getting a diagnosis,  if it is possible.  I think it helps you to adhere to the diet and it sets a benchmark for healing.  Later down the line, a repeat endoscopy can determine if you are healing.  I had a repeat endoscopy. It determined that I had healed from celiac disease but found autoimmune gastritis (AIG)  (biopsies) that was not there when I was initially diagnosed.  Had I not had endoscopies, this diagnosis might have been missed.  AIG is a precursor to iron and b-12 deficiencies and cancer.  My new diagnosis allows my GI to monitor and treat those deficiencies as they arise before nerve damage can occur (this happens with B12 deficiencies).  Also to follow up on cancer (had a gastric polyp removed and it was not cancer!). 
 

I realize that the EntroLab owner was a GI. The problem is that none of his research has been published in medical or peer-reviewed.  No one at leading research celiac centers around the world recognize his work.  A conspiracy against this company?  He is just trying to help people, right? But I am not going to debate this.

My husband went gluten free 20 years ago per the advice of my allergist and his GP.  The diet worked.  Does he have celiac disease?  Who knows?  While we do know that gluten makes him ill for sure, he is the first to tell you that I get way more support from medical, family, and friends.  Let’s hope he never ends up in jail or a nursing home.  
 

Years before my celiac disease diagnosis was caught (just a routine colonoscopy consult that ended up adding an endoscopy).  I had an enlarged thyroid and was diagnosed with Hashimoto’s Thyroiditis.  It was confirmed by testing for thyroid antibodies.  This was long before celiac disease was commonly known (it was thought that just little kids developed it).  I probably have a 4th AI (autoimmune)  in process.  The control test Immunoglobulin A used in celiac disease testing was very elevated in my case.  This is either due to autoimmune (though this does not happen to most celiacs) or cancer (MGUS, Multiple Myeloma).  My PCP just tested me for MGUS and I do not have it!  So, this helps confirm that my IgA   was elevated due to autoimmune as my two GIs suspected.  Luckily, my new PCP is newly graduated and he ordered the cancer tests just to be safe!  AI runs in my family, both sides.  My mom was just diagnosed with rheumatoid arthritis and she is 79!  She does have other AI diseases too, but not celiac.  

 

I do understand  wanting to feel better.   It can take decades to get a celiac disease diagnosis.  Like so many members, I was run through the mill for decades and labeled a hypochondriac.  
 

You need to follow your own path.  Only you and your doctors know what is best for you based on your health history.  I hope this helps you.  I can share that I feel great.  It took time to heal, but wow!  The diet for me was so worth it.  I never have the desire to cheat.  

 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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7 hours ago, Chris Simmons said:

Blood work came back that I did not have celiac—have extremely high fecal fat score—currently having test run for small intestinal malabsorption vs pancreatic maldigestion—if score was that high for fat then nutrients and supplements that I’m trying to get to body to remedy neuropathy(cause for this entire thing) are not getting there—have never had “any” gut problems(had a little when drinking & smoking-quit-it quit) or symptoms when starting this “gut” thing—chasing neuropathy cause! Gut/brain/body relationship is “big time”—am learning

Hi Chris,

All the celiac antibody tests depend on the patient having eaten at least some gluten every day for 12 weeks before.  They call that a gluten challenge.  The endoscopy requires 2 weeks of daily  eating gluten before it.  Without the gluten consumption, the tests are invalid.

There are multiple antibody tests.  DGP IgA, DGP IgG, serum IgA, EMA,  Ttg IgA.  I may be forgetting some.  Anyhow, the tests all should have a range of results that they evaluate them against.  Different labs have different test processes and test ranges for results.  So you'd need to find out the full test results including the result ranges to see what your antibodies are doing.

Now, just to make it more confusing, some people don't make IgA type antibodies so their IgA test results are meaningless.  That what the total serum IgA test is for, to determine that a person actually makes normal amounts of IgA antibodies.

There are also some people who have celiac who don't show up on the antibodies tests.  So it's possible to have celiac but not it won't show up on the tests.

Your doctor can do a vitamin and mineral test to show what your current levels are.  That is handy to know and can guide you in choosing to supplement or eat different foods.  Often untreated celiacs are low on vitamin D and some B vitamins and some minerals too.  These mal-nourishment issues can cause lots of health problems.

I don't think you should put a lot of faith in Enterolab testing to guide you though.  Their testing is not accepted for a reason.  That doesn't mean you can't go gluten-free anyway.  Sometimes our own bodies are the most reliable test there is.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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3 hours ago, cyclinglady said:

How long have you been gluten free?  I ask because if it has been just a few days, you might want to continue a gluten diet until your endoscopy. That is because most celiacs, once they go gluten free, can react pretty violently to gluten when reintroducing it for a what is called a “gluten challenge“ (two weeks before the endoscopy).  This can make it pretty hard to get a firm diagnosis if you are unable to complete the challenge.

Why bother to get a diagnosis?  The proof would be your reaction, right?  Well, I feel pretty strongly about getting a diagnosis,  if it is possible.  I think it helps you to adhere to the diet and it sets a benchmark for healing.  Later down the line, a repeat endoscopy can determine if you are healing.  I had a repeat endoscopy. It determined that I had healed from celiac disease but found autoimmune gastritis (AIG)  (biopsies) that was not there when I was initially diagnosed.  Had I not had endoscopies, this diagnosis might have been missed.  AIG is a precursor to iron and b-12 deficiencies and cancer.  My new diagnosis allows my GI to monitor and treat those deficiencies as they arise before nerve damage can occur (this happens with B12 deficiencies).  Also to follow up on cancer (had a gastric polyp removed and it was not cancer!). 
 

I realize that the EntroLab owner was a GI. The problem is that none of his research has been published in medical or peer-reviewed.  No one at leading research celiac centers around the world recognize his work.  A conspiracy against this company?  He is just trying to help people, right? But I am not going to debate this.

My husband went gluten free 20 years ago per the advice of my allergist and his GP.  The diet worked.  Does he have celiac disease?  Who knows?  While we do know that gluten makes him ill for sure, he is the first to tell you that I get way more support from medical, family, and friends.  Let’s hope he never ends up in jail or a nursing home.  
 

Years before my celiac disease diagnosis was caught (just a routine colonoscopy consult that ended up adding an endoscopy).  I had an enlarged thyroid and was diagnosed with Hashimoto’s Thyroiditis.  It was confirmed by testing for thyroid antibodies.  This was long before celiac disease was commonly known (it was thought that just little kids developed it).  I probably have a 4th AI (autoimmune)  in process.  The control test Immunoglobulin A used in celiac disease testing was very elevated in my case.  This is either due to autoimmune (though this does not happen to most celiacs) or cancer (MGUS, Multiple Myeloma).  My PCP just tested me for MGUS and I do not have it!  So, this helps confirm that my IgA   was elevated due to autoimmune as my two GIs suspected.  Luckily, my new PCP is newly graduated and he ordered the cancer tests just to be safe!  AI runs in my family, both sides.  My mom was just diagnosed with rheumatoid arthritis and she is 79!  She does have other AI diseases too, but not celiac.  

 

I do understand  wanting to feel better.   It can take decades to get a celiac disease diagnosis.  Like so many members, I was run through the mill for decades and labeled a hypochondriac.  
 

You need to follow your own path.  Only you and your doctors know what is best for you based on your health history.  I hope this helps you.  I can share that I feel great.  It took time to heal, but wow!  The diet for me was so worth it.  I never have the desire to cheat.  

 

 

Started gluten free 7/8–as told—just received report from GI nurse that blood report showed I did not have celiac disease—want endoscopy done to confirm “gluten sensitivity”(quit drinking & smoking-have “no” desire to go gluten free unless absolutely positive)—Dr Fine at EnteroLab talked to me for 40 minutes(didn’t have to)—is Christian(so am I)—told me lab that tested me(stool test) with my previous functional doctor(where test showed I was not gluten sensitive) was a lab that employees broke off from another lab that had used “his patented test” & that they didn’t know how to use it—I don’t give a flying %#|€ about professional jealousies or egos—I just want to get well—hard for me to believe that going back to gluten after a month off will have a “drastic” effect on me(especially since had “NO” GI symptoms before this started(by the way-previous doctor had found H Pylori and took “Gastromend” for 2 months to mend(hopefully did-weight went from 214-184–also took some Crave Arrest)—repeat—NO usual symptoms for gluten or celiac——just want to get WELL—am not patient—AT ALL—little boy who always asked the teacher 50 questions—don’t apologize one bit—gut/brain/body correlation is BIG(is what got me to current doctor—read Reversing Neuropathy by Brian Prax who referenced Andy Barlow for “brain based therapy”)—gluten(probably) or something else is effecting my gut to keep nutrients and supplements(natural food and others) to remedy this inflammation going on in my nerves and I’m going to get to the bottom of it! Idiopathic means doctors can’t figure out and they “quit”— I’m no quitter—hope you’re well

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34 minutes ago, GFinDC said:

Hi Chris,

All the celiac antibody tests depend on the patient having eaten at least some gluten every day for 12 weeks before.  They call that a gluten challenge.  The endoscopy requires 2 weeks of daily  eating gluten before it.  Without the gluten consumption, the tests are invalid.

There are multiple antibody tests.  DGP IgA, DGP IgG, serum IgA, EMA,  Ttg IgA.  I may be forgetting some.  Anyhow, the tests all should have a range of results that they evaluate them against.  Different labs have different test processes and test ranges for results.  So you'd need to find out the full test results including the result ranges to see what your antibodies are doing.

Now, just to make it more confusing, some people don't make IgA type antibodies so their IgA test results are meaningless.  That what the total serum IgA test is for, to determine that a person actually makes normal amounts of IgA antibodies.

There are also some people who have celiac who don't show up on the antibodies tests.  So it's possible to have celiac but not it won't show up on the tests.

Your doctor can do a vitamin and mineral test to show what your current levels are.  That is handy to know and can guide you in choosing to supplement or eat different foods.  Often untreated celiacs are low on vitamin D and some B vitamins and some minerals too.  These mal-nourishment issues can cause lots of health problems.

I don't think you should put a lot of faith in Enterolab testing to guide you though.  Their testing is not accepted for a reason.  That doesn't mean you can't go gluten-free anyway.  Sometimes our own bodies are the most reliable test there is.

Talked to Dr Fine for 40 minutes—good Christian man(so am I)—not into all this competitive #%<>—just want to get well—current doctor wants me to accept diagnosis and proceed gluten free but I want another confirmation so probably will eat gluten 2 weeks prior to endoscopy—remember had “no gut” symptoms when starting this—just chasing neuropathy cause

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Wow!  You are the first person to report  (in my memory and at least recently) who has had both the stool (EnteroLab)  and celiac disease antibodies blood tests (DGP, EMA and TTG).  The results do not match which is strange.   Keep us posted on your endoscopy result, which hopefully will clear up or validate some of the testing you had so far.  At the very least, you will be able to confirm if your H.Pylori gastritis has resolved.  
 

I wish you well.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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49 minutes ago, cyclinglady said:

Wow!  You are the first person to report  (in my memory and at least recently) who has had both the stool (EnteroLab)  and celiac disease antibodies blood tests (DGP, EMA and TTG).  The results do not match which is strange.   Keep us posted on your endoscopy result, which hopefully will clear up or validate some of the testing you had so far.  At the very least, you will be able to confirm if your H.Pylori gastritis has resolved.  
 

I wish you well.  

EnteroLab does NOT diagnose celiac—only gluten sensitivity—so was no disagreement there from blood test—disagreement was between labs on whether I was gluten sensitive or not—don’t know if you’re familiar with genes-/I have HLA-DQB1*02:01(which predisposes gluten sensitivity and celiac disease & HLA-DQB1*06:03(non-celiac Gene predisposing gluten sensitivity)—all which means stronger likelihood of gluten sensitivity—which leads to immense confusion since no symptoms have ever been present🤔

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Chris,

I was wondering if you have any skin rashes or skin problems like keratosis pilaris, rosacea,  eczema, psoriasis, or dermatitis herpetiformis (DH).  Sometimes celiac disease manifests in the skin.  People with DH don't always have definitive blood test results.  My blood tests were inconclusive, so I had a DNA test.  I've got two Celiac genes, one that causes dermatitis herpetiformis and one that causes classic gastrointestinal problems. Woo hoo! 

You said symptoms kicking in at age 67 seemed strange.  Sometimes celiac disease is triggered by an infection like H. Pylori or the flu or mononucleosis.  Also, as we age, we don't absorb nutrients as well as when young, so possibly the malabsorption problems associated with celiac disease and alcohol consumption haven't reached a critical stage until now. There's the possibility that drinking alcohol prevented gluten absorption so you didn't get bad gastrointestinal symptoms.  And, sort of vice versa, malabsorption prevented the development of alcohol dependence or alcoholism.  

That high fecal fat content may be a symptom of celiac disease malabsorption or of pancreas problems or of gallbladder problems.  Gallbladder problems are common in celiac disease.  Many of us Celiacs have had our gallbladders removed.  As long as your doctor is checking your pancreas, you might have him check your gallbladder, too.  Also, ask for the erythrocyte transketolase test for thiamine deficiency.  Both the gallbladder and the pancreas will function abnormally if there's a thiamine deficiency.  Pancreatic dysfunction can lead to diabetes.  Both types of diabetes have a higher metabolic need for thiamine.  Thiamine is one of the eight B vitamins.  It's water soluble and needs to be replenished every day.  You can start becoming deficient in thiamine in as little as two weeks.  

You said you took Gastromend for your H. Pylori infection.  I looked up the ingredients.  It contains licorice... Licorice contains an enzyme that destroys thiamine (a thiaminase) making it unusable by the body.  You said you lost weight while taking this.  Losing weight without trying is a symptom of thiamine deficiency.  

You said you also took Cravearrest.  I looked that up as well.  I noticed it has a large amount of Vitamin B6 (pyridoxine).  High B6 ingestion exacerbates thiamine and niacin deficiencies.  

Deficiencies in thiamine and niacin can cause peripheral neuropathy.  It's been my experience that doctors don't understand or recognize vitamin deficiencies.  They are trained to prescribe pharmaceuticals and do procedures.  And, because we're not living in a third world country nor obviously starving, they don't recognize vitamin and mineral deficiencies.  

I became severely malnourished before my celiac disease diagnosis.  My nutritional deficiencies were repeatedly misdiagnosed.  I developed type two diabetes, have had my gallbladder removed, and had three of the four D's of pellagra.  The information shared by Dr. Lonsdale and Dr. Hoffer saved my life and brought me back to health.

Dr. Derrick Lonsdale has done research into thiamine deficiency and the resulting dysfunction of the body....

https://www.hormonesmatter.com/thiamine-deficiency-dysautonomia-high-calorie-malnutrition/

https://www.hormonesmatter.com/neuropathy-multiple-sclerosis-treated-biotin-thiamine-magnesium/

http://www.hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/

https://www.hormonesmatter.com/thiamine-deficiency-dependency-syndromes-case-reports/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/

 

Dr. Abram Hoffer and his insights into Niacin saved me from death.....

https://www.amazon.com/Niacin-Story-Wonderful-Healing-Properties-ebook/dp/B01DAWM9SA

And.....

https://www.amazon.com/Vitamin-Cure-Alcoholism-Orthomolecular-Addictions/dp/159120254X/ref=mp_s_a_1_3?dchild=1&keywords=hoffer+the+vitamin+cure&qid=1595841087&sr=8-3

 

I watched some YouTube videos by Dr. Prax.  I agree with the Paleo diet.  I follow the Autoimmune Paleo Protocol.  Dr. Sarah Ballantyne's book is wonderful. 

(Be aware that the Paleo diet can be deficient in thiamine because it excludes good sources of thiamine such as legumes (beans), nuts and seeds.) 

https://www.amazon.com/dp/1936608391/ref=mp_s_a_1_3?dchild=1&keywords=sarah+ballantyne+autoimmune+protocol&qid=1595841443&sprefix=sarah+bal&sr=8-3

 

I doubt Dr. Prax fully comprehends the importance of correcting vitamin and mineral deficiencies in peripheral neuropathy.  I laughed when he recommended massage therapy for peripheral neuropathy.  All that does is overstimulate already dysfunctional nerves until they shut down completely.  

Thiamine and magnesium and niacin and vitamin C supplementation as described by Drs. Lonsdale and Hoffer, and correcting other nutrient deficiencies caused by malabsorption has healed my peripheral neuropathy from the inside out.  I hope these books will help you on your journey to health and wellness.  

Namaste

 

 

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Hi Chris,

Having the genes for celiac does not mean you will get celiac disease.  About 30% of Americans have at least one gene for celiac disease.  Only about 1% of Americans actually develop celiac disease.

Don't be real concerned about giving up gluten IMHO.  It may seem hard at first but you can adapt to the change right?  Maybe it will take some time just like it does for most of us, but that is life.  It can actually be an interesting challenge to find new foods to eat and new ways to feed yourself.  FunFunFun! :)

When you think about going gluten-free think about eating whole foods rather than processed foods.  Things like meat, veggies, eggs, nuts and fruit are good choices.  Mission corn tortillas are a cheap sub for bread, and Aldi makes some decent gluten-free tortillas.  gluten-free bread is available but usually $$$.  There  a lots of gluten-free foods available these days as many more people are trying the gluten-free diet to try and improve their health.  And some of the best foods are naturally gluten-free anyway.

You may have what they sometimes call silent celiac disease.  That's when there are no obvious GI symptoms but the person still has an immune system reaction.

Yes, there is a relation between how our gut functions and how our brain functions.  But that relation is best fixed by eating real whole foods that are gluten-free for people with celiac disease.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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On 7/25/2020 at 6:38 PM, Chris Simmons said:

—as for second part—have been working with regular doctors—the only thing “they” know to do is prescribe “pain meds” which I’m not planning on taking

lol what?   where do you live? Mongolia?

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On 7/26/2020 at 7:23 PM, Chris Simmons said:

Talked to Dr Fine for 40 minutes—good Christian man(so am I)—not into all this competitive #%<>—just want to get well—current doctor wants me to accept diagnosis and proceed gluten free but I want another confirmation so probably will eat gluten 2 weeks prior to endoscopy—remember had “no gut” symptoms when starting this—just chasing neuropathy cause

Hi Chris,

Another thing that can cause neuropathy is diabetes.  And it is very common.  So it's good to be checked for it too.  If you do turn out to have diabetes, then you will want to avoid most of the gluten-free baked goods available now.  gluten-free baked goods often use more sugar than regular gluten baked goods and have less in the way of vitamins.  There is no Gov. requirement for gluten-free baked goods to have certain vitamins added like there is for gluten baked goods.

Great to hear you are a Christian!  :)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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