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mark johnson

Gluten free diet = worsened stools, now total D!

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Hi all, Facts first:

 I am 33, male, major vegan diet, but do eat chicken once/twice a month, eggs 2-3 times/week. 
Daily staple would be: whole wheat flat breads, veggies, milk, eggs, tea, some fruits. Whey protein on gym days, 3/week. No alcohol, no smoking, no stressful job.

1) Got a blood test, but yet to confirm Celiac, but since my loose fatty stools have been going on for 8-9 months, thought of going gluten-free for a month to see if the bowels firm up at least a little. (note: The blood test was done BEFORE starting gluten-free, coz I know it can come false during a gluten-free diet.)

2) Before going gluten-free, my stools were loose where the initial part would be slightly better, but it would be all loose bits towards the end. Also, I wouldn't go many times, just 1 or 2 times, very rarely 3 times.

3) I had NO other symptoms: no pain, bloating, excess gas, weakness, weight loss, rashes, or anything else.

4) But the steatorrhea was concerning so had the blood test done.

 

History:

1) Have battled with hard stools all my life, it suddenly changed to soft/loose 8-9 months ago.

2) Got a stool report done while on gluten. No parasite, mucus, bloo, occult blood, ova, cysts. Occasional pus cells. YES fecal fat present. Acidic reaction.

3) Lifestyle - No smoking/drinking ever. I've always been slightly underweight, but do workout 3 times/week with weights, so I am good strength-wise.

 

Now my 3 questions to all you experienced folk:

1) It's been 4 days going gluten-free free, but why would my stools worsen, from soft to total D? (And the color is off too, from light yellow/brown to palish brown today.)

Yes, I am eating other non-gluten grains like sorghum/amaranth to compliment any nutritional loss from going gluten-free. Yes, I am eating a couple extra fruit/veggie/fiber servings to make up. So why would going gluten-free make it worse?

2) Should I also stop all dairy for a while? But then, would have to seriously think about protein sources then.

 

My apologies if this has been too long, but I hope you guys understand the pain we all go through, since no one really seems to give too much da** about it at home as long as you don't display "severe symptoms". :( 

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7 hours ago, mark johnson said:

Hi all, Facts first:

 I am 33, male, major vegan diet, but do eat chicken once/twice a month, eggs 2-3 times/week. 
Daily staple would be: whole wheat flat breads, veggies, milk, eggs, tea, some fruits. Whey protein on gym days, 3/week. No alcohol, no smoking, no stressful job.

1) Got a blood test, but yet to confirm Celiac, but since my loose fatty stools have been going on for 8-9 months, thought of going gluten-free for a month to see if the bowels firm up at least a little. (note: The blood test was done BEFORE starting gluten-free, coz I know it can come false during a gluten-free diet.)

2) Before going gluten-free, my stools were loose where the initial part would be slightly better, but it would be all loose bits towards the end. Also, I wouldn't go many times, just 1 or 2 times, very rarely 3 times.

3) I had NO other symptoms: no pain, bloating, excess gas, weakness, weight loss, rashes, or anything else.

4) But the steatorrhea was concerning so had the blood test done.

 

History:

1) Have battled with hard stools all my life, it suddenly changed to soft/loose 8-9 months ago.

2) Got a stool report done while on gluten. No parasite, mucus, bloo, occult blood, ova, cysts. Occasional pus cells. YES fecal fat present. Acidic reaction.

3) Lifestyle - No smoking/drinking ever. I've always been slightly underweight, but do workout 3 times/week with weights, so I am good strength-wise.

 

Now my 3 questions to all you experienced folk:

1) It's been 4 days going gluten-free free, but why would my stools worsen, from soft to total D? (And the color is off too, from light yellow/brown to palish brown today.)

Yes, I am eating other non-gluten grains like sorghum/amaranth to compliment any nutritional loss from going gluten-free. Yes, I am eating a couple extra fruit/veggie/fiber servings to make up. So why would going gluten-free make it worse?

2) Should I also stop all dairy for a while? But then, would have to seriously think about protein sources then.

 

My apologies if this has been too long, but I hope you guys understand the pain we all go through, since no one really seems to give too much da** about it at home as long as you don't display "severe symptoms". :( 

Going gluten free in theory should  not make anything worse.  Maybe, you have an intolerance to those other grains.  Who knows?  (I am not a doctor.). Best to wait for the results of the celiac blood tests, but keep in mind that a celiac disease diagnosis usually involves an endoscopy (intestinal biopsies) that requires you to be consuming gluten daily.  

 

Edited by cyclinglady

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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Hi Mark,

There is usually an endoscopy after the blood antibody tests.  You should be eating gluten until the endoscopy is completed and test results received.  You may not be able to get a celiac diagnosis without the endoscopy.  They should take 4 to 6 biopsy samples during the endoscopy to check them for intestinal damage.

If you do have celiac disease, going gluten-free isn't an instant cure.  Actually, there is no cure for celiac disease.  What we can do is treat the condition by not eating any gluten, and switching to a healthy diet.  Eating mostly whole foods and avoiding most processed foods is a good thing for us.  Especially when first starting the diet, when our systems are adjusting and healing.  Yes, you should probably avoid dairy for a while.   Celiac disease damages the villi lining the small intestine.  Those villi make the lactaze enzyme that digests dairy sugar (lactose).  Without the lactaze enzyme, dairy sugar is left whole and feeds a bacteria explosion.  You become lactose intolerant.

Recovery from celiac damage can take a varying amount of time.  It could go fast or it could take18 months or so.   We are dealing with an immune system issue and the immune system doesn't turn off on a dime.  It takes some time to wind down it's attack.

 

Edited by GFinDC

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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Actually, going gluten-free could make things worse, even with Celiac.  Because you have changed what you eat.  Your fiber content may be different, you may have started eating a new food that your body finds hard to digest, more or less sugars/carbs ( even naturally occurring ones), etc.   

 

So, assuming a damaged system,  it may take weeks or months to get everything used to the new foods and running smoothly.  

 

 

 

 

 


 

 

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Might try eating more Nuts, Seeds, and supplementing your diet with nutritional yeast. Dairy might cause some issues with the gluten gone the dairy could be more easily permeating your intestinal walls causing irritation. Give it a few weeks for your body to adapt. After going gluten free some people get extreme issues after the first 2 weeks as their body adapts clears out the stuff caked in your intestines as gluten sticks to the walls, and then the withdrawal systems might hit you. You will find your self more sensitive to other foods and some other things might show up.

 


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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8 minutes ago, Ennis_TX said:

Might try eating more Nuts, Seeds, and supplementing your diet with nutritional yeast. Dairy might cause some issues with the gluten gone the dairy could be more easily permeating your intestinal walls causing irritation. Give it a few weeks for your body to adapt. After going gluten free some people get extreme issues after the first 2 weeks as their body adapts clears out the stuff caked in your intestines as gluten sticks to the walls, and then the withdrawal systems might hit you. You will find your self more sensitive to other foods and some other things might show up.

 

Hi Ennis,

Welcome to the forum! :)

I think you got part of that incorrect.  Gluten doesn't get "stuck to the intestinal walls" or caked on.  We aren't baking cakes in our guts! :)

Gluten exposure can cause constipation though, but that shouldn't last more than several days or so.  The only things left behind in our guts generally is lots of bacteria, and the gut lining itself.   The stool being gone it takes all kinds of things with it, including the gut lining at times when celiac damage is happening.  Celiacs with severe gut damage have an almost smooth gut surface, as all the surface villi are gone.  I think they call that Marsh stage 4 or some such.

Dairy shouldn't be able to penetrate the gut more easily as a result of removing gluten from the diet IMHO.  Although you may have some medical knowledge there that I haven't seen.  If so, please share so we can all learn.

You are right about digestive issues possibly getting more noticeable a few weeks after going gluten-free.  Our guts are damaged and the bacteria balance and enzyme production are out of whack,  Those things will hopefully start to recover quickly but the process of getting back to "normal" can be a little time consuming and rough.

Actually, when our guts biome is out of balance, and our ability to digest foods is impaired, it can cause many foods to seemingly cause a reaction.  It can be hard to tell for  awhile what foods are actually causing a reaction, versus just being hard to digest.  If everything is hard to digest, everything can be a problem.  I think the idea of rotating foods is somewhat helpful, as we might develop reactions to some foods if they are present frequently while our guts are irritated.  I am not sure there is any medical proof on that idea though.

 


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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52 minutes ago, Ennis_TX said:

Might try eating more Nuts, Seeds, and supplementing your diet with nutritional yeast. Dairy might cause some issues with the gluten gone the dairy could be more easily permeating your intestinal walls causing irritation. Give it a few weeks for your body to adapt. After going gluten free some people get extreme issues after the first 2 weeks as their body adapts clears out the stuff caked in your intestines as gluten sticks to the walls, and then the withdrawal systems might hit you. You will find your self more sensitive to other foods and some other things might show up.

 

Stuff & gluten  aren't " caked" onto the walls of your intestines.    Bodies just don't work like that.

 

 

 

 


 

 

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1 hour ago, GFinDC said:

Hi Ennis,

Welcome to the forum! :)

I think you got part of that incorrect.  Gluten doesn't get "stuck to the intestinal walls" or caked on.  We aren't baking cakes in our guts! :)

Gluten exposure can cause constipation though, but that shouldn't last more than several days or so.  The only things left behind in our guts generally is lots of bacteria, and the gut lining itself.   The stool being gone it takes all kinds of things with it, including the gut lining at times when celiac damage is happening.  Celiacs with severe gut damage have an almost smooth gut surface, as all the surface villi are gone.  I think they call that Marsh stage 4 or some such.

Dairy shouldn't be able to penetrate the gut more easily as a result of removing gluten from the diet IMHO.  Although you may have some medical knowledge there that I haven't seen.  If so, please share so we can all learn.

You are right about digestive issues possibly getting more noticeable a few weeks after going gluten-free.  Our guts are damaged and the bacteria balance and enzyme production are out of whack,  Those things will hopefully start to recover quickly but the process of getting back to "normal" can be a little time consuming and rough.

Actually, when our guts biome is out of balance, and our ability to digest foods is impaired, it can cause many foods to seemingly cause a reaction.  It can be hard to tell for  awhile what foods are actually causing a reaction, versus just being hard to digest.  If everything is hard to digest, everything can be a problem.  I think the idea of rotating foods is somewhat helpful, as we might develop reactions to some foods if they are present frequently while our guts are irritated.  I am not sure there is any medical proof on that idea though.

 

I did not mean the literal term "Caked" I was referring to food particles sometimes staying in trace amounts in the intestines in recesses, folds, etc. In the case of gluten or other allergens I notice the symptoms hang around a bit sometimes for a week or two til it clears all up. While not directly related I phrased this wrong. I am sorry for the misconception caused by this. Thank you for the correction I know it does not literally cake to the walls, As to the dairy reference, there are several studies that have found that some proteins in dairy can permeate the walls of the intestines and people with intestinal damage are more prone to this. As to if this could be his issues I am unsure as every person is different. I have heard some stories of people gone gluten free being less tolerant to dairy, and other foods, especially common allergens.  I do suggest trying a food elimination diet where you rotate a food you suspect might be causing the issue out of you diet for a few weeks, then reintroduce it for a few days and remove it again to document how you feel with it. This is a long process but it can help you narrow down the cause and find food combinations that work for you. Do talk to you doctor/dietician to sit down and work out a food plan.

1 hour ago, GFinDC said:

Hi Ennis,

Welcome to the forum! :)

I think you got part of that incorrect.  Gluten doesn't get "stuck to the intestinal walls" or caked on.  We aren't baking cakes in our guts! :)

Gluten exposure can cause constipation though, but that shouldn't last more than several days or so.  The only things left behind in our guts generally is lots of bacteria, and the gut lining itself.   The stool being gone it takes all kinds of things with it, including the gut lining at times when celiac damage is happening.  Celiacs with severe gut damage have an almost smooth gut surface, as all the surface villi are gone.  I think they call that Marsh stage 4 or some such.

Dairy shouldn't be able to penetrate the gut more easily as a result of removing gluten from the diet IMHO.  Although you may have some medical knowledge there that I haven't seen.  If so, please share so we can all learn.

You are right about digestive issues possibly getting more noticeable a few weeks after going gluten-free.  Our guts are damaged and the bacteria balance and enzyme production are out of whack,  Those things will hopefully start to recover quickly but the process of getting back to "normal" can be a little time consuming and rough.

Actually, when our guts biome is out of balance, and our ability to digest foods is impaired, it can cause many foods to seemingly cause a reaction.  It can be hard to tell for  awhile what foods are actually causing a reaction, versus just being hard to digest.  If everything is hard to digest, everything can be a problem.  I think the idea of rotating foods is somewhat helpful, as we might develop reactions to some foods if they are present frequently while our guts are irritated.  I am not sure there is any medical proof on that idea though.

 

 


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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19 hours ago, Ennis_TX said:

I did not mean the literal term "Caked" I was referring to food particles sometimes staying in trace amounts in the intestines in recesses, folds, etc. In the case of gluten or other allergens I notice the symptoms hang around a bit sometimes for a week or two til it clears all up. While not directly related I phrased this wrong. I am sorry for the misconception caused by this. Thank you for the correction I know it does not literally cake to the walls, As to the dairy reference, there are several studies that have found that some proteins in dairy can permeate the walls of the intestines and people with intestinal damage are more prone to this. As to if this could be his issues I am unsure as every person is different. I have heard some stories of people gone gluten free being less tolerant to dairy, and other foods, especially common allergens.  I do suggest trying a food elimination diet where you rotate a food you suspect might be causing the issue out of you diet for a few weeks, then reintroduce it for a few days and remove it again to document how you feel with it. This is a long process but it can help you narrow down the cause and find food combinations that work for you. Do talk to you doctor/dietician to sit down and work out a food plan.

 

Hi Ennis_TX,

I think you are right about some dairy proteins being able to get past the intestinal barrier at times.  You are also right about people having additional food intolerances beyond just gluten.  We can develop an intolerance to any food really.  I have several myself, and many of the other members have them too.  I do think it's a little early for Mark to start looking for those other intolerances at this point.  He was only gluten-free for 4 days when he posted.  It takes a while for the digestive system to heal and the gut biome to normalize.  With so much going on at the beginning of the diet , it can be confusing to try and narrow down other possible food issues.  Dairy is one common one though that affects may celiacs.

@Mark Johnson,

Hi again Mark,

I hope you are getting something useful out of the discussion on your situation! :)  It's true that sometimes our guts take quite a while to settle down after going gluten-free.  I had gut spasms for about 5 weeks after starting the gluten-free diet.  I could look at my abdomen and my belly would be pulsating.  Alien babies here we come!

The immune system has to wind down it's attack, the gut bacteria has to normalize, the gut lining has to heal, your body needs to start doing  a better job absorbing nutrients so it can heal also.

To help all that process along, it is good to eat a simple, whole foods diet.  Meats and nuts, veggies, maybe a little fruit.  Avoid most sweet things as the sugar feeds gut bacteria and makes lots of gas.  It's best not to eat out also, but make your food at home.  After a few weeks of this (or months) things ought to get better.

Be aware though that the immune system will never forget about hating gluten.  After being gluten-free a while you may find your system is reacting to very small amounts of gluten.  So you will need to think about possible cross-contamination, like shared peanut butter or other condiments.  Or kissing a gluten eater before they brush their teeth.  Ewww!

I suggest you get some Pepto Bismol and milk of magnesia.  Pepto Bismol can help soothe the gut a little.  Peppermint tea is good for gas.

Stay away from dairy but do try it again in a few months if things are going well.  Some people can eat dairy fine but others never regain the ability to eat it.

You should have a test for your vitamin and minerals also.  Some of them could be low due to malabsorption.

There's a lot to learn about celiac disease but we are glad to help.

Edited by GFinDC

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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Wow, so many answers from all you guys, I am so thankful this community exists and we can openly discuss these weird issues without any judgment! 

So I'll update here with my comments:

  1. The blood tests for both IgG and IgA was negative, levels are 1.2 and 2.2
  2. Next, it's NOT diarrhea, never was. It's more like cow plop (sorry for TMI!). Also, I don't have any noticeable gas, discomfort, pain, distention or other bodily/systemic symptoms.
  3. Surprisingly had an almost solid first half BM yesterday after months (the end was loose though)!
    But followed that with an afternoon loosie! :'(
  4. Ignoring milk can be tried out, but I have like zero lactose type symptoms like gas, bloating, etc. NOTHING. I feel great after consuming milk/whey actually! So should I still try reducing it for a week?

 

3 UPDATED QUESTIONS FOR YOU FOLKS:

1) Since my ONLY symptom is loose, fatty BM, can this NOT be celiac in the first place? Is a biopsy even warranted at this point after both iga and igg are well within average?

2) Is this even close to being some kind of cancer/polyp? I know that's far fetched for multiple reasons (age is 33, mostly plant-based diet, zero other symptoms, no occult blood or blood in BM), but I am just being over-cautious and asking for the worst.

3) Should I still continue with the gluten-free diet to test for a month for non-celiac sensitivity, or should I re-introduce some whole wheat after my first 2 weeks are complete, to see any reaction?

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On 9/17/2016 at 3:29 PM, Ennis_TX said:

I did not mean the literal term "Caked" I was referring to food particles sometimes staying in trace amounts in the intestines in recesses, folds, etc. In the case of gluten or other allergens I notice the symptoms hang around a bit sometimes for a week or two til it clears all up.

 

The reason that symptoms take a bit to resolve is because the antiboies can take time to go down.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Mark, Can you post the tests and results as they are written on the paper along with the labs ranges? Some doctors don't do a full panel or run a serum IGA to make sure the person is not IGA defiecent.

I agree that you should drop dairy for a bit to see if it helps.

You mention having had hard stools for most of your life and that what you are seeing is not D but much softer stools.  Maybe your change in diet is simply your body 'normalizing' after years of C. Just a thought.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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