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Gluten free diet = worsened stools, now total D!


mark johnson

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mark johnson Newbie

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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cyclinglady Grand Master
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.  

 

GFinDC Veteran

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.

 

kareng Grand Master

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.  

 

 

 

 

 

Ennis-TX Grand Master

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.

 

GFinDC Veteran
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.

 

kareng Grand Master
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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Ennis-TX Grand Master
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.

 

 

GFinDC Veteran
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.

mark johnson Newbie

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?

ravenwoodglass Mentor
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.

ravenwoodglass Mentor

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.

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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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