Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten free diet = worsened stools, now total D!


mark johnson

Recommended Posts

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". :( 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

 

 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.