I only have this one symptom when eating gluten

[jdsalinas]

Hey everyone, first of all sorry for the super long post but I just wanted to be thorough. I’m new around here after lurking and searching and reading other peoples’ issues with celiac and gluten. I recently discovered that I have some type of allergy to gluten. I don’t think I have celiac or maybe I do have some type of it. Honestly I don’t know what I have exactly which is why I’ve been around this forum to see if there’s anyone else out there with my symptoms or something similar. This is all self diagnosed as I don’t have the means to go to the doctor which is why I’ve been researching every chance I get. A little background...I’m 33, 175 lbs, male, stay-at-home dad, rather active with my 2 kids in out and around the house. Unlike most celiacs and others on here, I have no cramps, no gastrointestinal pain, no bloating, no nausea, no physical pain, no abdominal pain, nothing else really. (Well, side note, years ago I did have pain but that was due to my gallbladder which needed to be removed due to stones and inflammation.) The only thing I experience is constipation when I eat gluten. I’ve actually always had constipation issues according to my mom it dates back to when I was a baby.

 

As an adult, I’ve always been constipated to the point where I would go once every 4, 5 or 6 days, once a week at times and when I would go man would it hurt like hell. Like i said, no pain anywhere else, just on “exit”. I just figured ‘ok well my metabolism is slow and I don’t eat very well so yea’. I never really ate healthy....fried stuff mainly, junk food, etc. No veggies or anything healthy at all (you can see why my gallbladder had to be removed). Then before I turned 30, and after gallbladder surgery, I started exercising and for the first time in my life I started eating healthy, I would eat a more protein-heavy diet which I then came to find out that protein generally constipates you if you don’t counter it with something. So, without knowing this piece of info, the protein heavy-diet made the constipation worse. I wouldn’t get urges to go. And even when I would finally get the urge to go it wouldn’t want to come out I would literally have to push the whole way out and it hurt. My rectum would be sore for most of the rest of the day when it was bad. It would be sore, aching and/or itching. I never experienced bleeding until recently. I attributed not having a gallbladder anymore, thinking “well I don’t have a gallbladder anymore so I’m digesting things differently.” But after reading and researching, apparently there’s no correlation with gallbladder removal and constipation, actually some people experience diarrhea. But, I still figured it was probably a combination of no gallbladder and protein-heavy diet. I’ve always had a high tolerance for pain, or at least I like to this so, so I’d power through it and just deal with it. It wasn’t alarming to see and go through until the bleeding. It literally felt like it cut me down there during bowel movements, like it was scraping me as it passed. I never really did anything about it just tried to keep eating better and take some stool softeners (Miralax) and more fiber to at least alleviate some of the pain during bowel movements. It helped somewhat but I still had issues. Would go every few days and it would still feel like it cut me every time basically. Never seen a doctor about it either being that I’m a stay-at-home dad and we’re on one income, we just haven’t had the means for me to be going to a GI doctor which by what I’m reading is test after test after test of so many things and according to other people on here they have yet to find exactly what is going on with them. After researching and researching I figured that finally with all the force and pushing and straining from the constipation, that it was hemorrhoids and/or fissures or something along those lines. So I thought ‘ok well I’ll keep eating better, taking softeners, and treat the affected area with ointments and hopefully it’ll heal or it’ll at least get better to the point where I can live with it.’

 

One day last year I was talking to a friend about it and she suggested that maybe I had an sensitivity to gluten. I had no idea what she was taking about until she started explaining to me. Up to that point, when I would hear gluten free or gluten diet I thought it was just one of those fad diets that people start doing. After getting more info from her and researching on my own I decided to go gluten free, not entirely just introducing little by little because I was still learning about it. It made a big difference. I started going more often, still hurt but figured from all those other times I had to strain I’m probably just really irritated and sensitive down there. Since I noticed a difference I decided to go 100% gluten free. After a while of being entirely gluten free I started going every day or every other day. I have kept a food journal ever since just in case I have a flare up I can pinpoint. Flare ups do happen for me. I discovered that it’s more of an intolerance rather than a sensitivity because even if I have a single crumb of gluten or cross contamination of any kind then I’ll know it the next time I “go”. I’ve been 100% gluten free for several months now. Usually eating outside of the house is the trickiest because you just never know. Even when I go to places that claim to have gluten free or sensitive items there are times that causes me to flare up. The safest place for me to eat is at home because I have full control but it’s still hard sometimes because neither my wife nor my kids eat gluten free. But when I do have full control of everything and I know for sure nothing going in my body is going to cause a negative reaction then it’ll be “smooth sailing” for me. I can go 2, 3, 4 weeks of perfection. I’ll “go” every day or every other day, it doesn’t go past that, sometimes even twice a day. No pain on exit, definitely no bleeding, I can go sit somewhere when I’m done as opposed to before where I had to remain standing for a long period of time because sitting even on a soft couch would hurt. So I can go several weeks good but one ity bity tiny misstep and the next time I “go” the bleeding returns and slight pain because it feels like it’s cracking my skin. Still not as bad as before but still a return of it in any capacity sucks. It’s never a severe amount of blood, just streaked and spotted or smearing on my stool and the same on the toilet paper for about 2 wipes. After that, most of the time, the paper comes out clean by then. 

 

My last flare up happened a few days ago after going about 2 weeks without issues. Went to Red Robin where I usually don’t have issues but this time I had to return my lettuce wrapped burger due to a wrong order. It’s discouraging and disheartening and frankly downright frustrating but I’m trying to hang in there. I still take a dose of Miralax every day and eat at home 100% gluten. I don’t plan on eating out any time soon even at places that I know are okay. I hate not having control. So I hope I can stay good for a long time now.

 

Like I said this is all self-diagnosed due to not having the means for tests and such. But, I must have some type of allergy to gluten if I’m good when I don’t eat it and bad when if i do eat it right?

 

This is my story. Anybody else out there with similar symptoms/issues?

 

Any comments, suggestions, questions, encouragement, etc.? Feel free to do so.

[ravenwoodglass]

Some celiacs do get C before the D sets in. I had years of C similiar to what you were going through. Even had impacted intestines once. That was no fun. It is clear you have an issue with gluten and with the level of sensitivity that you describe may well be celiac. Unfortunately you would need to do a lengthy gluten challenge for any celiac related testing if and when you want to do so. There are folks who are able to stick strictly to the diet without a formal diagnosis but some will want to 'cheat' without one. One negative about you not being diagnosed is that it may be harder to get your children tested. Celiac is genetic so your kids should be screened even if they don't seem to have symptoms. It would be a good idea for you to check out the Newbie 101 thread at the top of the Coping section if you haven't already. Welcome and ask any other questions you need to ask.

[Ennis-TX]

Sounds like either celiac or Ulcerative Colitis...UC really fits with the C and  bleeding. Both flare to gluten, IF You really want to make the stools softer look up Natural Vitality Calm, Take 1/4tsp (1-2g) a day starting every day up it another 1/4tsp (1-2g) til you reach 2tsp or go beyond til you get loose stools then dose back down dosing to tolerance.

Things that help with UC are drinking 8oz of aloe very inner fillet once or twice a day and taking Slippery elm and marshmallow root  daily. Slippery elm I found a few months ago is a life saver, stuff sticks to irritated areas in the colon and works like a bandage and allows your body to heal the area more effectively.

I would suggest testing but I know were you are as I lost insurance myself last year. I take it you have seen the testing info.
Open Original Shared Link
Few thoughts to make your house safer for you, not only read teh newbie but also use freezer paper to fix your food on and as a place mat, easy clean up and safe prep area with no crumbs, Foil line baking dishes cookie sheets, crockpont liners...all the same concept easy clean and safe. Nordicware makes microwave cook ware for omelettes, grill plates with splatter covers, rice cookers, steamers etc. And the standard get your own mixing bowls, whisk, spatula, etc of a different color like red for your dedicated Gluten free ware. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

[jdsalinas]

On 5/31/2018 at 11:31 AM, ravenwoodglass said:

Some celiacs do get C before the D sets in. I had years of C similiar to what you were going through. Even had impacted intestines once. That was no fun. It is clear you have an issue with gluten and with the level of sensitivity that you describe may well be celiac. Unfortunately you would need to do a lengthy gluten challenge for any celiac related testing if and when you want to do so. There are folks who are able to stick strictly to the diet without a formal diagnosis but some will want to 'cheat' without one. One negative about you not being diagnosed is that it may be harder to get your children tested. Celiac is genetic so your kids should be screened even if they don't seem to have symptoms. It would be a good idea for you to check out the Newbie 101 thread at the top of the Coping section if you haven't already. Welcome and ask any other questions you need to ask.

Actually I noticed that when I would "go" twice a day, the second time usually was D-ish, not full blown but no matter how the first time was, the second time was very loose. I have thought about doing the test but I've read that I have to go several weeks eating strictly gluten. That's going to be a lot of pain if I go that route because I know with any gluten in my system it's going to hurt when I go, I just don't want to regress. However, you have opened my eyes with what you said about my kids. Maybe when I get much better "down there" I'll see about getting it done. Thanks for the info. I will check out the Newbie 101 thread as well. Hopefully on the road to recovery.

On 5/31/2018 at 12:06 PM, Ennis_TX said:

Sounds like either celiac or Ulcerative Colitis...UC really fits with the C and  bleeding. Both flare to gluten, IF You really want to make the stools softer look up Natural Vitality Calm, Take 1/4tsp (1-2g) a day starting every day up it another 1/4tsp (1-2g) til you reach 2tsp or go beyond til you get loose stools then dose back down dosing to tolerance.

Things that help with UC are drinking 8oz of aloe very inner fillet once or twice a day and taking Slippery elm and marshmallow root  daily. Slippery elm I found a few months ago is a life saver, stuff sticks to irritated areas in the colon and works like a bandage and allows your body to heal the area more effectively.

I would suggest testing but I know were you are as I lost insurance myself last year. I take it you have seen the testing info.
Open Original Shared Link
Few thoughts to make your house safer for you, not only read teh newbie but also use freezer paper to fix your food on and as a place mat, easy clean up and safe prep area with no crumbs, Foil line baking dishes cookie sheets, crockpont liners...all the same concept easy clean and safe. Nordicware makes microwave cook ware for omelettes, grill plates with splatter covers, rice cookers, steamers etc. And the standard get your own mixing bowls, whisk, spatula, etc of a different color like red for your dedicated Gluten free ware. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Am definitely going to try the NV Calm, aloe, and elm. Is the Calm just once a day and how long does it take for it to go into effect? I've tried my best in our kitchen about keeping my stuff "clean" but it's probably impossible when everyone else in your house has a different diet. I do use foil and baking sheets and even have a dedicated counter space as my own, well I try to make it my own but things happen in a small kitchen. I also try to keep my stuff in the fridge and freezer separate from anything else that does or might have gluten. What I don't have are separate mixing bowls, spatulas, pots and pans which after reading from you and other posts I believe it is now a must. I've read that gluten even gets into the cracks and scratches of some silverware and pots and such which was totally shocking. I try to have full control of everything which is why I try not to eat outside of my house anymore, I don't even feel comfortable eating at family's houses. My wife helps me out but when she tries to cook I try to "supervise" what she's doing and what she's using or even what she touches before or after she's handling my food. She sometimes thinks I'm overreacting but I just don't want to have a flare up or episode of what gluten does to me in the restroom. She's become more understanding, but it's still difficult which is why I'd rather prepare everything on my own. I'm trying to take every precaution, I even wash my hands when touch other foods that aren't mine.It's just hard as I'm sure you're well aware of. 

Thanks for all the amazing info. Hopefully I'm on the road to full recovery. So glad I found this community.

[jdsalinas]

On 5/31/2018 at 12:06 PM, Ennis_TX said:

Sounds like either celiac or Ulcerative Colitis...UC really fits with the C and  bleeding. Both flare to gluten, IF You really want to make the stools softer look up Natural Vitality Calm, Take 1/4tsp (1-2g) a day starting every day up it another 1/4tsp (1-2g) til you reach 2tsp or go beyond til you get loose stools then dose back down dosing to tolerance.

Things that help with UC are drinking 8oz of aloe very inner fillet once or twice a day and taking Slippery elm and marshmallow root  daily. Slippery elm I found a few months ago is a life saver, stuff sticks to irritated areas in the colon and works like a bandage and allows your body to heal the area more effectively.

I would suggest testing but I know were you are as I lost insurance myself last year. I take it you have seen the testing info.
Open Original Shared Link
Few thoughts to make your house safer for you, not only read teh newbie but also use freezer paper to fix your food on and as a place mat, easy clean up and safe prep area with no crumbs, Foil line baking dishes cookie sheets, crockpont liners...all the same concept easy clean and safe. Nordicware makes microwave cook ware for omelettes, grill plates with splatter covers, rice cookers, steamers etc. And the standard get your own mixing bowls, whisk, spatula, etc of a different color like red for your dedicated Gluten free ware. https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Can I take the NV Calm, slippery elm and marshmallow root all together at the same time or spread each one out throughout the day?

[Ennis-TX]

1 minute ago, jdsalinas said:

Can I take the NV Calm, slippery elm and marshmallow root all together at the same time or spread each one out throughout the day?

I have no issues with it, I mix up the slipper elm and marshmallow from 3 capsules each of the nature way one for ease of measurement (I have issues with the capsules) dump it into a bowl mix it up and down it. Then chase it with a glass of NV calm mixed into aloe vera and water or green tea. Just watch your dosing and cut back if it gives you loose stools, NV calm should be eased into.

[jdsalinas]

1 hour ago, Ennis_TX said:

I have no issues with it, I mix up the slipper elm and marshmallow from 3 capsules each of the nature way one for ease of measurement (I have issues with the capsules) dump it into a bowl mix it up and down it. Then chase it with a glass of NV calm mixed into aloe vera and water or green tea. Just watch your dosing and cut back if it gives you loose stools, NV calm should be eased into.

Is this a once a day regimen or several times? I suppose I would have to gauge it to see how my body reacts right?

After a few days of using it, I haven’t noticed much of a difference with one 1/2tsp dose of NV Calm per day. Upping to twice a day today. Yesterday I had a bad flare up with constipation, so bad that I had to push. Treading lightly here because it was just bad. 

Thanks for the prompt reply. I really appreciate it. 

[Ennis-TX]

15 minutes ago, jdsalinas said:

Is this a once a day regimen or several times? I suppose I would have to gauge it to see how my body reacts right?

After a few days of using it, I haven’t noticed much of a difference with one 1/2tsp dose of NV Calm per day. Upping to twice a day today. Yesterday I had a bad flare up with constipation, so bad that I had to push. Treading lightly here because it was just bad. 

Thanks for the prompt reply. I really appreciate it. 

LOL yeah if you dose too high with NV you will have a issue with D. Large doses of Magnesium Citrate are used as laxatives....if you want to "push it" try using grams for exact dosing and around 12-18g will have you dropping cow pies....I normally use 8-12g as higher will have me dropping pies...everyone is different in what they need...I used to require 16g twice a day and still had decent logs.....now days after healing I obviously absorb it better as that will have me with the runs and I had to scale down to less then half that. I also sometimes drop it with D flares with exposures to something and change to doctors best for a week.

 

[jdsalinas]

28 minutes ago, Ennis_TX said:

LOL yeah if you dose too high with NV you will have a issue with D. Large doses of Magnesium Citrate are used as laxatives....if you want to "push it" try using grams for exact dosing and around 12-18g will have you dropping cow pies....I normally use 8-12g as higher will have me dropping pies...everyone is different in what they need...I used to require 16g twice a day and still had decent logs.....now days after healing I obviously absorb it better as that will have me with the runs and I had to scale down to less then half that. I also sometimes drop it with D flares with exposures to something and change to doctors best for a week.

 

Ohhhhh! Ok. I was going by the product label. I was doing 1/2 tsp per day which is only 1 gram per day!! No wonder it didn’t do anything for me. *facepalm*

[Posterboy]

Jdsalinas,

Ennis_Tx,

Beat me to it.

Ennis_Tx and I are the Magnesium Warriors on this forum.

Dose to tolerance is a common thing for Magnesium Citrate.

I actually swapped from Natural Calm Magnesium Citrate powder to a tablet because to be sure I was getting the same amount each time.

Usually a rounded up teaspoon was enough to produce a magnesium flush ie. bowel movement.

then you can adjust your dose back to tolerance.

***note this is for other's who might read this thread.

Knitty Kitty posted this link and it stuck with me.

Open Original Shared Link

while Magnesium attracts water and thus helps lube the GI track much the same way dietary fiber might. .. what is unique about magnesium citrate is the Citrate portion turns to Citric Acid in the stomach when it reacts with your stomach acid.

And depending on the strength of one's stomach acid this might be different depending on the person and citric acid has a mild laxative effect (ok a highly laxative effect) depending on the dose (and weight of the person). . . usually above 400mg every 4 hours. . . and especially on an empty stomach.

It is like taking Citrucel with out the added harsh fibers of some other laxatives and we all need magnesium to function properly.  Think muscle cramps.

It (charlie horses) is someone low in Magnesium.  So Magnesium Citrate works well as a natural laxative for this reason.

magnesium Glycinate another highly biovailable form will not flush people who take it because it does not change into Citric Acid in the stomach.  And have recently changed too Magnesium Glycinate because my BM movements have become regular enough now to not need to take Magnesium Citrate anymore for it's mild laxative effect.

***This is not medical advice but I hope this is helpful.

Posterboy by the Grace of God,