Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

All Of The Healing Is Reversing


Lister

Recommended Posts

Lister Rising Star

I thought i was getteing better my movements had started to get more offten and alot more production, but now im back to having these really dark stools and some of them come out like pellets, they contain lots of black things that smear ablack color on the tp, this same thing happened before i was put on the gluten free diet and they had me do a hemocolt card to test for blood and they said they did not find any, could the test provide a false negative??? i just dont know whats going on anymore they brain fog is increasing my stomic keeps making noises and my stools are scareing the crap out of me, i dont get to see my doctor tell monday and im going to give myself a panic attack. its been a month now of feeling like crap all the time and im reaching my breaking point, i have been in and out of doctors offices with out results all sorts of tests done on me and nothing found besides stupid folds in my small intestines. Am i healing- idont know now it sure does not seem like it im about to toss this diet out the window and eat what i want since i feel misarable anyways atleast i wouldnt have to stress on what im eating. I just dont know what to do anymore i dont even think i have celiac disease * i have not had blood work done yet not until monday* i think its something else but i dont know what but im so out of it i cant even discribe how i feel besides almost suicideal. im so dapressed and worried that my heart is pumping faster then i can count. im sorry im ranting its the only place i could find to do so since my gluten-free is getting sick of hearing me moan all the time to the point of im afraid she is going to leave me. My famly thinks im crazy and wont even belive that celiac disease is real * great family support* anyways i will stop ranting and i understand if this post gets deleted since it has alot of useless crap in it


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



Celiac.com Sponsor (A8-M):



debmidge Rising Star

first analyze "Is there something you are taking that will turn your stools dark?" like aspirin, Pepto Bismal, any "bismuth" medication, spinach or iron supplements.

Ok, next, what about dairy....sometimes dairy will constipate. Are you lactose intolerant even to a small degree? This might sound kooky, but are you eating a lot of chocolate (it's binding and can cause stools to be pebbly)?

Lister Rising Star

nope to all of your questions

mouse Enthusiast

You have not had the Celiac panel done yet, but you are gluten free. By being gluten free, you can screw up the Celiac results and get a false negative. You can never get a false positive, but you can a negative. I really don't know what else to tell you and I am sorry that you are feeling so miserable.

jenvan Collaborator
I thought i was getteing better my movements had started to get more offten and alot more production, but now im back to having these really dark stools and some of them come out like pellets, they contain lots of black things that smear ablack color on the tp, this same thing happened before i was put on the gluten free diet and they had me do a hemocolt card to test for blood and they said they did not find any, could the test provide a false negative??? i just dont know whats going on anymore they brain fog is increasing my stomic keeps making noises and my stools are scareing the crap out of me, i dont get to see my doctor tell monday and im going to give myself a panic attack. its been a month now of feeling like crap all the time and im reaching my breaking point, i have been in and out of doctors offices with out results all sorts of tests done on me and nothing found besides stupid folds in my small intestines. Am i healing- idont know now it sure does not seem like it im about to toss this diet out the window and eat what i want since i feel misarable anyways atleast i wouldnt have to stress on what im eating. I just dont know what to do anymore i dont even think i have celiac disease * i have not had blood work done yet not until monday* i think its something else but i dont know what but im so out of it i cant even discribe how i feel besides almost suicideal. im so dapressed and worried that my heart is pumping faster then i can count. im sorry im ranting its the only place i could find to do so since my gluten-free is getting sick of hearing me moan all the time to the point of im afraid she is going to leave me. My famly thinks im crazy and wont even belive that celiac disease is real * great family support* anyways i will stop ranting and i understand if this post gets deleted since it has alot of useless crap in it

So you are getting your 1st Celiac blood work done on Monday? Is that what you meant? If so--you should not be gluten-free, as it may give you negative or skewed results. What made you be suspicious of having Celiac and try the diet?

A few more thoughts: 1. Are you sure you are 100% gluten-free? Including lotions, medicines, vitamins, chapstick etc. 2. It can take several months for some individuals to notice progress in symptoms and bowels. I felt worse initially--and am not the only one. It really takes some time to figure out what's safe and get the hang of it. 3. Definitely do the food journal--perhaps you have another issue like dairy. 4. You sound like you are constipated (the pellets and mucous)--get more fiber in your diet and I would try to take a psyllium type supplement too to help keep things moving. Also--cut out the chips, chili etc--go to plainer foods--stick with salad, chicken breasts, rice (if you can eat that), some fruit... In your situation the chips etc. can't be helping. 5. Also--didn't you say you were going to get tested for Crohn's or something? What tests have you had?

Now, take a deep breath. You will get through this!! This can be scary and overwhelming! But many of us have passed through similar times and are now here to help... Just try and take it a step at a time and hang in there. You can make it to Monday. If you feel like you can't do anything--just rest, get a movie, lay down...take your mind off things. Your heart very well may be pumping quickly because of your anxiety--that is very common. It would help if you could just list off all your suspicious symptoms--we can help you brainstorm for causes. (What do you mean folds in your intestines? Having the blood in stools ck doesn't necessarily tell you anything about having Celiac Disease--more crohn's, or something w/bleeding) Also--do you have 1. a doctor who is working with you on all this? and 2. A friend who is there to support you right now? I am sorry about your girlfriend...not having the support of those closest to you is so discouraging. If you feel like you are to the breaking point physically, don't be afraid to go to the hospital. Do you feel comfortable with your doctor--is she/he really listening and researching for you? Please share everything with them on Monday. Lot of questions here, but its hard to help with out all the info--hope things get better today!

aikiducky Apprentice

Jen pretty much covered it all already. DONT PANIC! :)

There are people on this board all the time posting about feeling worse when they start the diet. It seems to be a part of the healing process. I definitely felt worse the first months on the gluten free diet. Your body is still trying to figure out how to function without the evil gluten, it'll calm down eventually.

Pauliina

Lister Rising Star

i have had a upper GI, catscan, some other x-rays, and some blood tests for aneimia and 2 other things im thinking one was liver. the doctor told me to go gluten free a week and a half before my blood work on monday. i told him that i need gluten for the test and he says i would have to be gluten free for atleast a month for it to have a effect on the test. yes im working with the same doctor


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



Celiac.com Sponsor (A8-M):



Lister Rising Star

also on a another reverse, my lymp nodes on my chest right before my arm connects are swollen and it hurts to lift my arms up. also my stools are now coming up in 2 colors its half bright green and half regular brown, i dont know whats happening 2 days ago i was having regular movements finally and now its all back to the way it was, as for hygene products im really carefull not to get any into my mouth. i use swave shampoo as its cheap but im carefull not to get it into my mouth

as to the quesetions about folds, the doctor says i have subsaren folds in my small intestines and all he said is that its a sign of celiac disease. no clue if this is true or not.

you said to list symptoms so

symptoms-

fatigue

brain fog- stoned like state

light tracers- only sometimes

stomic poping noises- or gurgles i cant tell what

sounds of gas passing but inside of me instead of out

swollen lymph nodes

iregular stools- always changing sometimes looks good or sometimes looks bad- looking bad right now

shortning of breath randomly- like even though im breathing i still gasp for air- wierd- usaly happens when im trying to go to bed

had constant nausua- went almost completly away after going gluten free

and starting today i have developed joint pain between my elbow and my arm'

as for going to the hospital- did that 2 weeks ago when i was feeling this same way where i thought i was going to colapse and they did the catscan and some blood tests of some sort and said that nothing was wrong and to go home- ER at that so the bill is going to be awful because i dont have health insurance this whole thing is going to make me homeless probably. i cant keep going to the doctors office

and as for rest- i have to work from 4am-2pm everyday until monday :(

penguin Community Regular
also on a another reverse, my lymp nodes on my chest right before my arm connects are swollen and it hurts to lift my arms up. also my stools are now coming up in 2 colors its half bright green and half regular brown, i dont know whats happening 2 days ago i was having regular movements finally and now its all back to the way it was, as for hygene products im really carefull not to get any into my mouth. i use swave shampoo as its cheap but im carefull not to get it into my mouth

Have you ever had mono?

Lister Rising Star

nope

penguin Community Regular

Almost all adults have had mono, but many don't get symptoms. Why not check to see if you have mono? It causes the lymph node swelling and screws with your digestive tract. Just a thought.

Lister Rising Star

wouldnt be able to check until monday can it wait or is it seriuse??

also not sure if this could cause the swelling but i smoke cigs on a 1 every hour and a half basis usaly. i would quit as i know your going to tell me to, but im under to much emotianal and physical stress

Guinevere Newbie

sounds like you may be detoxing. stool movements change dramatically when the offending (gluten) substance is removed. and it takes a while for that to happen. your body is in a state of major recovery, it is healing itself after a long battle. if you read up on colon cleansing, you'll discover that what you're describing sounds like cleansing and that it is normal (dark stools usually mean old poop). it would also result in additional brain fog because your body is working hard to eliminate the offending substance. in essence, you're body is toxic until you're clean and that takes time.

but i would not entirely rule out other offending substances such as dairy, soy, corn, and eggs (this seem to be the major ones). you might consider eliminating one at a time and reintroducing to see what happens.

you might also consider adding in some vitamins, especially the B's, particularly B6 & B12, iron and don't forget the probiotics and enzymes. but you might want to hold off on the iron until all of your bloodwork has been done, in case you're anemic.

for me it took 1-2 months being gluten-free before i started to feel some semblence of normailty, hang in there, you will get better, and you're not crazy at all.

TCA Contributor

If you've only been on the diet for a week or so, you're probably not going to see results yet. I don't think it's a good idea to go gluten-free until after the bloodwork, though. My son't BMs would be the color of whatever he ate because his body wasn't processing things correctly. It took 3 weeks on the diet for his BMs to be normal. It might take longer for an adult. I know how hard it is, but hang in there. After the tests on monday, start again with the gluten free diet. It's so easy to make mistakes at first. This weekend might be a good time to clean out your pantry and make sure things are gluten free. I did this at the beginning by calling the 1-800 numbers on the back of the products. If I had any doubt, I gave it away. Cross contamination is also an issue. My son will get very sick if anything with gluten even touches his food. You have to be very careful with cooking utensils, toasters, etc. It's much easier if you just have a gluten-free house. That's what we did. the shampoos, shaving creams, etc do make a big difference. I use a lot of Suave too. The good news is that they will list Wheat, Rye, Barley or Oats on the back if it's in there. Not all of their products of gluten-free, but a lot are. You just need to read the labels.

I hope you feel better soon. Try to calm down and remember this is a long road and it may take a while to feel a lot better.

This might help too. These food companies do not hide gluten and always list Wheat, Oats, Rye, or Barley if they use them:

Aunt Nelly's

Balance Oasis (Balance Bars)

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbell’s

Cascadian Farms

Celestial Seasonings

ConAgra

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hillshire Farms

Hormel

Hungry Jack

Jiffy

Klodike

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Marzetti

Master Foods

Muir Glen

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Sara Lee and their subsidiaries (Kahn's, Ball Park, Jimmy Dean, etc...)

Seneca Foods

Smucker

Stokely's

Sunny Delight

T marzetti

Tone’s

Tyson

Unilever

Wishbone

Yoplait

Zaterain's

Lister Rising Star

what vitemens do u recommend they have to be cheap and come from GNC because its hte only viteman store in town and i have to return cans to get the money for them.. i hate rent check

i was already tested to see if i was anemic about 2 weeks ago when i was at the hospital and that was a nope, unless i just now became anemic

also as a slight update, for the past 20 minutes my stomic is exesivaly growling like i get a burn then GROOOOWLLLL. i ate already and am drinking lots of water so im not sure what that is

oh and the vitemens also have to be wheat-gluten * duh* and milk free- i am minorly lactose

TCA Contributor
what vitemens do u recommend they have to be cheap and come from GNC because its hte only viteman store in town and i have to return cans to get the money for them.. i hate rent check

i was already tested to see if i was anemic about 2 weeks ago when i was at the hospital and that was a nope, unless i just now became anemic

Our local drugstore has a brand called Mason's that is gluten free. Says so on the bottle. That brand is not so expensive. I don't know anything about GNC.

jerseyangel Proficient
what vitemens do u recommend they have to be cheap and come from GNC because its hte only viteman store in town and i have to return cans to get the money for them.. i hate rent check

i was already tested to see if i was anemic about 2 weeks ago when i was at the hospital and that was a nope, unless i just now became anemic

Centrum is inexpensive, and can be found in Wal Mart, drug stores, and grocery stores.

Lister Rising Star

ok so i have desided the worse symptom i have is those stomic growls, they went away for like almost 2 weeks but today they just wont stop some of them last up to 30 seconds anyone know what it is it kind of worrys mejust because they dont seem to be stopping just one after another

Guinevere Newbie

do you eat dairy? i had what you're describing and i found out i could not eat dairy.

Lister Rising Star

nope i have stayed clear since i am slightly lactose. All i have had today is a bananna and some gaterade so neither of those should be causing these pains/growling

jenvan Collaborator

For what its worth gatorade gives me gas and the gurgles--I can't drink it for some reason :blink: (Will write more thoughts later).

Lister Rising Star

what makes not sense to me is after about 5 days of beeing gluten free i started to feel really really good like a dramatic improvement. But out of the blue im pretty much back to where i was, i was having perfectly good healthy looking movements but there now a very green like almost bright green shade- im asuming mucuse from somewhere in my bowl, and those growls are increasing and have not seased for the past 9 hours now. Also i seem to have developed a rash on my upper neck that looks like lots of little pimples all in a patch, but there not zits as they formed in a matter of seconds like around 9 aclock and they hurt to tuch.

as for the person that said it may be mono that i have, i guess i messed up when i said lymphnodes- becuase lymphnodes are in the back of your armpit and my soreness is coming from the front where my heart is and on the other side, like sore to the tuch and it hurts to lift up my arms. also today my lips seem to keep getting pasty color and stick together-probably just getten chapped lips again but i figured i would mention it

thank you all for your great advice, im heading to the store soon to pick up some vitemans now that im off work for the day,

also what juices are a good idea/ brands- i know apple juice i should probably avoid for now because of the acidic content any other juices with less acid- im getten tired of water and gaterade.

aikiducky Apprentice

I like pineapple juice. Do remember to check labels even with things like juice!

You know, from how you describe that you quite suddenly developed the rash, and the gurgles, it sounds to me like you might have gotten some gluten somewhere without noticing it, it sounds a lot like you might be having a gluten attack. What have you eaten, drank or touched in the last 24 hours? (Touched, because if you touch something and then without noticing put a finger in your mouth or touch your food, you can get glutened that way)

Pauliina

Lister Rising Star

well for dinner last night i had a burger salad, from BK, but i made it myself as i work there and can controle CC issues. and today all i had was a banana and some gaterade before that rash showed up

JodiC Apprentice

Hang in there. All the testing and doctors can be very overwhelming. You can keep the costs down by being knowlegable about the disease. Do research!!!!!!! Read everything you can. Print it out and take it with you to the appointments. When you go to see the doc be specific about the tests you want run. Explain that money is an issue and you cannot and will not pay for a fishing expedition. I know that may sound harsh but we know more about this than our family practice doctors. ( speaking from experience). In fact 15 people have been diagnosed in my town since me by my doc. She actually asks me questions to help her explain to these patients what avenues to take. WebMD is an excellent site for info as is MayoClinic.com. Just type in Celiac and you will find info on the disease and the other conditions that may complicate it. Knowledge is power and knowing what you are dealing with will help to put things in perspective. All of us get ticked off and want to give up at times but if you can focus on something else you can get through this.

what makes not sense to me is after about 5 days of beeing gluten free i started to feel really really good like a dramatic improvement. But out of the blue im pretty much back to where i was, i was having perfectly good healthy looking movements but there now a very green like almost bright green shade- im asuming mucuse from somewhere in my bowl, and those growls are increasing and have not seased for the past 9 hours now. Also i seem to have developed a rash on my upper neck that looks like lots of little pimples all in a patch, but there not zits as they formed in a matter of seconds like around 9 aclock and they hurt to tuch.

as for the person that said it may be mono that i have, i guess i messed up when i said lymphnodes- becuase lymphnodes are in the back of your armpit and my soreness is coming from the front where my heart is and on the other side, like sore to the tuch and it hurts to lift up my arms. also today my lips seem to keep getting pasty color and stick together-probably just getten chapped lips again but i figured i would mention it

thank you all for your great advice, im heading to the store soon to pick up some vitemans now that im off work for the day,

also what juices are a good idea/ brands- i know apple juice i should probably avoid for now because of the acidic content any other juices with less acid- im getten tired of water and gaterade.

Just curious... what color and flavor of Gatorade. Some of them will turn stools green. Google Green bowel movements and it will explain it.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,382
    • Most Online (within 30 mins)
      7,748

    englishbunny
    Newest Member
    englishbunny
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
×
×
  • Create New...