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

Intestinal Muscle Damage


Renaye

Recommended Posts

Renaye Contributor

I am struggling with my new me and wanted some help. I have positive DPG tests. I also have food intolerances to eggs, peanuts and dairy which I have probably had from day one of life. I am treated with plaquenil for fatigue, mild joint pain and dryness. I also have chronic constipation which I thought was related to celiac but there has been no change. I have discovered that I have poor rectal muscles and also failed the "balloon" test during physical therapy for constipation. I am on a high soluable diet and miralax. Nothing was explained to me but I gather that I have at least lost my muscle control of my lower bowels which is the cause of the constipation since I am unable to push anything out. Is this autoimmune related? Can it be caused by delivery of a child? I struggle with this daily and I am bummed that I need to take something to be "normal" for the rest of my life.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I'm sorry you are going through this. Are you on any other meds that might have C as a complication? Have you dropped dairy and soy  from your diet? It may not be the case for you but for me any soy other than lecithin will bind me up for days.  Are you still getting physical therapy?  The treatments like bio-feedback training can be helpful for some.

Your OB/Gyn should be able to tell you whether it could be related to childbearing.

Did you have neuro symptoms as part of celiac? If that is the case this may ease after a while longer as it can take a very long time for nervous system impact to heal.

I probably haven't been very helpful but hope you get some relief soon.

Renaye Contributor

Ravenwoodglass

 

I have been gluten-free since 2010 and there has been no changes in my constipation.  I am on Dexilant, plaquenil, vitamin D and take calcium but was constipated way before taking calcium.  Insurance only covered 10 sessions this summer which was very time consuming for me.  She did diet training and exercises to strengthen my muscles but no biofeedback. I did the balloon exercises at home which only caused my hemorrhoids to bleed.  I am dairy free.  Only soy that I have is in my mayo.  I have muscle twitches in my legs sometimes and also have a difficult time emptying my bladder completely.  Not sure if that is neuro symptoms. Thanks for helping me problem solve. 

GF Lover Rising Star

I'll jump in here. Constipation has been a life long companion for me. All the miralax and fiber were useless to me. My internal and external 'roids' all had to be removed. At that point I took a lot of dulcolax to go to the bathroom. I had to stay close to diarrhea because of the hemorrhoids. I was also taking plaquinil for a time along with other immunosuppressants. I do believe all the years on immunosuppressive medication allowed my cancer to develop, just saying. Now, I'm as close as I will ever get to normal which is workable. Very little cheese, milk and ice cream. Lots of raisins, seeds and a stool softener every day and I do drink coffee in the morning.. The biggest thing that helped me was using a step. My muscles to push out stool are shot too. The step allows a straight chute for gravity to help. I kid you not. This has been the biggest help. I'm not saying I never get constipation any more but it is much better. I also had to learn to give myself time in the bathroom and not try to rush things. Fiber stuff never helped me and I think for me, made it worse. I also drink water through out the day which makes me pee constantly because I think my bladder is the size of a walnut!!! :)

Keep trying things, something will get you to a point where you can manage it. I never expect my body to function normally anymore, too many things are whacked. I go for as manageable as possible.

Colleen

Renaye Contributor

Thanks for the boost, Colleen.  I will keep trying.  I have a step and need to start using it.  I get up at 5:30 to go to work at 7:30 already but sometimes I wish I had more time.  I can't sleep in on weekends because I don't go if I miss my time.  I tried coffee and it bothers my acid reflux.  I have not acceptable "manageable" yet.  I am 44 and want desperately to be "normal" but it looks like I will need to settle for "manageable."

 

Thank you

Archived

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

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

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.