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Renaye

Intestinal Muscle Damage

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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.


Positive DGP IgG & DGP IgA, negative biopsy, HLA typing unable to interpret, sicca syndrome, positive ANA, low WBC count, intolerant to peanuts, eggs, dairy, IBS-C, GERD.

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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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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. 


Positive DGP IgG & DGP IgA, negative biopsy, HLA typing unable to interpret, sicca syndrome, positive ANA, low WBC count, intolerant to peanuts, eggs, dairy, IBS-C, GERD.

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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


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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


Positive DGP IgG & DGP IgA, negative biopsy, HLA typing unable to interpret, sicca syndrome, positive ANA, low WBC count, intolerant to peanuts, eggs, dairy, IBS-C, GERD.

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