I don't vent often but sometimes like the rest of you I need to.

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Date Joined Aug 2007
Total Posts : 6067
   Posted 7/31/2009 10:34 AM (GMT -6)   
I have been fighting digestive problems all summer, my whole digestive system has turned on me and there isn't one part of it that works right. I had some test done almost two weeks ago that was suppose to take 2 to 3 hrs, it took my system 7 hrs. Okay, already know I have gastroparesis and my stomach doesn't work right. I have gastritis and reflux, no big surprise there. But they think I have signs of celiac disease in my small intestine. Celiac is an auto-immune disease that is triggered by gluten and destroys the lining of your small intestine and you don't absorb nutrients that your body needs. The only way to truly dx it is by doing a scope and doing a biopsy, guess that is next on my list of test. Apparently, celiac goes hand in hand with sjogrens. The only way to control it is to have a gluten free diet. I've given up most meat, fresh fruits and veggies and even some cooked veggies cause of gastroparesis so what is left if I can't eat anything with gluten in it. Thank goodness we do have a celiac forum on Healing Well but I haven't been there yet since I found this out late yesterday afternoon.
My sodium is way too low again and have got to get that up. Going to try a med that causes the system to reabsorb sodium if my stomach will tolerate the med. with the gastritis. To top that off I come down with the first cold I have had in years and I have coughed til I have my upper body in a fibro flare and have to hold both arms around my ribs to cough. The nurse told me yesterday my body is a train wreck.
So we are suppose to leave in a week for two weeks in Montana. I know my DH wants to go home so bad to see his family but right now with being nauseous half of the time, cramping the other half and not having any energy from not being able to eat much I don't see that happening. We both need a vacation from everything but I need to start feeling better and get to the bottom of these problems worse.
Okay, I have asked my doc this and he says no but can fibro affect your digestive system??? I know many of us have IBS. Our digestive system is muscles so why couldn't fibro attack that too??? It seems funny that I started having more and more digestive problems after getting fibro.
Now I feel better after telling my Fingertip Family what I've been going through all summer.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
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Date Joined Apr 2005
Total Posts : 17060
   Posted 7/31/2009 10:46 AM (GMT -6)   
Marlee, I'm not sure if fibro could cause that but I know I'm having more digestive problems and am thinking it's being caused by adhesions from previous surgeries.  I have bad pressure, bloating, and nausea.  So, maybe.... 
Also, isn't it something that most of us have other illnesses that are auto- immune but they say fibro isn't auto- immune?  I really think it is auto- immune.  Almost everything I have is auto- immune!  (Boy, did I use the word "auto-immune"  frequently!  shocked )
If you do go on the gluten-free diet, I might be able to help you.  My nephew is autistic and they have him on a gluten-free diet.  I could get some recipes and such for you.  I gave her my breadmaker and she makes him bread using rice flour...things like that.  Plus, in a lot of the grocery stores they have an area with gluten-free and lactose-free products and that would make things easier. 
I know it's a pain and it just isn't fair, but I know you will make the best of it.  I'll help you and together you just might be feeling much better soon.  Besides, some day we will get new, perfect, healthy bodies.  I've already put in for a size 8!  smilewinkgrin

Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 7/31/2009 12:50:49 PM (GMT-6)

Veteran Member

Date Joined Jul 2008
Total Posts : 1495
   Posted 7/31/2009 12:45 PM (GMT -6)   
That sounds just awful.  Can the doc get you a brace for your ribs so they won't hurt so much?  I think I would be frustrated, too.  With meat, and veggies and gluten out of your diet, it does sound at first like there won't be much to eat.  You should go ahead and visit the celiac thread.  They probably have a thing like our fibro 101 that you can use for ideas for food.
I hope you feel better soon and you can go on your vacation.  Get lots of rest, if you can with that cough.  If your cough does not let you rest, maybe you can get some codine to take a couple of times.  Prayers that you will feel better soon and be able to go.

Regular Member

Date Joined May 2009
Total Posts : 240
   Posted 7/31/2009 1:33 PM (GMT -6)   

Sorry you have been feeling so badly - stomach issues are the worst! I have been through some of this with my son and he had a genetic blood test to rule out celiac? I know I had to pay for it, insurance didn't cover it - but it spared him the biopsy.

You had asked if fibro can affect the digestive system and I had this website saved - it doesn't refer to fibro specifically, but talks about the nervous system and its influence on the gut.


Hope the rest of your summer is better :)
Fibro dx 2004, RLS, raynauds

Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1371
   Posted 7/31/2009 1:41 PM (GMT -6)   

Marlee, I am so sorry you have been feeling so bad for so long. I have a very old and dear friend, who has lived far away for awhile, we write back & forth. But in all these yrs, she never told me she had FMS till after I mentioned I was dx w/ it. I was telling her how miserable I felt w/ it and she said I should also get ck'ed for celiac. She has both and she has to be very careful w/ her diet. Her son had a lot of problems w/ adhd and foods and such growing up. They went to so many drs to get help. Finally, they put the family on a gluten free diet, it was expensive, so the son stayed on it all the time and the other three members rotated on the diet. It made a big difference in the boy's health, not so much in the other three - duh!!

Now her children are all grown, older than mine. She and her husband keep to this diet and are seeing a big difference in their lives. She plays on 2 volleyball leagues - I hurt just thinking about it, and I love VB.

I think there are so many of these stupid illnesses just seem to hit us when our bodies are down. 

Sherrine is right, there are sections in the stores for gluten free foods. I have had students w/ this and their parents always had to provide their lunches from home, no school lunches or treats. I know this is a pain, but hopefully, this diet will help you to feel so much better.

I have had several stomach surgeries and each time I was given a pillow from the hospital to hold against my stomach for when I had to cough or sneeze. I also use it when I get hit w/ costo. You could use a bed pillow or a throw pillow, whichever is closest. I have the problem w/ adhesions, like Sherrine mentioned, it's not pretty.

Personally, I think FMS worms its way into every aspect of our lives. Then again, I've had FMS all my life and I have IBS, too. They both got worse after surgeries, especially the last one. That one literally brought me to my knees. My family has problems w/ autoimmune illnesses, way too many to dismiss that they are not interrelated.

When you took your getaway awhile back for your son's retirement, you seemed to come back invigorated. Maybe you and Ken really need to get away, this has been a very rough yr for the two of you. I do hope you can manage to get away. It might be just the medicine for both of you. You know your house and the 'girls' will be cared for properly. As soon as you come back from Sherrine's and return the RV to your neighbor, you should think about packing and hi tailing it out of town. Whatever happens at Sherrine's, stays at Sherrine's. Heaven knows, collectively we won't remember anything, so we won't tell the cops where you are going. smilewinkgrin  

Joking aside, I do hope you are feeling better soon, I don't like when you don't feel well. You are too dear a lady to be feeling so bad. You are in my prayers, my friend.

God bless.  Alice.

Veteran Member

Date Joined Aug 2008
Total Posts : 1771
   Posted 7/31/2009 1:51 PM (GMT -6)   
Oh Marlee, great big cyber (((HUGS))).  I'm so sorry that you are having to deal with all of this.  I'm with Sherrine; I have lots of problems that are auto-immune, and I really believe that there is an auto-immune connection to fibro, which could help explain why you are having so many AI problems. shakehead
I'm sure it must be really hard to contemplate having to limit your diet more than you already have to.  Eating is one of the few physical activities we fibromites can do.  :-)    There are lots of gluten free products out there now (tons more than there were even 10 years ago).  My daughter is allergic to milk, and we always have to shop in the health food section of Kroger or drive to a bigger city and shop at a Whole Foods or Wild Oats.  You can find a substitution for just about any kind of food out there (pasta, bread, cookies, cereal, etc.).
I'm praying that you will feel better soon, and that things will settle down for you.  If you must alter your diet more, I'll pray that you are given the strength and wisdom to do so.  :-)
Hugs - Austen
"There is no charm equal to tenderness of  heart." - Jane Austen
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.

MT Lady
Veteran Member

Date Joined Jul 2008
Total Posts : 955
   Posted 7/31/2009 5:51 PM (GMT -6)   
Hi Marlee,
I'm so sorry to hear about what you are going through. I went gluten free about two years ago, when a doctor who practices eastern medicine along with western, recommended that I give up gluten, she felt I was very sensitive to it and it would really help the fibro, so I did it. She gave me a book "gluten free for dummies"...a VERY informative book, but...you can google gluten free and get some really good websites, with recipes. As others have said, there is so much now that you can purchase that is gluten free. Two years ago, I had to go to Whole Foods to get anything and it was very expensive. I learned how to make pizza dough that was gluten free. Okay, so it wasn't great, but at least I could have pizza :)
As it turned out, I do not have celiac. I finally went for the upper endoscopy with biopsy about two or three months ago, along with my long overdue colonoscopy and thankfully everything came back negative, so I am back to eating gluten. I don't feel any different than I did before.
Again, I agree with you and the others about autoimmune issues. I am hypothyroid and seeing an endocrinologist and even though I have my thyroid levels checked every three months, they can't seem to get my levels normalized. Needless to say, this really exacerbates the fibro symptoms. Somehow, this is all tied in, I'm sure of it. I also had asthma as a youngster which is also autoimmune.
In any case, I do feel for you. I know it isn't easy but as I mentioned, there are some wonderful products out there now. You've mentioned you live in a small town (I think??)...you can even order gluten free on line!!
take care

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.

Veteran Member

Date Joined Nov 2008
Total Posts : 2854
   Posted 8/1/2009 9:47 AM (GMT -6)   

So sorry you are feeling so badly, Marlee.  I think fibro effects every part of our body.  There are days when my hairs hurts....so why not the digestive system??  I know what you mean about figuring out what on earth is left to eat...with Meniere's my diet is so restricted (no salt, no nitrates, no MSG, no caffeine etc) then the new Legume/peanut allergy that came out of nowhere at my age...it's soooo frustrating.

What do you doctors say about you going on this trip??  Would you be able to get to medical care if you needed it once you were there??

Fibro bites big time and it is so disappointing when we have to cancel trips that have been planned for months.  I guess my advice would be is that you think you will feel the same no matter where you are, maybe a vacation would take your mind off all of this for awhile.  it's a hard one, Marlee.



fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 8/1/2009 9:54 AM (GMT -6)   
Marlee I'm so sorry you are having such a hard time right now.

My hubby has had similar Digestive problems for almost 20 years. IBS as one of them. With all the research that I have done I'm seeing a pattern to Fibro that the digestive system could be involved with this condition.

I hope they can find some solutions for you.

Kidney Diseases and Disorders
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........ I think I have it all

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 8/1/2009 10:29 AM (GMT -6)   
Thanks everyone!!! Upbeat that was a very interesting article and I know stress affects my digestive system big time and it doesn't take much to stress me. Ken had to spend much of the day out of town for a couple days this week and just knowing he wasn't available if I needed him in a hurry stressed me out. My DIL wasn't very far away and she has so many of the same problems I do, including fibro, it wasn't like I didn't have anyone to call if I really needed someone. I know I stressed over keeping the grandchildren this summer and still didn't get them all done so in the back of my mind I'm sure I'm still stressing over that. Wouldn't it be sad if stressing over doing things is making me sick and actually keeping me from doing them???
I called the doc's office yesterday to get the scope and biopsy set up and he is going to be gone on vacation all next week. So much for getting that done in a hurry. I do need to get the sodium checked again on Mon. My sodium being so low is more of a danger to my health than anything else I have.
Alice, actually it has been 1 1/2 yrs since son's retirement but oh boy did I enjoy that break from fibro, I thought I was in heaven for a couple of weeks, sadly we had to come back and go to BIL's funeral. So maybe we should get things ready this weekend and leave as planned and see how I feel when I'm away from home, if I don't feel any better or get worse we can always come back home. We have traveled so much together we have it down to a science and we both so love road trips. I want to go as much as he does but he would never go without me Dani.
My BP has been very low the past couple of days which is usually high so I ate french fries last night and a few bits of hamburger to get some salt into me and that wasn't very smart cause I started cramping really bad. So if I go on a gluten free diet and my small intenstines heal does that mean I have to give up my three king size candy bars a day??? devil This is something that has not made sense to me for a long time, how a woman in her late 50s can eat like a football player and not gain weight. Now it makes sense, the fat is not being absorbed, of course nutrients aren't either but I'm not anemic which is good. I hadn't lost weight up til the past few weeks so somethings was being absorbed.
It will be interesting when they get to the bottom of fibro and whether it is an auto-immune problem. There are so many of us with auto-immune problems.
I get down and have my little pity parties for a day or so and yes we all suffer with all our illnesses and that suffering is real but then something happens that brings me back to being grateful. I found out last night that my cousin who has been battling cancer for over a year, at the age of 57, is having new spots showing up so even though the chemo has helped some tumors she is losing the battle.
I will learn to love gluten free foods and be thankful.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

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