HealingWell
Search Close Search
☰

Celiac Disease

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/3/2008 4:15 PM (GMT 0)
In response to Rosie's post "Rheumy Appointment", I included some facts from the National Institute of Health Website on Celiac Disease. I don't know if I have it or not but I'm convinced that I do have gluten intolerance and plan to be tested for Celiac. I've talked about it here before and mention it again because once I went gulten-free, within days I felt like a new person. Here is one more fact from the NIH site that's pertinent to this forum:

"Diseases Linked to Celiac Disease

People with celiac disease tend to have other autoimmune diseases. The connection between celiac disease and these diseases may be genetic. These diseases include

thyroid disease
systemic lupus erythematosus
type 1 diabetes
liver disease
collagen vascular disease
rheumatoid arthritis
Sjögren’s syndrome"

Going gluten-free sounded like a death sentence to me, and I didn't think I could do it. But once I tried it for a week, I felt so much better that it was so worth it!

It's worth a try. All you have to do is give up gluten (wheat, etc.) for a week or two. If you don't feel any better, Yay! You can eat anything you want. But if you do feel better.....well we all know what it is to feel bad all the time, and I had forgotten what it is to feel better.
Posted 6/3/2008 8:53 PM (GMT 0)
The change after giving up gluten, soy and potatoes was astounding. I still have lupus, but the flares are not as dramatic and I actually have good days! I am allergic to so many things that giving up a few more was not as big a deal as it could have been. Worth a try!
Posted 6/3/2008 11:00 PM (GMT 0)
I have celiac and lupus and have been on a gluten free diet for almost 5 years. Right away I noticed a difference in my GI symptoms but continued to have problems. It was 1 1/2 years later that I was dx with Lupus and found out that is why I continued to have the GI probs. I don't know if being GF helps my lupus symptoms or not but I will never stop it to see nono

I'm glad you ladies are seeing a positive result, healthy eating is always the way to go yeah
Posted 6/4/2008 12:15 AM (GMT 0)
Thanks again Patty for the Celiac info. I've never seemed to be sensitive to foods . . . but I do remember feeling pretty good on a low carb diet a long while back. I really should try this gluten free diet . . . AKKKKKK I love my breads and potatoes!!! Lots of folks on the Crohn's board are helped by the gluten free diet too!! Blessings!
Posted 6/4/2008 1:55 PM (GMT 0)

I hope you don't mind me jumping in on this thread.  This is something I have been considering for a bit too.  There is some anectodal records that imply that gluten free can help with MS.  I was wondering how did you feel better?  Does that make sense? I do have GI problems but it is in the form of chronic constipation.  I am not thinking gluten free will help with that.  I am already totally dairy free - that is a bit more of a mainstream diet change for MS.  So, anyway, tell me how exactly you felt better so I can decide of this is something I should consider.

Thanks for your consideration!  Good luck to you all.

Posted 6/4/2008 7:17 PM (GMT 0)
Hi Gretchen, Hopefully some of the folks who know about gluten free will be able to answer your questions. Just want to suggest that if your thyroid levels aren't right, it will cause constipation. Is your thyroid ok? Has it been checked recently. Hypothyroid can cause you to feel cold, constipated, tired and achy. Glad you posted!! Blessings!
Posted 6/4/2008 8:31 PM (GMT 0)
Hi Gretchen, the only way a gluten free diet helps me is with my GI problems as I have Celiac disease. I have never seen an improvement in my lupus symptoms and I've been gluten free for almost 5 years, long before I was dx with Lupus. Of course I have no idea what my lupus symptoms would be like if I was on a normal diet.

You are right about a gluten free diet not helping constipation, it's especially hard to get fiber when most of the grains are eliminated (wheat, rye, barley and oats).

I am sure there will be others along shortly that will be more helpful. Take care and I hope you find some relief of your symptoms. :-)
Posted 6/4/2008 8:38 PM (GMT 0)
Pat, do you eliminate just wheat from your diet or gluten (which is a protein in wheat, rye, barley and oats)? You probably do not have to be as strict as I am because I have celiac but I'm still curious.

I am also curious where you see the improvements (i.e joint pain, fatigue level, etc)?
Posted 6/4/2008 11:32 PM (GMT 0)

Hey AlwaysRosie and jhmom,

Thanks for your reponses.  My thyroid is fine.  The constipation is caused by the MS.  I have multiple spinal lesions and they have caused some paralysis in my small intestine.  Things just move really slowly and too much water is absorbed.  It is thought that there are some proteins in gluten that may cause the t-cells to go on the move causing more damage in MS.  It is just a theory but I have no way of knowing if this is something that may help me.  

I take freakish amounts of fiber both supplemental and through fruit and veggies.  So going off gluten won't make things worse for me.  I was just wondering what made you think you were better off without gluten.  Like jhmom said, joint pain, fatigue or any other reasonably measurable results.  I am sure there is no easy answer here for me lol.   

This is a nice board!  Thanks again for your help.

Posted 6/5/2008 2:06 AM (GMT 0)
Hi Gretchen,
I have severe allergies. Even though I tried very hard to avoid all known triggers, I was still having a lot of problems. And, of course, once the allergies would start, the lupus would flare. My PCP and allergist both suspected celiac, once the rheumy came on board, I began avoiding all gluten. I already can't eat peanuts, raw fruits and vegetables, nightshades, tree nuts, spices and probably a ton of other things I am forgetting to mention.
The first improvement I noticed after going gluten, soy, and potato free was a reduction in the overall swelling of my entire body. I used to look like my skin was stretched over my skeleton. It looked like my skin was too tight. That disappeared almost overnight. Within a few days, my energy level began to climb, and my many GI issues were resolved! After a few weeks, I began to notice that I just generally felt better! After a couple of months, I decided to test the entire thing by eating one bowl of oatmeal. Oh man - I won't ever do that, again! I was very sick - for days.
If you decide to try it, make sure you get lots of fiber! I can eat rice and corn chips. And I have made gluten free bread (not easy as many of them substitute soy or potato for the wheat and I can't eat them, either). I have yet to find a bread that comes anywhere near the good stuff but it's worth it for better health!

Good Luck and take care!
Posted 6/5/2008 2:30 AM (GMT 0)
Thanks for the info Patty, How are you doing anyway? I haven't been around much and have messed so much. Iwould do anything to find smthing that makes me feel better. I just 1 week ago stopped the sugar substitutes but havn't noticed any difference yet. I'm thinking of trying some type of yoga for relaxation and breathing exercise. Not that ,that has anything to do with gluton but I'm up for anything at this point.
love ya
carol
Posted 6/5/2008 1:55 PM (GMT 0)
Carol, I've been doing real well. Thanks for asking. How about you? You've been having such a rough time.

Gretchen, I cut out all gluten (not just wheat), diet cokes, and sugar on the same day and within a week had much more energy, less joint pain, less body aches (skin and muscles) and a general sense of well being. I've since added back diet cokes (bad Pat!) and some sugar. I buy a lot of food at our local health food store (wish we had a Whole Foods!) and eat fruits and veggies and lots of legumes. If I lapse on my gluten, the next day I feel like crap.
llI don't think diet coke and sugar affect the waylllllll I feel. I just think they are bad for our bodies.

Happy eating, friends!

Love,

Pat
Posted 6/5/2008 2:17 PM (GMT 0)
Hey Gretchen . . . . Wow . . . that's sounds brutal. The things we don't take for granted!! Just a thought . . . do you know how to do the tummy spiral to help "move things along" . . .? I learned it from a young mom who had to help her baby (spina bifada) get the intestinal rhythm going to help him make his bm's. If you are doing this to yourself, use your right hand and place it on/under your right lower abdomen and drag your hand in a horseshoe up the right side of the abdomen, over the top and down the left. Picture the large intestine. It runs in a horseshoe . . . you are helping your bowel rhythm get going. It helps if you already have the urge to go . . . Sorry if this was TMI . . . hoping it might help. Blessings!
Posted 6/6/2008 1:29 PM (GMT 0)

NO NO NO not tmi at all!!!! It is very interesting!!!  Thanks so much.  On a lighter note, I had an appointment with my neuro yesterday ( I go very 6 months for a check up) and all seems to be quiet on the lesion front!!!! It has been a good year for me with very minimal progression.  She is even going to let me skip my yearly MRI until next summer unless I flare between now and then.  I don't mind MRIs but I had the thought of that die being injected!  It is pretty nasty stuff.

Anyway, thanks for all the responses and help.  Is that the name? Tummy spiral? I would love to know more if there is more to know lol.

Love and prayers,

Posted 6/6/2008 9:03 PM (GMT 0)
Gretchen . . . no . . . that's not the name . . . LOL . . . I just call it that! I've never heard any other bit about that . . . but it works on baby's and on adults!! If I can find anything, I'll post it in this topic. Blessings!
Posted 6/6/2008 9:12 PM (GMT 0)
Here is one Gretchen: http://ezinearticles.com/?How-to-Massage-Your-Colon-for-Constipation-Relief&id=298062 Blessings!
Posted 6/6/2008 9:20 PM (GMT 0)
hmmmmm I have never heard of this, it's very interesting. I have a lot of pain under my left rib and I can feel "things" (gas, etc) move through my colon... it's very weird.

Ironically after 2 colonoscopies I've had two different doctors tell me that I have a "loopy / twisted colon" it sounds like this massage would really help me. Thanks Rosie
Posted 6/7/2008 1:19 AM (GMT 0)

Wow!  Thank you so much!  This is so helpful.  I am going to try this.  AlwayRosie, thanks again for all your help and support here.  Stacie/jhmom, I love, love, love your quote.  It is so beautiful and such a good reminder.

Love and prayers to all of you.

Posted 6/7/2008 7:19 AM (GMT 0)
The tummy twister--oops I mean spiral (I just went back to see if I got it right and I didn't), is something I'm going to try to remember. In fact, I'm going to write it down. I've got slow motility issues from scleroderma so this is not TMI for me either! Thanks, Rosie. You are always a fountain of information and tidbits of off the wall helpful remedies that are just what some of us are looking for. How do you do it??? Hope your break from UC is continuing.....

emmie
Posted 6/7/2008 10:21 PM (GMT 0)
Gretchen, thank you I love the quote too. You are right it is a good reminder and I hope all that reads it feels the same way, especially with all we deal with from day to day.
✚ New Topic ✚ Reply