PDA

View Full Version : gluten free diet and lupus



tgal
01-03-2013, 04:58 PM
Hello to all of my family members. I wanted to take a moment to write a post to clear something up. We have a topic that seems to be getting a bit "muddied" in several threads and I feel the need to make sure that everyone is clear on something.

There is no diet, Gluten Free included, that cures or has even been shown to improve Lupus itself. The only things that the Lupus Foundation says for us not to eat are Alfalfa sprouts and the newly added garlic (I know! I know! How do we survive without garlic?). We get in the habit of lumping all of our illnesses and pains into the "Lupus" category when in truth many of us have what we refer to as "overlapping diseases". What we may assume is our Lupus acting up may very well be some kind of GI issue (which is common) and SOME people and their doctors find that a gluten free diet will help with those issues. It doesn't work for everyone and is not the right decision for even all of those so all major changes to your diet should be discussed with your doctors. If you begin to have long term trouble with your GI system that you and your doctors are sure have nothing to do with your medications it is time to get to a gastroenterologist and and check for IBS or even to make sure that you don't have inflammation in your GI tract causing Colitis or even Crohn's.


I just wanted to clarify the gluten/Lupus tie that seems to try to be emerging within some of these threads. Truth is, there isn't one. That doesn't mean that some people may not do better on a Gluten Free diet but that is more of an individual thing then a Lupus thing. Please also remember that some foods not only can bother your body they can interact with your meds. so, once again, always consult your doctors before making major diet changes

finally_thin
01-03-2013, 07:16 PM
I totally get what you are saying-I had other health issues before Lupus-and I am hoping that by going gluten free-I will get rid of some of those-I DO understand Lupus is never going away.....I just want to live healthier for me-cause the last year has been a PIT$

tgal
01-03-2013, 07:36 PM
Just to be clear... That wasn't just at your thread. There have been a lot of threads on the subject lately so I just thought this was the easiest way to clear that up. Nothing ever wrong with getting healthier

steve.b
01-03-2013, 07:44 PM
as one who suffers from ibs.....
i want to add my 2 cents worth on the subject.

i have seen numerous doctors and dieticians to try to sort out my problem.
i have spent hours researching it.

most of us can benifit from a dietry change,
many of our health issues can be reduced by these changes.

but.........
lupus cannot be controlled by diet.

i am a strong believer in the fodmap diet.
i will talk to anyone about it.

but.........
lupus cannot be controlled by diet.

time to climb down from my soapbox.

tgal
01-03-2013, 08:09 PM
as one who suffers from ibs.....
i want to add my 2 cents worth on the subject.

i have seen numerous doctors and dieticians to try to sort out my problem.
i have spent hours researching it.

most of us can benifit from a dietry change,
many of our lupus related health issues can be reduced by these changes.

but.........
lupus cannot be controlled by diet.

i am a strong believer in the fodmap diet.
i will talk to anyone about it.

but.........
lupus cannot be controlled by diet.

time to climb down from my soapbox.

while I do know the new diet has helped you a lot (and am glad for it) diets are a topic we try to stay away from on here (as you know). I take responsibility for opening it up but it seemed easier then answering about the same type of diet in multiple posts.

Diets are just so individual and each so unproven that there is no way we can say what works and what doesn't other than to state what the Lupus Assoc says without verging on "snake oil" territory. I do know there are things that help different people it is just that this is a topic best discussed with your doctor since it can vary so much depending on different diseases and medications

finally_thin
01-03-2013, 08:13 PM
Just to be clear... That wasn't just at your thread. There have been a lot of threads on the subject lately so I just thought this was the easiest way to clear that up. Nothing ever wrong with getting healthier

No worries-I did not think at all it was directed to me. We have to try something....this year has taught me that meds are not bad and change can be good....it has been life changing lol

Corella
01-04-2013, 02:54 AM
I used to suffer permanent thrush, excruciating pain and bloating after meals followed by exhaustion and it was only when I decided to go GF, that I realised just how much my old diet was hurting me.

I slipped up and ate some sage/onion stuffing on xmas day which contained breadcrumbs in it and the pain I was in was bad enough to nearly make me go to hospital, like a shooting pain in my bowel going high up into my rib cage.

I have found a GF bread that I love and I also enjoy the GF pasta, and it has helped with many of the symptoms including bloating - no more bloating for me, thrush has all but gone and I dont feel drained after meals. I have small but frequent protein snacks like little pieces of ham/meat.

I cant imagine any different now, and I have given up alcohol prior to starting the MTX so I have been over 4 months without a drink now - which hasnt been that easy to be honest but going GF has changed many things and for the better.

Shine
01-04-2013, 03:23 PM
I am seeing a nutritionist but before I started my appointments I said to myself that if she started suggesting too much that diet would "get rid of my symptoms" or "control the disease" I would be outta there.

Thankfully she has been very helpful and our aim together is to improve my general health and well being in the hope that it will give me a boost of energy/ease fatigue, help me lose some pred weight and if anything helps with lowering inflammation or easing digestive issues in the process then that is a bonus...but the aim is to improve *general* health in a way that won't interfere with any medications.

If anyone is seeking nutritional help I think it is important to be positive about the potential benefits but also clear in the understanding of its limitations. A good nutritionist will tell you to report everything to your doctor and suggest any allergy testing is done by a medical practitioner, they will be clear about how 'proven' a source of info is and let you take the lead and decide what changes you make. They will also be insistent that they have nothing to do with the medications you take, other than to ensure any recommended supplements or foods do not interact with them.

I do think tackling food issues is a good idea though...every little helps.

magistramarla
01-05-2013, 02:40 PM
While I'm not doing any special diet, other than cooking and eating fresh, whole and mostly local foods, my daughter has had to go completely gluten free.
She has a positive diagnosis of Celiac, and is lactose intolerant as well.
She just had a baby - Maya - in October. She recently started going back into the office for a few hours, leaving Maya with Daddy - Steve.
Steve was armed with several bottles of breast milk, since Maya has had nothing but that so far.
The first evening when she got home, she noticed a red hive-like sore spot on Maya's cheek. Steve couldn't explain it, and it faded that evening.
The following day, when Hillary got home the spot on Maya's cheek was back and worse.

They started researching, and realized that the spot was indeed a hive, caused by contact with gluten. They finally realized that Steve had been snacking on cheese and crackers just before he fed Maya. He was kissing her little cheek while he was giving her the bottle. Poor guy! He felt so bad.
Hillary checked with a pediatric allergist, who confirmed that Maya's hive was a reaction, most likely from contact with gluten.
It looks like Maya is going to have to grow up gluten free.

I was familiar with this, since I once babysat a little boy who had the same problems. Any contact with gluten made him have hives, and made his eczema get worse. I was running an in-home daycare, and I had my work cut out for me to keep other kids from sharing snacks with Jason.
I thought that you might be interested in this story.
Hugs,
Marla

BTW, I don't know how I could live without garlic and pasta. So far, neither of them seem to bother me, so I hope that continues.

tgal
01-05-2013, 03:45 PM
Let's be very clear. This post is NOT saying that there are not people that do not need special diets. It was simply to answer the question about special diet needs for Lupus patients, Gluten free included. Of course some people have a sensitivity to some things, gluten being one of them, and those should be looked into by the doctors, but it isn't a proven Lupus issue.