Welcome, Guest
Username: Password: Remember me

TOPIC: Gluten!!!!!!!

Gluten!!!!!!! 7 years 2 months ago #29673

  • kaluebke
  • Offline
  • Posts: 15
  • Thank you received: 1
Has anyone tried going gluten free? My numbers are dropping again and I can't deal with the answer that there's nothing I can do but put my body through steroids or ivig again. When I was first diagnosed a little under 2 years ago all the research I did got me no where. Recently my mother was reading a book and it said that most autoimmune diseases or disorders are caused from a gluten sensitivity. Since hearing that I've done more research and there are boat loads of studies that coincide, has anyone ever tried cutting gluten from their diet for their itp? After reading some of the studies I've decided it's worth a shot but just wanted to know if anyone else has had success or failure??

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 2 months ago #29678

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
Diet changes are hit or miss. Sometimes it can make a difference, sometimes not. Part of the problem is that it takes so long to see a difference and people might have treatments in that time. If they do, you can never be sure which caused counts to rise.

I have also recently gone gluten free for another autoimmune disorder. It's hard to do.
The following user(s) said Thank You: virginia@branscomgreen.com, firkins

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 2 months ago #29682

  • nrcoach
  • Offline
  • Posts: 32
  • Thank you received: 1
Just read the same thing and I'm gonna give it a try....along with a quasi Paleo diet

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 2 months ago #29684

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
My opinion - not science but personal and anecdotal experience - is that if your diet is causing you gut problems and inflammation, then fixing that could have positive impacts on your immune system.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: hcpratt33, jpatenaude, Mwalkernc

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 1 month ago #30005

  • kaluebke
  • Offline
  • Posts: 15
  • Thank you received: 1
Thanks everyone for your response, I decided to try the gluten free diet and figured it could hurt. I'm glad I I'd though I've been gluten free for a month now and my numbers went up for the first time without any drugs or treatments I'm up to 102,000, I can def live with that!

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 1 month ago #30011

  • John
  • Offline
  • Posts: 148
  • Thank you received: 30
Still gluten free! I don't think gluten as an allergen will necessarily cause ITP on its own , but when combined with other factors, it will likely exacerbate your ITP. My gut has never felt better. GL.

cheers,

john

P.S My gluten free journey started about a 1 1/2 years ago.

www.pdsa.org/forum/8-natural-treatment-methods/16325-treating-itp-through-diet.html

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 3 weeks ago #30565

  • nvsmom
  • Offline
  • Posts: 3
  • Thank you received: 1
I developed ITP as a young adult, and I suspect that gluten may have been a factor in how accute it was for me (nothing would keep my numbers up). I was an undiagnosed celiac (which is an autoimmune disorder and not an allergy) and as such I was eating gluten and causing high levels of inflammation to occur in my body. I sometimes wonder if they had diagnosed my celiac disease at age 7 instead of 37, if I would have developed ITP or my other autoimmune disorders... or if it would have been delayed at the very least.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 3 weeks ago #30574

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
Hard to say NVS. I play that game all the time - what if I hadn't done this or that....gets you nowhere. All you can do is go on from here.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 1 week ago #30795

  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
  • Posts: 687
  • Thank you received: 121
Hmmm..... Maybe this would be a good time for me to try this. My father has celiac spruce And I have tested positive for anti gliadan antibodies. But my stomach biopsy was negative so the gastro doc said I don't have it. But maybe my chronic stomach probs would get better and it at least couldn't hurt my platelet counts.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 1 week ago #30796

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Making your chronic stomach problems better for sure might help. I think it helped me (Rituxan too so can't say for sure.) But inflammation can trigger immune responses and our bodies have weird immune responses. My intestines were chronically inflamed.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: dru

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 7 years 6 days ago #30824

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
You don't have to have a proven gluten allergy like Celiacs to have a gluten sensitivity. I think many people have the sensitivity and don't realize it.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31222

  • Katsim
  • Offline
  • Posts: 217
  • Thank you received: 25
I started a gluten free diet back in December when I was first diagnosed - my paternal grandmother had full blown coeliac disease and I was surprised when I researched & found out that it was an autoimmune disorder rather than an allergy. I had always thought it was the latter. Anyway - my haematologist agreed that it wasn't a bad idea to try a gluten free diet. I started to respond better to Ivig once I was on the diet and was feeling ok - although still having Ivig every few weeks. Fast forward to the end of feb - my daughter turned 2 (had a really fun few days with her!) and I had a 5 day gluten binge with birthday cake, party sandwiches etc. I threw caution to the wind!

And then had diarrhoea (sorry for the tmi!) for two and a half weeks. Its just about getting better now. My highest platelet count since the beginning of dec (204) dropped to 60 in a week - my biggest drop since this ITP journey began in terms of percentages and I've felt awful. I've added a number of probiotics and live cultures to my diet this week to help my gut recover and I'm back on the gluten free wagon.

I'd be interested to hear how everyone who is new to the diet is managing with it. I won't lie - I'm finding it hard. But in a weird way, I feel better having had a bad reaction to reintroducing it. Whether its an intolerance or immune response, I clearly don't tolerate gluten very well. I'm trying to think long term and hope that this has a positive impact on my ITP.
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31225

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
I dropped the ball. I couldn't do it. The problem was that I tried Paleo which cuts out too much, too fast. No gluten, no dairy, no carbs, no legumes.

Now I am just spinning around with where to go. I have to start somewhere, but am not sure where. The more I read, I keep finding that this is bad or that is bad, pretty soon you can't eat.

My goal is to reduce Lupus and RA inflammation, not to raise platelets. Two weeks ago I read about benefits of cayenne pepper and decided to add that to V-8 daily. I drank it for a week and never had so much pain in my life. I didn't connect it until a friend with Lupus started to discuss nightshades and then it hit me. I stopped and started to feel a bit better. So, I think I need to start with nightshades (which I love), and then gluten.

I never believed that food made a difference in health until the past few months, except for staying away from fast food and processed food. The more I read, the more convinced I am. But everything seems to be unhealthy and you're left to starve.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31239

  • alicein
  • alicein's Avatar
Sandi,

I always recommend people start slow and don't attempt to follow specific diet plans. Although our family basically eats paleo, we are flexible with it so as not to hit the "I can't do it" stage. Small changes can make huge differences.

In general, foods that cause inflammation are the nemesis of all disease. The nightshades are king (and queen, prince, and princess) when it comes to joint and muscle pain. And dairy is the other. So why not just start out avoiding potatoes, tomatoes, and peppers? Removing nightshades is a whole lot easier then gluten. When it's feasible, maybe substitute an alternative milk (I remember you don't like coconut milk) when you're cooking things that call for milk, etc. Maybe limit your dairy to hard cheeses (little to no whey in them) or fermented dairy (yogurt, kefir, sour cream, buttermilk). In other words, still use some, but smaller amounts in forms that are better for the body (fermented). If you eat bread, just do it once or twice a week. Cutting back is still better then every day. In other words, do what you can and don't beat yourself up.

And if you really can't do any dairy subs right now, then just start with the nightshades. You will be very surprised how much better your joints and muscles will feel in general. And maybe in 3 mos. you can see if you feel like you can completely pull dairy. If not, you do what you can. Limit where you can.

You know how it is as a mom - you'd jump off a bridge for your kid. We went cold turkey removing 40 foods literally overnight. It was overwhelming. I don't recommend it. I had to fish through all of the same info you're reading right now. And it's an enormous amount. I picked the few places that I trusted very much (which will be vastly different from your sources I would imagine) and just used those places unless my reading really sent me desiring to search somewhere else for more info. I sought out friends that I trusted whom I knew were healthy and asked them where to start. From there, it was easy to take off. So maybe find a few people you trust and ask if they have places you should start your searching.

I think there is one basic rule to follow when it comes to health and healing disease - eat everything as close to the way God made it as possible. Avoid high fructose corn syrup as if it were the plague (another major inflammation producer - besides all it's other bad effects). Even corn syrup is better! LOL! :sick: So if you just begin cooking a whole food diet, you're still going to be better off, even if you don't remove gluten or follow a paleo diet.

But if you can do one thing, then just do the nightshades. For your lupus, it will give you the biggest bang for your buck so to speak. For potatoes you can sub quinoa, rice, and millet.

patti

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31242

  • CindyL
  • Offline
  • Posts: 1192
  • Karma: 1
  • Thank you received: 131
I could never give up my milk!!!!! Love it too much. Ice cream, I could take it or leave it.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31244

  • 2Jacks
  • Offline
  • Posts: 32
  • Thank you received: 5
We've started making slow dietary changes. We've cut dairy (substituing Coconut Milk/Cream) and I'm trying to get rid of as much gluten as possible. I've bought a juicer and am hoping that having my husband drink anti-inflammatory juices twice a day will help with the ITP. We're also back on the Greens Plus so hopefully that will help to alkalize his blood a bit.

Now I just have to figure out how to cut out his daily sandwhiches piled with cold cuts!

Sandi - I don't know if you've read The China Study - it was recommended to me by our massage therapist. I've just started it so I can't really comment on the content but so far it's making sense.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31250

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
Patti:

Yes, I think I do need to start with the nightshades. I can't believe how much the V-8 and cayenne pepper affected me. For most people, it would be a healthy thing to do. Not me. Inflammation was at an all time high. That is the first time I really saw a highly noticeable connection with food. I need to get the joint swelling in my hands to go down before I lose total use of my fingers. I am having allergic reactions to all of the prescribed meds.

I can do without dairy. Almond milk is fine for me. I do love cheese though but I can be fine with a good hunk of cheddar once in a while.

Gluten will have to be a slow move, like you said. I have a juicer but got lax with making the juices. I have to jump back on the wagon and get serious. No, I didn't read the China study but I did recently watch The Science of Healing on Netflix. It was pretty convincing.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31251

  • alicein
  • alicein's Avatar

2Jacks wrote: We've started making slow dietary changes.

Now I just have to figure out how to cut out his daily sandwiches piled with cold cuts!


If he's not willing to give up his sandwiches (my husband wouldn't!), what about switching to the hormel non-nitrate lunch meats? They are more expensive, but probably a lot cheaper then a doctor in the long run. :) Baby steps.......

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31252

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
For cold cuts, consider some of the fake, vegetarian sliced lunch meats - they taste pretty good and can be found in most supermarkets. I like the bologna flavors but turkey is good too.

Another dietary change folks might want to look into is called the FODMAPs diet. If you notice that apples or apple juice upset your stomach (usually lower end upset), please consider this diet. You might be overly sensitive to certain sugars. This can result in chronic inflammation of your intestines which can exacerbate an autoimmune problem.

It's clearly a YMMV (your mileage may vary) situation. I live on hot peppers and have no problems, but a glass of apple juice and I have D for three days.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: Rmaxwell

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31253

  • 2Jacks
  • Offline
  • Posts: 32
  • Thank you received: 5

alicein wrote:

2Jacks wrote: We've started making slow dietary changes.

Now I just have to figure out how to cut out his daily sandwiches piled with cold cuts!


If he's not willing to give up his sandwiches (my husband wouldn't!), what about switching to the hormel non-nitrate lunch meats? They are more expensive, but probably a lot cheaper then a doctor in the long run. :) Baby steps.......


That's been my starting point. I'm also thinking of roasting my own non-hormonal meats on the weekend and then carving them for sandwhiches. The Salami might have to go away (and it likely should anyways - not the healthiest of choices to begin with!). I decided this morning that instead of the cheese he adds he's going to start getting Avocado on there instead. I guess I'm back to making his lunches for him to ensure the health content is there. :whistle:

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31254

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
Erica:

You just spun me around some more, GF! Fruits are one of the few things that are my list of 'can do's', now you have me worried that I'm sensitive to that too. I honestly have no idea what is good and what is not. Since it takes so long to notice improvements with elimination, it's hard to ever know what is the root cause. I am also very sensitive to any and every weather change, so I can't tell if I'm reacting to weather or something I ate. I actually did blame the weather on my flare last week until my friend brought up nightshades. Then I had a real smack the forehead moment.

I feel like I'm fighting something invisible. I'm really at an all time low and can't seem to fight my way back.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31255

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
I'm going to move this to the Natural Section.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31256

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Sandi,
One idea is to try an elimination diet - for just a few days or up to a week. Knowing it isn't forever makes it more bearable. What are a handful of foods that are more than likely 'safe'? For me, white rice, proteins including poultry, eggs and seafood, spinach. Coffee and tea. Anyway, whatever they are, try eating just that for just a few days. Then add foods back in a little at a time.

If you aren't having (lower end) digestive upset from fruit, then you probably aren't having the same problem I did.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31267

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
No, this is not a digestion problem. I am reading that improvement from elimination can take months, especially with gluten. So how can a person possibly know what is helping? I have so many symptoms and side effects anymore that I can't sort anything out.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31268

  • firkins
  • Offline
  • Posts: 139
  • Thank you received: 18
I tried a gluten free diet, too (for me, not my ITP daughter) as I have 2 comparatively minor autoimmune issues (Hashimoto's & lichen sclerosis) -- Didn't help me that I could tell and, even after quite a while on it, I felt worse.

Two things that I've found helpful:
1. A great recipe resource for either gluten free or just plain good "clean eating" -- magazine called CLEAN EATING that a friend gave me. Has index listing gluten free recipes. All recipes are great, easy to make (under 30 mins), use fresh clean foods in new ways. I'm a lousy cook but now we eat really well! Subscription is inexpensive and the website is fabulous to find recipes for whatever's in your fridge. Highly recommend this for an easy way to eat more healthy. check it out.

2. A Smart Stick by Cusinart that my aunt gave me. Sounds silly but I love this damn thing! I can now make really healthy smoothies in two seconds flat with little clean up. No juicers or blenders. Makes eating better easier so then I actually do it!

Sandi -- hope you feel better soon --
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31271

  • alicein
  • alicein's Avatar
On the contrary, Sandi, if you remove a food you should know within 30 days if that's going to make you feel better. And for people with severe reactions to foods, sometimes they'll know within a week. It really doesn't take that long to tell if your body is having a bad reaction to a food. While it's true it takes a full 30 days for a food protein to leave the body, the actual "feeling better" part of removing a food should happen quickly. But you are correct about weather changes and being able to tell what's doing what, etc. I know someone else in the very same position - she finally started using h-pathy because then it no longer mattered if she was allergic to something. But in terms of nightshades, I think you've figured out that it does make a difference and starting there is still the best place for joint/muscle issues.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31297

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
Ok...back to the salad today. Lettuce, radishes, onion, eggs, tuna, sea salt and pepper almonds, and vingear and extra virgin olive oil dressing.

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31301

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Make these gluten free cookies I posted a while ago. Just made them and omg so good. 1 cup peanut butter, 1 cup sugar, 1 tsp vanilla nad one egg. Oven 325, cover cookie sheets with parchment paper. Put small blobs on paper and flatten with a fork, makes 24 cookies. Bake 10-12 minutes (mine took 13). Let cool. So good! You can live on these :)
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: Mwalkernc

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31310

  • alicein
  • alicein's Avatar

eklein wrote: Make these gluten free cookies I posted a while ago. Just made them and omg so good. 1 cup peanut butter, 1 cup sugar, 1 tsp vanilla nad one egg. Oven 325, cover cookie sheets with parchment paper. Put small blobs on paper and flatten with a fork, makes 24 cookies. Bake 10-12 minutes (mine took 13). Let cool. So good! You can live on these :)
Erica


Oh man! I used to make those when we were GF. YUMMY! I might have to make them again. :)

Please Log in or Create an account to join the conversation.

Gluten!!!!!!! 6 years 11 months ago #31316

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2346
Thanks! I may try that this weekend!

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo