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Silly Folks On Psoriasis Forums
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8 posts in this topic

Because psoriasis is my most notable symptom I have been to many psoriasis forums. I have told my story and they reject the very idea that gluten-free can help! There are many scolarly articles about the connection from some very reputable doctors, hospitals and other organizations, but they STILL reject the idea. I'll see things like, "I tried a gluten-free diet for three weeks and it didn't make any difference." But we here know that they were probably using their old toaster, double dipping in the peanut butter, not reading labels, etc.

I have even explained about secondary intolerances and how it has taken me over a year to see permanent results. They see that an think, it's too hard. It seems that no matter how bad their psoriasis is, they just refuse to give up bread and other grains.

It's just so frustrating! I KNOW that gluten-free is the answer. I guess you can lead a horse to water but you can't make him THINK.

And it's sad that not only are they suffering the pain, itching, and hideous appearance of psoriasis, but they are doing damage to their bodies as well.

Oh well. I tried...

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Very frustrating. I try to just say the idea and hope that someone might make actually get tested properly for it. It's too frustrating.

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You know the saying about horses and water... you tried, that's all you can do. The whole concept of gluten free must sound pretty bizarre to others when it's been one of the staples of most people's diets their entire lives. Hopefully when more people become aware of just how sick it's making more and more people, it won't be as widely used? I tell people: be careful not to overdue the wheat in your diet, it can come back to haunt you! If they have to hit rock bottom they way we all have, then they'll change :)

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I just had a conversations with my mother in law that is pretty much the same thing. Her entire family is riddled with diseases linked to celiac and she herself has non-hodkins lymphoma which again, linked to celiac. She made a remark about my mango and I said it's one of the few fresh fruits I'm allowed to eat any more so that's why I eat so many of them. She then went on and on about how she could just never do it because it would be SO HARD.... so like, dying of cancer is easier than not eating bread? Some people will just never see reason. I mean no, I don't think we can blame everything on gluten and I doubt it would help everyone, but what is the harm in trying?

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Because psoriasis is my most notable symptom I have been to many psoriasis forums. I have told my story and they reject the very idea that gluten-free can help! There are many scolarly articles about the connection from some very reputable doctors, hospitals and other organizations, but they STILL reject the idea. I'll see things like, "I tried a gluten-free diet for three weeks and it didn't make any difference." But we here know that they were probably using their old toaster, double dipping in the peanut butter, not reading labels, etc.

I have even explained about secondary intolerances and how it has taken me over a year to see permanent results. They see that an think, it's too hard. It seems that no matter how bad their psoriasis is, they just refuse to give up bread and other grains.

It's just so frustrating! I KNOW that gluten-free is the answer. I guess you can lead a horse to water but you can't make him THINK.

And it's sad that not only are they suffering the pain, itching, and hideous appearance of psoriasis, but they are doing damage to their bodies as well.

Oh well. I tried...

Three weeks off gluten is hardly enough to start reversing anything, at best some lucky people might get relief from diarrhea and other acute digestive problems but anything else would take months, even years to heal if the damage is not too great. When I didn't know better I'd tell people to go off wheat for a week or so to see if it would make a difference, well, that might work for a few lucky ones but now that I know about "gluten detox" and have lived it on 2 occasions I know it's completely possible to feel much worse before starting to feel better. Because I've never been diagnosed I'd stay away mainly from wheat for months at a time but would eventually cheat, but the last 2 times the consequences have been more serious, especially the last time. I first stopped wheat, then the other gluten grains back in March but my progress this time has been very very slow.

I surely understand your frustration, I've felt it regarding other important things that I wanted to pass on to others, but many will not listen. These days I don't get frustrated anymore, I plant the seed and leave it up to others to choose what to do, and cold as it may seem I now feel that those that won't listen probably deserve the suffering they're in.

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Perhaps gluten can give some people psoriasis but I don't think that is my case. I do not have celiac. I am not intolerant or allergic to gluten or wheat. But my daughter was for many years. So I did eat a gluten-free diet for well over a year. No affect on my psoriasis whatever. It seems to come and go. And why? I do not know.

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I have psoriasis in my finger nails and being gluten free doesn't help with. It seems to get worse when I am in an AI flare though -so I know it is all connected.

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Gluten, soy, corn, and high salicylate foods have ALL contributed to my psoriasis. I had to ditch them all, and now my psoriasis is GONE. As I said in (in my poorly spelled) original post, SECONDARY intolerances are just as important as gluten. Julie, I would bet that the reason yours would come and go is that you ate something else you were intolerant to on those occasions it came back.

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    • thank you for the info, its very helpful to hear from someone else who has it and knows a lot about it. When you say I may be eliminating one problem vs 3, what would you think the other problems could be? It's frustrating because I even buy Uldis gluten-free bagels and what not and I still find myself reacting sometimes to that, I don't use butter but just gluten-free peanut butter, but like I said I don't know for sure if its from that or maybe something else. I have read on this site about a couple others that have had issues with uldis breads so could be that. but like you said I guess it can also just take awhile to get better. I read the other day that a lot of throwing up can put stress on your small intestine which can maybe cause your body to react to dairy, do you know anything about that or if that's true?
    • Thanks for the reply!  Yeah, I really should have gotten testing done before the elimination diet.  I had asked my previous doctor, but she didn't want to do it.  I was transitioning to a new insurance and couldn't get a doctor's appointment for awhile, so I thought I would just do the elimination diet.  After all, it might not have been gluten.  (<--that was my thought process...) Hindsight is 20/20.  I felt pretty good during those 3 weeks gluten free, and was not expecting how bad it would be when I added it back in.  Anyway, I found a new doctor and I think she would totally be willing to test me again 9 weeks out. I think she would also be willing to order the endoscopy if I brought her research and really pushed for it. Now that I know how good feeling good feels... I just can't see staying on gluten for another 9 weeks.  I honestly don't know how I would survive.  Even if it's not Celiac, and it's ONLY the wheat allergy... it's making my life absolutely miserable. Thanks again for the reply!  I think I'll go in Friday for the blood test and take it from there.
    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
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