Possibly eliminate wheat from diet ?

[Whittlesey]

Wondering what GCA, PMR survivors think of this ?

Hi Group,

A new site a friend has recommended seems to conclude that wheat may well contribute to autoimmune conditions. Since both GCA and PMR are autoimmune, it would seem a good idea to try to reduce or eliminate wheat from the diet, for those that can or want to. I have been trying, at first with little success. I have kept at it and can now go for days without wheat, in its many, many forms, which are available. I am reading this article now and this does seem to support this. Am sending some pertinent parts. It is technical, but this seems to be one of its main points, – to change from eating wheat, to – buckwheat, quinoa, and amaranth (would think other starches such as sweet potatoes, potatoes, etc.). Offering it to the group as an assist, as we try to get through these stressing diseases. And of course, you know, to check with your doctor, etc. But this may help. Thanks,

best, Whittlesey

The site: snt148.mail.live.com/defaul...

They say “. . . Other factors such as exposure to NSAIDs like naproxen or aspirin can profoundly increase intestinal permeability in the non-celiac, rendering them susceptible to gliadin’s potential for activating secondary adaptive immune responses. This may explain why, in up to 5% of all cases of classically defined celiac disease, the typical HLA-DQ haplotypes are not found. However, determining the factors associated with greater or lesser degrees of susceptibility to gliadin’s intrinsically toxic effect should be secondary to the fact that it has been demonstrated to be toxic to both non-celiacs and celiacs. . . .

. . .

Eliminating wheat, if not all of the members of the cereal grass family and returning to dicotyledons or pseudo-grains like quinoa, buckwheat and amaranth, may help us roll back the hands of biological and cultural time, to a time of clarity, health and vitality that many of us have never known before. When one eliminates wheat and fills the void left by its absence with fruits, vegetables, high-quality meats and foods consistent with our biological needs, we may begin to feel a sense of vitality that many would find hard to imagine. If wheat really is more like a drug than a food, anesthetizing us to its ill effects on our body, it will be difficult for us to understand its grasp upon us unless and until we eliminate it from our diet. I encourage everyone to see celiac disease not as a condition alien to our own. Rather, the celiac disease condition gives us a glimpse of how profoundly wheat may distort and disfigure our health if we continue to expose ourselves to its ill effects. I hope this article will provide inspiration for non-celiacs to try a wheat free diet and judge for themselves if it is really worth eliminating.

REFERENCES * Genome screening of coeliac disease [7]

[1] Lebenthal, Emanuel, David Branski, “Celiac Disease: An Emerging Global Problem”, Journal of Pediatric Gastroenterology & Nutrition, Philadelphia: Lippincott Williams & Wilkins, 2002,

journals.lww.com/jpgn/Fullt... Disease: An Emerging Global Problem.4.aspx, accessed April 2008.

[2] Richard Logan is responsible for first introducing the "Celiac Iceberg" metaphor in 1991

cureceliacdisease.org/wpcon... 2.pdf

”more references listed in the article. Site is listed above.

[PMRpro Ambassador]

I developed PMR at a time when I was eating a wheat-free diet and - since I lived in the UK at the time - was forced to eat gluten-free foods as finding just wheat-free food is almost identical with regard to the problems. I now live in Italy where I can get bread made from pure rye, kamut and spelt and I eat them despite the fact the latter two are ancient forms of wheat. So my wheat-free diet didn't protect me then and I feel no different now I am eating forms of wheat. Since pred I can eat small amounts of ordinary wheat without problems - I develop an extremely itchy rash some time after eating any quantity.

Yes there are a lot of sites out there telling us all sorts of things about wheat-free/gluten-free. But many of them have an agenda: to sell their product, be it a book or foods. I'm not arguing the idea that wheat/wheat gluten can be implicated in many problems if you are allergic to something in it. In my case it isn't the gluten. I know that because in the UK gluten-free used to include washed flour where the gluten has been chemically removed - I reacted to that too.

It may help other things - apart from anything else trying a low carb diet will help with the weight gain and possibly delay or prevent any pred-induced diabetic problems and is worth trying. It is also suggested that can reduce gastric reflux.

But be warned - you will take much longer to do your shopping because of reading EVERY label and most wheat things are in disguise and there is more food preparation. Most carb wheat/gluten-free foods on the market are VERY high in calories and are expensive. I buy almost no pre-prepared food - butcher's meat, tons of vegetables and I cook it all from scratch. There are only the two of us so it isn't too bad for me - but I never eat cakes/baked goods and it is very hard to eat out, especially in the UK where they don't list things separately on their allergy lists: a meal including a burger is not wheat-free because of the bread bun. Most salad dressings in the UK contain wheat. Surprisingly for the land of pizza and pasta, it is much easier here in Italy - they all know what is in their food and many restaurants have gluten-free pasta available on request, my pizzeria in the village makes gluten-free to order.

And if it has caused some damage to the autoimmune system it will take quite a while for it to recover. It can take years for the gut damage in coeliacs to heal and reintroducing even small amounts by accident will resurrect the problem if it is true - it is for life.

[Whittlesey in reply to PMRpro]

You have good information PMRPro. Wasn't aware that Italy does this. It would seem then that some of their breads are gluten free and are made from the ancient grains. I know everyone reacts differently. When I stay strictly on this anti inflammatory diet, with as little wheat as possible, I feel better and need much less prednisone. There is a neurologist in the city who swears by this diet (and he has no major health factors and has lost about 30 lbs on it). He is a researcher in Seacaucus, New Jersey. I find it difficult, especially, no bread and no milk. Lately I have worked on the no bread and no milk, and I feel better. This article also speaks of the ancient grains, that apparently the body handles in a better way. I offered the article because it is the first one, that I had found that said exactly what ingesting these wheat grains can do to the body. This does correspond with my experience. It may not correspond with everyone's. I am one of the GCA survivors who would like to add diet control, in addition to medication for survival and solution to these auto-immune diseases. And I agree that damage to the auto immune system can take awhile to repair. My idea is that if we can avoid it in the first place, we don't have to deal with it.

Thank you for your comments. Your information on England and Italy, I found very valuable.

all my best, Whittlesey

[PMRpro Ambassador in reply to Whittlesey]

Spelt and kamut are NOT gluten-free though - despite the fact some people will try to tell you that. It is thought the main problem is with the highly commercialised modern wheat varieties so they, as old-fashioned original types don't have SOMETHING that causes gut problems of some sort. I also spent a week in France last year when I ate a lot of bread and baked stuff (I couldn't resist the pain au raisin and if I hadn't eaten bread I'd have been very hungry ) and I was fine. I think they use a different type of flour and often another technique to make the dough (more like sourdough) so it is possible that is why.

One of the main problems with excluding so many things is that you can't really tell what is helping most but I know what you mean about wheat and gut symptoms! There has been a study that showed that a very strict vegan diet can improve joint pain in about half of patients with rheumatoid arthritis - but as soon as any animal protein was reintroduced the effect was lost. It was such a strict diet it was difficult to follow over a long period. As a Brit I find it difficult to exclude dairy - tea without milk is hard work - but I did restrict the dairy content of my diet last year and I have been better over the last year. I have also lost 28lbs so far despite still being on pred. Finding gluten-free here in Italy is relatively easy because one of the largest companies making gluten-free is based here in the mountains about 60 miles from where I live. There is a very high rate in the mountains - probably because commercial wheat arrived here very late, the same as in Ireland which also has a high coeliac incidence. Italian cookery has a fantastic selection of naturally wheat-free cake recipes

[Whittlesey in reply to PMRpro]

Hi PMRpro, Thanks for the information on spelt and kamut. I agree and have heard the highly commercialized wheat varieties create problems. One theory I have heard is that the processed "skin" or "kernel" (can not think of the exact word) can be indigestible, create a barrier in the intestine for the protein to process correctly and possibly lead to celiac disease to those either prone to it or who have a genetic predisposition. The article seems to say that we all have a predisposition, just some don't "get there".

It would seem quite possible in France that the sourdough bread and maybe unprocessed wheat don't present this problem. There are some French prepared breads that I have had in NYC, that seem ok. Very glad to hear about the Italian varities. This neurologists speaks a lot of getting pasta and wheat from Italy. He said "don't get the pasta and bread they are going to send and sell in the U.S., get the products they intend to sell in Italy. " I have bought some made in Italy and they seem ok.

Glad to know that Italian cookery has a good selection. Very helpful. Thank you.

all my best, Whittlesey

[Whittlesey in reply to Whittlesey]

One quick question PMRPro, if you don't mind. Did you feel more disease free in Italy ? less medications, etc. ? Part of my heritage is Italian and I would love to travel there, and if the food, climate, etc., seemed positive towards overcoming GCA and PMR, I would be interested in knowing. Thanks. all my best, Whittlesey

[PMRpro Ambassador in reply to Whittlesey]

I live permanently in Italy, right up in the north, in the German speaking region of South Tirol. You get less medications here - you get pred and nothing else unless it is shown to be required. No AA, no offers of methotrexate or the like because they have read the papers and realise there is no proof it works, no omeprazole which has its own problems re osteoprosis.

As for food - you must know every village differs about food recipes here! And ours is a mountain climate - Italy can probably show as many different climates as the USA. At present the humidity here is about 15% - you can tell it from the hoar frost in the early morning, no moisture left in the air after a frost of -10C (15F) overnight! In summer it is drier than other places unless it is raining but that doesn't happen too much up here and the temperature can get to 35C (mid-90s F) in the afternoons but overnight it is maybe 15C (60F) . We sleep well - but further south it is a different matter.

[Whittlesey in reply to PMRpro]

My father's father was from northern Italy. His mother was from Bologna. Amazing that they don't give omeprazeole, because prednisone can be harsh on the stomach. Wasn't aware of how their medical community is. A little unfortunate, it would seem. The methetextrate does seem to mediate some of the symptoms of GCA, for me personally, so I can take much lower doses of the prednisone. Have heard that the food recipes differ. My father's family served a lot of pasta, but the sauces weren't heavy on the tomato sauce. One the dinners, also, sauces were used, but not much tomato, in them, at all. Thanks for sending the information. Hope everyone feels better and survivies these diseases. Thank you. all my best, Whittlesey, NYC

[Runrig01]

I seen a nutritionist who advised me to cut down on Gluten as in highly inflammatory. In the last 4 days I've lost 3lbs, that's a first since starting Pred 10 months ago. I am not convinced that wheat plays a part in auto- immune disease developing, I like pmr pro have always cooked everything from scratch, avoided processed foods and ate little bread and I still succumb to this illness. I have not noticed any difference in pain since cutting out Gluten, but will persevere for now as it seems to be helping my weight. Cheers Runrig

[Whittlesey in reply to Runrig01]

Hi runrig01, I'm glad you lost 3 pounds. I also am now cooking from scratch.

This article was not particularly written for those suffering with PMR and GCA, but I thought we could take some use from it. Many doctors I have spoken with, have said that keeping wheat, gluten, sugar and milk out of the diet may well help with inflammation. It is being tried, apparently for many things. The diet is really news to me, because I thought bread (in moderation) was important to the diet. They now seem to be saying that this is mistaken. I don't mind trying the other forms: quinoa, spelt and the others. Ending this, the GCA and the inflammation seems a difficult goal. Prednisone has so many negative results, I would rather work with this diet and supplements and herbals than not have the use of my adrenal glands. That's my viewpoint on parts of this. Thanks for your information !

all my best, Whittlesey

[BromleyPen]

I have always enjoyed all food and I have never been much of a dieter! However, since May, after 18 months of PMR, I changed completely the way I ate. I eliminated wheat, dairy, Bella Donna vegetables (tomatoes, potatoes, aubergine and peppers), eggs, alcohol and some meats (not all). I eat lots of fish. It seemed at first there was little left to eat (not true as there is a long list)! I really stuck to the allowed foods for the first two months.

I enjoy cooking and, like pmr pro and runrig01, have always cooked from scratch. Since May I have made up lots of recipes, many adapted from old favourites, as I have gone along. We have my 92 year old mother living with us and also my younger son, wife and two grandchildren. With seven in the house for mealtimes my goal has always been to make meals we can all eat that are healthy for everyone. I am building up to putting my recipes in a book.

In the first three months or so I lost over 2 stones. I have now lost another half a stone - I had put on over three stones. I have lost almost all aches and pains, my joints are really good - better than for a long time and I think the best thing is that I have regained my energy more or less to the level I have always had.

I don't know if the diet will work for everyone but I look on it as a list of foods I can eat and the rest I must mainly avoid. I like being naughty so I do now have a glass or two of white wine sometimes; I eat very dark chocolate - 81%; I have curry (can't go for long without a good one!) made with coconut milk but no tomatoes (I have twice recently tried fresh Italian plum tomatoes and had no bad effect but all other tomatoes cause me to have reflux within hours of eating so still researching my tomato thing). I don't feel at all deprived even though many of the foods I cannot now eat were favourites before last May - particularly the Bella Donna veggies.

The first couple of months were challenging when shopping and, like PMRpro says, it does take longer. However, that time has passed and I don't really have to think much now when shopping as I know most of the foods I can or cannot eat.

If Whittlesea or anyone wants a copy of the recipes I have done so far or the list of foods I can or cannot eat they can email me at [e-mail] The original list of foods was compiled by a US chiropractor, Tim Irving, for his patients with arthritis, rheumatism, lupus and other auto immune illnesses. I have transcribed the lists into English names .. eg eggplant/aubergine so can send that too!

Cheers

Penny

[Whittlesey in reply to BromleyPen]

Hi Penny, Thanks for your information ! It sounds like you've done really good work with this diet. It is admirable that you are making these meals for so many and they like them. I think that's really good. I would love a copy of your meals. I think you sent some. I tried the Shephard's Pie with sweet potatoes and it was tremendous ! I shared one with a friend and he didn't even realize it was a "specialty diet pie". He really liked it. I did too. I don't feel deprived, either. I will email you. Thank you. all my best, Whittlesey

[polkadotcom]

Like PMRpro, I find this doesn't always work for everyone. I have been off wheat (and on when I get a rebellious streak) for some time now and apart from the obvious - not suffering so much acid reflux due to my hiatus hernia - it makes very little difference at all to anything else.

Perhaps if I were more interested in cooking (which I hate) I might have taken it further, but because I have the HH as an underlying problem and there are so many of the anti-inflammatory foods that I can't eat anyway there didn't seem to be a much point in pursuing it. Oh, I do eat spelt cereal, but I haven't been able to find a spelt loaf as yet. We are comparatively new to this neck of the woods and I haven't yet explored all the options. I have tried gluten free stuff and dislike it so I am still looking.

[Whittlesey in reply to polkadotcom]

Understand. And I don't think there is a professional 'regimen' which includes this. Many doctors speak of this, though and many believe it will help to stop the inflammation. And in GCA and PMR, it is the inflammation causing the symptoms we experience. The prednisone can stop and deal with the flares, but the times between ? Some feel that this kind of diet can keep the disease from recurring -- in the 'flare' stage -- high inflammation, high c-reactive protein and symptoms, GCA -- potential loss of sight and PMR, the nece pain. This diet may be a piece of the puzzle. Hard to know. However, whatever works for you -- is good. Everyone is different. I don't like a lot of the especially made gluten free breads, cakes, etc., either. thanks. all my best, Whittlesey

[PMRpro Ambassador]

Polkadot - there are breadmakers that have a programme for spelt. It is also actually quite easy to use as long as you only leave it to rise once, it has less gluten so you don't use the same technique as ordinary bread.

Gluten-free is generally not worth the effort! It's disgusting so I just gave up bread in general!

[Whittlesey in reply to PMRpro]

Thanks. will look for the spelt.

[Whittlesey in reply to Whittlesey]

Hi PMRPro, I have also heard that some are giving up bread altogether. Some have had good results with this. can be hard to do. thanks, best, Whittlesey

[rockyandzeus]

Hi Whittlesey,

Glad to hear from you, hope you are doing well.

I had so much tummy trouble after being diagnosed with PMR and taking Rx that I was loathe to leave the house before noon, and sometimes not sure if I could make it to work for 1pm without risking an 'accident'. I was pretty miserable.

A friend recommended the book Wheat Belly, which I read and didn't believe. But in desperation I thought I would try going wheat free. It took about a month to work up to going fully gluten free. It is not easy. I did not lose any weight. I terribly miss breads and cinnamon rolls and ...all those yummy wheat treats. But I do not miss having a sore belly, and tummy cramps.

Living gluten free is not cheap. Often gluten free foods don't even taste good. I have found one bread (Udi's cinnamon raisin) that actually tastes like real bread. I found a pizza place that will make a half decent gluten free pizza. It freezes well for work lunches.

There are so many foods out there that have wheat in it that you must constantly read ingredient labels. One learns to eat simply prepared, basic wholesome foods. I make up my own 'frozen TV dinners" with leftovers for work lunches.

I do not think I am celiac, nor does my GP, but the article you quoted certainly may explain why my symptoms are so much improved when I eat gluten free.

I have also considered trying an anti-inflammation diet. That is even more restrictive than gluten free, but if you are incapacitated by tummy troubles, it is worth a try too. There are some quite good books on anti-inflammation diets. Thank you for the scientific references to explain why both celiac and non celiacs could have trouble with a wheat based diet. It's food for thought, eh?

All the best to you

Dorothy

[Whittlesey in reply to rockyandzeus]

HI Rockyandzeus,

Understand and have similar experiences. And I ,too, now read ingredients and find wheat in a lot of them. Am returning to the simple foods, also. My neurologists says that when you go into the grocery stores, go around the sides, do not go into the middle. He says in the middle is all the intriguing prepared food, with wheat, malt, soy and additives that we really don't need. Have followed that to some degree. I don't find it restrictive any longer, especially if it is making me well. The foods can be good. I understand what you are saying, but this may be a way for us to deal with this inflammation which is causing these threatening diseases. wishing you much luck. I am in the states, searching the same isles you are, reading labels and saying "Hmm " good luck. I am glad you feel better.

all my best, Whittlesey

[Hidden]

Due to my sons life threatening food allergies I have had to do quite a bit of allergy free baking.

Dove's farm do a good gluten free flour mix ( rice, potato, tapioca and corn ) which makes good cakes especially if you add in some xanthan gum ( adds elasticity to gluten free ). Ground almonds and polenta make lovely cakes too. Commercial gluten free foods are very high in sugar and I agree that they are not very palatable.

I had the blood test for coeliac when I first developed the joint pain, fatigue and anemia, it was negative. Coeliac disease can present with these symptoms without abdominal symptoms, worth keeping in mind as a differential diagnosis.

Happy baking

Keyes

[Whittlesey in reply to Hidden]

I'm glad you found an appropriate diet for your son. the gluten free flour mix sounds good. I like the idea of ground cakes and polenta. This is doable, I believe. Believe we need to move away from the "conditioning" of bread on the market. There are so many good, healthy foods available, we don't have to be committed to a muffin in the morning, sandwich at lunch, bread at dinner, etc. Substituting these natural foods may be much better in the long run. Thank you for your information, which is very positive and healthful. And I am so glad you found a diet for your son. Thanks. all my best, looking forward to happy baking, Whittlesey

[Badgergirl]

Interestingly, to quote from a paper I read on celiac disease: "The term gluten sensitivity describes a spectrum of diseases that have in common an immune response to the ingestion of gluten, but with diverse manifestations... ...There have been cases reported in which the initial diagnosis was systemic lupus erythematosus (SLE) or polymyalgia rheumatica that were later found to be misdiagnosed cases of gluten sensitivity." I wonder if this might explain the relief some people find when going on a wheat-free diet.

[Whittlesey in reply to Badgergirl]

Possibly. Good information . Thanks. best, Whittlesey