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Discussion Starter · #1 ·
I went to my colon doctor Friday. Having some embarrassing problems. I have this lovely gift:rolleyes: of lupus, sjogren's, fibro, raynauds, and ibs. First he says " you are on alot of meds." Ya think. He told me to take the konsyl(been on for long time), a probiotic, and 3 immodium a day and I had to take a sample(of what you can guess). He wants to rule out celiac disease.

My point being of the whole ramble is that he said it would be fine to try a "gluten free" diet. I have some info. But what I need to know is anyone else doing this "gluten free."

Thanks for any information you can give me.

Stacy
 

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Hi Stacy,

I have suffered horribly with ulcers in my GI tract and they thought maybe it was Chrons or Celiacs yet after blood work and biopsies it proved to be neither.

I have not done gluten free however I feel it is worth a try, can't hurt right. I know that the gluten free diet and items sold in the store can be very expensive.

I have no good advice to give you but wish you luck and keep us posted as to how you make out with the diet.:wink2:
 

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Hi Stacy

Yep - I've been gluten free for almost a year now.

When I was little, I used to get a rash all over my back every time I ate poridge oats - a problem for me since my family is Scottish and to react badly to poridge is almost an act of treason - even worst than eating poridge with sugar rather than salt and a separate bowl of milk - etiquette...etiquette!

Anyway, had bad IBS through my 20's and realise now that it stopped when, due to my desire to be slim - I cut out all bread, cakes and the like.

When I became less vain in my 40's and bread in the UK got better - I started eating it again. The IBS returned. Then I heard that one of my uncles had been diagnosed with Celiacs - and, of course, - this was an indicator of my lupus diagnosis last December. I enquired about tests for celiacs and was advised that they involved biopsies and were not always conclusive. The natural thing was simply to stop eating all gluten to see if it helped. It has and continues to improve. It can take a long time for the gut to recover. I was advised at least a year.

I have no difficulty now resisting gluten containing foods - although it took a while to get to that point and quite a lot of reading of ingredients on food packets. You will be surprised to find out how many prepared products contain gluten (for no good reason sometimes) including some pharmaceuticals (in France they put gluten in paracetamol tablets!)

Many of the "gluten free" products are fairly disgusting - but there are some gluten free breads, biscuits, pastas and breakfast cereals that are actually extremely good. When eating out I stick with meat/fish and two veg type dishes and fresh fruit or icecream for desert.

Hope this helps. Let me know if you have any specific questions.

Merle
 

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Hi Stacey,
The safest way to rule out a gluten problem, would be to go off ALL grain products and stick to the safe carbs of potatoes, rice, and corn. If you improve on this, then you have your proof and can then carefully add back in other ingredients. Hint: do not repeat any food in less than 5 days. This is so your body can flush it out, and then you have a clean slate when you reintroduce it again. A pain to do this? You bet, but you want to let your body settle before it gets hit again.
Hidden sources of grains: modified food starch, hydrolyzed vegetable protein, and there are SO many more, but seek out the info sheets by the gluten intolerance group. Check with your gastroenterologist for the name of a similar group in the UK.

If you are on a gluten free diet, and have problems when you add in "gluten free" foods, then you get to have the fun of investigating if you are intolerant to one of the products in the "safe" food. I found out that I am allergic to tapioca and chocolate as well as gluten intolerant. I've lived on a gluten free diet for over 35 years. It is much easier now than it was when I had to go on it back then. There are a LOT of products available now that were not even heard of back then.

Celiac disease, like other autoimmune diseases, can be common in families with one or more people with the disease. So, since there is a familial history of celiac, you could get the "luck of the draw" and have it as well.
Sally
 

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fergusonstacy;557891 said:
I went to my colon doctor Friday. Having some embarrassing problems. I have this lovely gift:rolleyes: of lupus, sjogren's, fibro, raynauds, and ibs. First he says " you are on alot of meds." Ya think. He told me to take the konsyl(been on for long time), a probiotic, and 3 immodium a day and I had to take a sample(of what you can guess). He wants to rule out celiac disease.

My point being of the whole ramble is that he said it would be fine to try a "gluten free" diet. I have some info. But what I need to know is anyone else doing this "gluten free."

Thanks for any information you can give me.

Stacy
Hi Stacy,

I was told about 10 years ago that I was 'borderline' for coeliacs; my Rheumi at the time told me not to bother trying a gluten-free diet, despite on-going tummy cramps/bloating/diarrhoea.

I then saw a specialist dietician (about 5 years ago) who suggested I gave a 'stone-age' diet a go because of all my allergies (no gluten, no dairy, no raw fruit/veg, no sugar, no potatoes, no eggs, no nuts, no processed foods of any kind, etc); my first discovery to all of this was that I am intolerant to rice (it just went straight through me undigested, lovely!). The specialist suggested Quinoa instead (pronounced "Keen-wa"). It's disgusting (like grit-filled couscous), but I perservered.

A month went by - I was worse. Quite a lot worse. So I stopped and went back to my usual diet - and back to my 'usual' digestive problems.

A couple of years ago, remembering the 'borderline coeliacs' of years earlier, I decided to try just keeping to my usual foods, but choosing gluten-free versions of breads etc. I also switched to goat-milk.

And . . A Miracle!!! All the tummy cramps and diarrhoea stopped, I had more energy, my skin glowed, my headaches improved, etc. Hooray! After YEARS of problems! The only thing it didn't seem to help was joint pains.

It lasted about 2-3 weeks. And then . . the dihydracodiene I take for pain began to give me constipation, ARGHHHH!!!!:wacko:

My GP gave me meds to 'shift the problem'. And oh boy, did they shift it- this was worse than ever before!! She changed the meds - and this time, they didn't work at all. Double ARGGHH!!!!

At this point, I asked to see a pain specialist to discuss a change of painkiller (hopefully one without the side effects of constipation). I won't tell you everything that was said; suffice it to say the specialist was truly HORRIBLE, I came away in floods of tears and on the same painkillers with no hope of the situation changing.:eek:hno:

By now I was ready to give up entirely . . and that's what I did. I started eating gluten again. The cramps and the diarrhoea are back, but at least it means my gut is moving, and quite frankly that's better than the other problem! :shrug:

I'm not sure if any of this helps you - I'm not yet dx with Lupus, altho I have the signs/blood-results to indicate it - but perhaps you might recognize some of the problems involved in changing to a gluten-free diet, particularly with regards to pain-meds causing constipation. Work closely with your Dr to find the balance that works for you, and take your time over it.

Gluten-fee was actually not that hard to do at all; most supermarkets have gluten-free ranges which are great. There are gluten-free flours for baking, too (OK - but eat your baking on the same day, as they seem to go stale very quickly). Most coeliacs can cope with oats but oats DO contain gluten, as do most cereals, so be careful.

Anything else I can help you with, just ask! :wink2:
 

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Discussion Starter · #7 ·
Thanks guys. I am now truly confused. I think(not sure) that I am having problems with the probiotic. I am so swollen and have gained like 6 lbs in 5 days. I am thinking of going off of it and see if i feel better.

Let me know. I am desperate. My regular doc doubled my fluid pill. Help.

Stacy
 

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Discussion Starter · #8 ·
I went to an Amish store today and they had all kinds of gluten free mixes. For bread, hot cereal, cakes, pancakes. And one of the ladies there was a really big help(she has been gluten free for 2 years.). I also bought a loaf of bread that was like real bread. I was so excited. I got to have a cheese sandwich:lol:. Doesn't take much does it.

I think maybe I'll try to take the probiotic at night too. Maybe that will help.

Stacy
 
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