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Celiac Disease


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#1 Liven

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Posted 07 June 2009 - 09:17 PM

Hi

Stumbled on an article posted that coeliac disease which is gluten intolerance has a dire effect on scleroderma. Anyone can confirm or verify? In the article, in addition to staying free of gluten, the patient tried some things that sounded pretty drastic. How is coeliac disease best treated?

#2 Jeannie McClelland

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Posted 08 June 2009 - 03:46 AM

Hi Liven,

You may have noticed from reading the Forum that many members also have or are suspected to have celiac disease. It is an autoimmune disease too and it is not uncommon for a person to have more than one. Whether it has a "dire" effect on scleroderma would, I think, depend on the individual person. There seems to be clear associations between the two, however.

Have you looked at the articles in our section on Autoimmune Diseases: Celiac Disease and Gluten Sensitivity? On the subject of treatments, there is this article:

Treatment of Celiac Disease at Mayo Clinic. Celiac disease has no cure, but it can be effectively managed by avoiding foods containing gluten (found in wheat, barley and rye). After gluten is eliminated from the diet, the small intestine begins to heal. Mayo Clinic.

I would be very skeptical B) of any claims that drinking strange concoctions (such as cider vinegar mixed with anything else) or taking over-the-counter medications not prescribed by your doctor. These things can cause more harm than good.

I have a cousin with very severe celiac disease and I know from her experience that eliminating all gluten from the diet is not an easy thing to accomplish. She managed it, despite being a professional chef. She did not instantly get better, but over the course of a year or so, all her symptoms gradually faded away. If it were me, I'd rely on a gluten-free diet rather than try anything my doctor did not approve of.

Best wishes and warm (gluten-free!) hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#3 Shelley Ensz

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Posted 08 June 2009 - 04:33 AM

Hi Liven,

I have both diffuse scleroderma and gluten sensitivity (among many other things). But, I have genes that predispose me to a widespread autoimmune reaction to gluten, and not to Celiac disease itself (which my mother had). Celiac disease is when gluten specifically affects the small bowel; but a reaction to gluten can affect pretty near any part of the body. When it affects the skin, it is called Dermatitis Herpetiformis.

For dealing with either gluten sensitivity or Celiac disease, the only thing really necessary is to completely avoid all forms of gluten. Gluten is in wheat, barley, rye and all products that are manufactured with them. From personal experience, I'd say nearly all manufactured foods contain gluten, so it's not like just avoiding bread and you'd be fine. It is in cereals, soups, pastas, pizza, most chips, crackers, canned goods, all normal bakery products, most sauces including soy sauce, etc.

The latest study we have showed that there is an increased incidence of celiac disease in scleroderma patients; but they did not test for gluten sensitivity either (which is far more common than celiac disease). You can ask your doctor for testing for Celiac disease, if you want, especially if you feel you have any risk factors or symptoms of it. You can also study the subject and try a gluten-free diet for awhile and see if you feel better. Many people do only that, and some of them feel so great that they flatly refuse to ever go back on gluten, even for purposes of medical testing to confirm celiac disease. Doctors hugely object to that because it deprives them of "proof".

People with Celiac disease who continue to consume even tiny amounts of gluten (either accidentally or on purpose) have a greatly increased risk of deadly lymphomas (cancer). So, it is not a laughing matter; it is not "hypochondria"; and it is not a "lifestyle choice" for them; it is a very serious medical necessity. I've heard of celiac patients whose loved ones didn't "believe" in celiac disease and would try to test them by putting gluten in their food to prove they didn't have a reaction. You don't need to have a noticeable immediate reaction (such as diarrhea) to have a serious, widespread, hidden, long term reaction to gluten.

So, study all sides of the issue to make an informed, not hasty, decision because it takes enormous fortitude and extensive knowledge to follow a gluten-free diet. See Celiac Disease and Gluten Sensitivity.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Peggy

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Posted 08 June 2009 - 06:03 AM

This is how all of this started for me. Some 15 years ago I was diagnosed with Celiac disease. Well then 2 years ago I developed peripheral neuropathy. The doctors said it was because I wasn't adhering to the celiac diet. So I get in to see the leading doctor at Mayo Clinic. He does the biopsy of my lower intestine and low and behold I don't have Celiac Disease!!!! He said I am gluten sensitive but not full blown Celiac disease. So all of the problems I was having the reason behind them was blown out the window. So I go back to my neurologist who is the leading specialist in peripheral neuropathy and he treats that but isn't satisfied that there isn't more going on. So he has me see a rheumatologist and she walks in the room and immediately does a biopsy of my lower lip and I have Sjogren's. She immediately diagnoses Raynaud's. She then does a biopsy of my ankle and a bunch of blood work and I have Diffuse Systemic Sclero.

So now I have 6 different autoimmune diseases. But what I'm finding out is that I had so many pre-cursor autoimmune before I actually came down with Scleroderma. I have Hashimoto's Hypothyroidism, another autoimmune. I had a partial hysterectomy due to endometriosis, which I now find is another autoimmune.

So where I'm going with this is that you will see that a lot of us have a number of autoimmune diseases going on. I am known at the University that I go to for treatment as an autoimmune disaster. What that is I would love to know.

My celiac problems have lessened compared to what they used to be. Now my daughter is suffering from gluten sensitivity problems which worries me. If I eat bread or lots of wheat then I know to stay near a bathroom. But before this was much much worse. At the time when it was so bad I didn't eat anything until I got home later in the day as I would get so sick and have such bad diarrhea. I am seeing so much more about celiac than I ever did. I think people are finding out they have more and more allergies from not only drugs but food and food products. Now from what I read it says that if a person doesn't adhere to and stay away from gluten that they are at a 40% better chance of getting cancer. That is definitely a deterrent to stay away from it if at all possible.

Warm hugs,

Peggy

#5 Shelley Ensz

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Posted 08 June 2009 - 11:56 AM

Hi Peggy,

Actually, although I may be wrong (and usually am!) I think the statistic is that if a person with Celiac disease (not "just" gluten sensitivity) continues to consume gluten in any amount, they have a 400% increased chance of getting lymphoma (cancer).

And I've found from the school of hard knocks, that even "just" gluten sensitivity is nothing to fool around with for me; no excuses for special occasions, no overlooking a "little bit" of gluten contamination, etc. I'm sure you'll agree that's why it really behooves folks to truly study and understand everything about gluten issues before attempting a gluten-free diet.

It's everywhere, it's everywhere, I tell you -- even in most innocent sounding rice cereals, beer, candies, many ice cream flavors, specialty coffees, processed meats, even butter!, and makes eating in restaurants quite an adventure; sometimes to the point of not being able to consume a single food on the menu, as they frequently fix even the french fries in the same fry pit as flour-drenched items.

I'm sorry you and your daughter are also struggling with gluten sensitivity, on top of everything else.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Susanna

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Posted 09 June 2009 - 09:49 PM

I have been gluten-free for 18 months - it was not a huge hassle because my husband is a true coeliac so we just don't have gluten foods in the house. It has corresponded with a big improvement in my symptoms eg finger swelling and stiffness and has extended the time between my treatments for watermelon stomach (a less common sclero symptom), levels of tiredness etc. I tried going back on gluten at one stage but lasted less than day. It may just be a big coincidence but as far as I am concerned I am not going to go back on gluten full-time to double check because I don;t want to risk having to give up a full-on job again.
Susanna

#7 Susanna

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Posted 09 June 2009 - 10:01 PM

My partner has coeliac disease (as does his mother). He denied it for years and just took constant diarrhea as normal but then ended up with other food intolerances to the yeasts and certain sugars due to the damage to his intestines. These were more like allergies and would make him extremely tired for a day until the food effects passed out of his system. Now after over a year gluten free he is starting to be able to eat foods like fresh fruit again and we can go out for meals once more. Going gluten free is not that difficult once you learn to substitute other foods. There is also an increasing range of branded gluten-free products in supermarkets. The traps lie in some confectionary, malt vinegar, yeast extracts and the like that you would not think had any wheat related products in them.
Susanna.

#8 Susanna

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Posted 27 June 2009 - 07:31 PM

I am now pretty sure that gluten makes my scleroderma symptoms worse. I have just been on holiday and one day had two small slices of bread made with spelt (a more primitive wheat with much lower gluten content but but not fully gluten free). The next morning I had sausage fingers for the first time since going gluten free - my partner commented on them – and the old niggling pain was back! This was unexpected because I was not expecting such a reaction from such a small amount of gluten - or actually any reaction at all. I ate the same foods for the next two days plus ones I normally eat at home but had no further spelt bread. The pain had disappeared within 36 hours but the swelling is taking longer to fully subside.

I was always a little doubtful whether gluten made a difference but had been too scared to experiment because I have been so much more well since going gluten free. This is the second time I have tried a wee bit of gluten and the reaction has been the same. Gluten rather than wheat seems to be the problem because the other time I had a little porridge made with oats. I always thought that maybe the first reaction was just a coincidence but know I am never going to be tempted to risk trying gluten again.

Everyone is different and gluten probably won't affect most people with scleroderma but some people may feel its worth trying going gluten free for a few months in case, like me, you are one of the ones that gluten does have an adverse effect on.

Susanna