marsha

Correlation between celiac and Sclero

22 posts in this topic

Hello all another day another question,

 

My friend's Mom has celiac disease and was at a seminar. Whom ever spoke at this seminar suggested that there were studies that show that celiac is the cause of the diseases and many of the symptoms of scleroderma and Sjorgren's. Does anyone know if this is true? She is pleading with me to get tested, and to go on a gluten free diet. I just had a bunch of lab work done and I am going to call the doctor tomorrow and see if it is too late to have celiac test ordered just to rule it out. I guess I am very confused about this. Does anyone have any information on this. 

Thanks so much

Marsha

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Hello Marsha

 

Well celiac disease is an autoimmune disease, when foods containing gluten are eaten it causes damage to the lining of the small intestine, it is a known cause of scleroderma and many other autoimmune diseases such as Sjogren's. I don't mind telling you I had no idea it was such a catalyst!

 

As per our page about celiac disease: Gluten sensitivity and Celiac disease are a known cause of scleroderma and dozens of other autoimmune diseases. Even if tests for gluten sensitivity and Celiac disease are negative or inconclusive, trial of a gluten-free and casein-free (GFCF) should be considered. However, some doctors don't like this approach as it can interfere with the diagnostic process, how I don't know.

 

Even if your test results came back negative it seems worthwhile trialling the diet but do you have symptoms of celiac disease? If you're wondering what they are have a look at the link in my opening line and laugh as you read what they can be according to one source and according to another that there aren't any. Say what? Per the Mayo Clinic: There are no typical signs and symptoms of celiac disease. Most people with the disease have general complaints, such as intermittent diarrhea, abdominal pain and bloating.

 

I know many people on the forums have issues with gluten and hopefully they'll be able to help more.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Funnily enough, I am being tested for this, and am awaiting the results. For some reason I am finding that I am avoiding bread anyway, and some foods that are carbohydrate based, seem to make me run to the loo a lot! I have also read that there are a lot of links between the two conditions.

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Hi Marsha,

 

I'm afraid I can't add to Amanda and Inkedup's advice, as thankfully I don't suffer with  Celiac Disease, or Gluten Sensitivity.

 

I'm sure, however, that we do have other members who will be able to give you some more first hand information and help.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you all,

I was just concerned that this woman keeps pushing to me that I "MUST" be celiac and therefore if I go gluten free all my issues will go away.. The scleroderma and Sjogren's will disappear and I will be a healthy "young" woman again.. I just feel like that is all poppycock.. but maybe I'm wrong.. I am a lot..

Marsha

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Maybe Marsha, and maybe NOT,

 

The one thing you can be sure of is that it won't do you any harm.   There is some talk around, saying that if you go GlutenFree when you don't need to you will miss out on some nutrients.   I can't see that happening if you are careful about your diet.  

 

Our daughter was always a fairly sickly child.   Always tired, asthmatic with rheumatic aches and pains, Eczema and frequent itchy rashes.   Nobody I consulted had any ideas about what to do.   Then when her children were small and I was frequently called on to look after them while she threw up, we decided to try a low starch regime which made a remarkable but not complete difference.   Going completely GlutenFree has changed her life, but just because that has happened for her I would never suggest that it would help you or me more than maybe just a little.

 

There are so many people now who have a gluten intolerance (as opposed to being Celiac) which I would put down to development of more modern strains of wheat, longer shelf life, more pest resistance etc. etc.   Whereas 'Man' meaning you and me are still the same genetic beings that we were 40 to 80 years ago.

 

The good thing about there being more people needing gluten free food is that the selection in the supermarket now is not only much wider but not as expensive.   In our family we are all conscious of what foods are suitable for everybody and I buy many gluten free basics just so that when they come to us I can relax about the food.

 

Listen to your inner 'me' and make your decisions for yourself and not because of a nagging friend.

 

Judyt

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Hello Marsha

 

Don't people realise that if something as simple as cutting out gluten "cured" scleroderma/Sjogren's that we'd ALL be doing it and when you came onto the forum we would have told you to avail yourself of the cure pronto!

 

I have no doubt that if you have this intolerance a change of diet would make you feel so much better and relieve some symptoms but it is not a cure for scleroderma/Sjogren's.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I have coeliac and scleroderma, diagnosed with coeliac at age 5 and scleroderma at age 45. I have minimal symptoms of scleroderma, Raynaud's, calcinosis, and some minor stiffness in my arms. A gluten free diet will not cure scleroderma that's for sure, but if you have digestive issues it might be worth trying a GF diet for while to see how you feel. The important thing is that if you want to be tested for coeliac you must have a diet of gluten otherwise you will not evidence a reaction to gluten in your system when you have the tests.

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Hello Eve

 

Welcome to the forums, this is the first post of yours I've come across so I'll welcome here!

 

I am also in Essex and there's more of us with scleroderma in Essex than any other county in the UK, weird eh? I'm glad you have minimal symptoms and that it stays that way, if you decide that you want to meet others with the disease send me a PM as I host a local group for people with scleroderma.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Eve,

 

It's great to hear from you again and like Amanda this is your first post I've seen, so I'm welcoming you as well! :)

 

Perhaps I shall meet you also as although I don't live in Essex, I do love going to Amanda's meetings (it necessitates a journey around the M25 but is well worth it!! ;) )

 

Please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Amanda, Jo and Eve...

This is what I was thinking.. although I do have some gastro issues I have done a "sort" of elimination diet. and there is no rhyme or reason to my bouts of "Gotta Go's".. I never have pain or discomfort. My gut really tells me that I do not have celiac. I think what I do have is some issues due to my disease, and now with the addition of the Sjogrens and what I am reading about that it all makes sense. This is what she said to me: "Please speak to your Sclero doctor about being tested for celiac and his thoughts about a gluten free diet. Apparently its huge in the way people with Sclero and Sjogren's are affected. They found a connection between the disorders and wheat. Having both is a huge clue that you need to get rid of wheat-- at least, it definitely affects the symptoms. This came up at our meeting on the 19th and that's what the doctor said, the one who spoke to us. Doctor also said to the person at the meeting who asked-- they need to be tested for celiac." This is from someone who has become obsessed with Celiac. I guess I just don't know how to handle her, this is a constant thing with her.. UGHHHH

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Marsha, tell her to shut up, that works! :unsure:  :unsure:  :unsure: Maybe not! I guess there's no harm in being tested but if you want to not because someone else wants you to. What does the test involve?

 

Have a read of our section about diet and scleroderma, it's not always a good thing to go on elimination diets and so forth. Any sort of diet should only be embarked upon with the blessing of your doctor. Remember that if you take medication changing what you eat and when you eat it can effect how your body absorbs it, how quickly and so forth.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi All,

 

As far as I know the test for Celiac involves an examination of the colon, I guess much like a colonoscopy.  

 

In Celiac people there is obvious damage there we have been told.   Our Marie is not in a hurry to have this test done because prior to the examination one has to eat a high wheat diet for some time.   She says just doing that will give her such a bad time of vomiting and diarrhoea that she is not interested.  

 

In her case the only benefit of a positive diagnosis seems to be that she would qualify for a food subsidy which would help the budget if they were struggling.

 

Judyt

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Hello All

 

Per Mayo.com: People who test positive for celiac disease antibodies should have a small intestinal biopsy to confirm the diagnosis...Continue eating a normal diet. If you stop eating gluten before you're tested for celiac disease, you may change the test results...

 

Quite a complicated process and if you're diagnosed the restrictions to your diet are quite severe and I would imagine difficult to implement...until you get used to it of course...and I dare say the symptoms are way worse!

 

All things considered unless you're having difficult symptoms it may not be worth the trouble of getting tested, certainly not something to do just to quiet someone else down.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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