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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

ISN Chat Host

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

ISN Chat Host

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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People just love to give advice, as much as we want or don't want it! First, let me say that people, even doctors, are always telling me to do or don't do something that because I have scleroderma or the kidney transplant doesn't work for me.  :emoticon-dont-know:

 

To your topic, Marsha: All of this has come about due to testing for a lung transplant but I have found out my esophagus is not working, that I have reflux, it is dilated, that after fasting for 12 hours it is still half full, that I have a huge hiatal hernia, and the latest is that I have SIBO (small intestine bacteria overgrowth.)

 

I followed a total elimination diet (no gluten,no dairy, no soy, etc.)  from June until September with no relief of symptoms, actually an increase. I was eating very healthy, whole foods but still having up to 20 bowel movements a day. After 21 days when I introduced a food I really didn't notice a difference. I wrote down everything I ate and my symptoms until I got tired of tracking how many times I had been to the bathroom. I've been eating gluten, but not as many salads and fruits as summer has come to an end and strangely I am doing better.

 

I recently had a Hydrogen Breath Test showing the overgrowth of bacteria in my small intestine. The diet for SIBO is very similar to the elimination diet but eliminates even more things like all the fruits and raw vegetables I was eating from June until Sept. Hmmm. My doctor wants me to take an antibiotic for it but we are on hold right now.

 

I don't know what the answer is. The gold standard for diagnosing celiac disease is biopsy during endoscopy, which I will be having in the next few weeks. The blood work test is not always accurate. All I know is scleroderma has wreaked havoc with my body.

 

I'm tired. Tired of all the testing. Tired of all the doctor appointments. Tired of there always being something new that's wrong. Tired of medications. Tired of getting better and getting worse. I'm also happy. Happy I am still here today to write this, happy that I had a kidney transplant and am no longer on dialysis, happy that I can use my hands again, happy that there is oxygen that helps me breathe, happy that I can still do things I love to do, happy for all of you here who support each other so well.

 

I wish I had the answers. I wish that somebody did. Don't we all? 

 

miocean

 

 


ISN Artist

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Miocean,

 

I totally get your post!! I think we are all tired, and what is worse in my case anyways.. I "LOOK" healthy. so people don't always understand that there is anything wrong with 

me.  People just don't get it. My closest friend the same one who's Mom has been harping on me, has been seeing a gastro and she said she mentioned my issues to him yesterday and he most times sclero patients have SIBO she should be tested for that. Then you have the sclero specialist I saw in Boston who looked at me and said, your scleroderma is going to go away and you will be all better… Then the next one I saw said, No, it doesn't  "go away"; you may get some relief no one knows. Its just really really frustrating for all of us suffering with this awful illness.

 

Warm Hugs and healing vibes,

 

Marsha

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Marsha,

 

I have probably had Scleroderma longer than the majority here, not everybody, I know but a long time.   I reckon it started when I was about 11 and soon I will be 70 :unsure:  Is that good - I am not sure but I am happy to still be here and happy that I can still do most things I want to do.

 

In my experience nothing I have ever tried, and I have tried all sorts of weird and wonderful 'cures', has ever made much difference.    I have got used to the way my body works and I am thankful when everything seems to quieten down and I can jog along relatively evenly.   Then when things change again I have to adjust to the new arrangements, or sometimes add a new medication.   Sometimes add a new diagnosis of another AI disorder.   Sometimes I hate the whole business but all in all I am happy to be here.   New knowledge and understanding is turning up almost every day it seems and I think we are probably doing a lot better than we would have been 50 years ago.

 

You say you look well, so do I (most of the time) and for me that is a blessing.   I would hate to look in the mirror every morning and see a haggard face looking back.   Some people have that to deal with but not you or I.   My close friends can read me like a book and seem to know when I am feeling less well than usual, and because I am having a good run at the moment, they love to tell me that I look 'so much better with some weight on'.   Personally I wonder if it is just envy because they would love to be as skinny as me sometimes.

 

On the bright side too, my Raynaud's suddenly disappeared a year or two ago.   No reason, no announcement just poof and it is gone.   Bliss!!!   Maybe you will be so lucky too one day.

 

So count your blessings and try to ignore well meaning 'advice'.   Be gracious and thankful that you have friends who care enough to want to help.

 

Best wishes

Love

Judyt

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I look great, too! I look better than I have in years. Since I am not the depressive soul I was on dialysis I dress better, and after not wearing makeup for years because I can't see without my glasses and my hands could't hold the brushes I have discovered eye makeup sticks I can get on. Since I have recently lost weight my clothes fit better. I have long, beautiful fingernails, as for some reason my nails have become harder. I can take showers now and wash my hair whenever I want, which I couldn't for years due to a catheter in my chest so it looks great! I look better than a lot of people my age. Little would you know the entire inside of my body is slowly being destroyed. 

 

The thing about the SIBO, if you have it, what do you do? I have heard the round of antibiotics sometimes don't help. My doctor told me it make not make any difference with the diarrhea. So you can add another thing to the list of diagnosis but can it be fixed? I'll let you know what I find out in a couple of weeks.

 

How is Katahdin, Marsha? Does it have snow on top? I love that mountain...

 

miocean


ISN Artist

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Hello All

 

Yes there are many, many bad, bad things about this disease and there isn't a whole lot we can do about it, we have no control about what may/not come next.

 

What we can control, or rather have control over,  is our attitude towards this disease. Sometimes we need help doing this and if we do it's in our own best interest to get it, I certainly have had help in the past and would not hesitate to avail myself of it again in the future should I need it.

 

Keeping up appearances is important to most people with scleroderma because most people with scleroderma are what? Women! We all know that a good appearance can bring with it that phrase about how well we look when we in fact feel awful and probably took so long to attending to our appearance that we began the process the day before!

 

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 Marsha,

While I don't have a diagnosis of scleroderma, I do have Hashimoto's Thyroiditis and I am on a gluten-free diet due to the connections between ingesting gluten and autoimmune attacks on thyroid. I test negative for celiac on biopsy and also blood work but I do find a lot of my bowel problems are gone when I adhere to a gluten-free diet. I highly suspect that many of the autoimmune diseases have roots in our diets - all the chemicals we ingest daily can't be good for us.

 

Take care!

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