Jump to content
Sclero Forums

Hi there, Diagnosed with Limited Scleroderma.

Recommended Posts

I was just diagnosed with limited scleroderma ( CREST syndrome) 3 weeks ago.


Learning as much as possible - I have no skin issues - I do have bloating , digestion issues I have had for the last 10 years? Is this linked to it? I'm still in disbelief!


This might be a crazy question - but I take a lot of collagen daily for awhile. Could the amount in system have thrown my blood tests off? So it looks like I may have this?   

Share this post

Link to post
Share on other sites

Hi Brenda,


Welcome to these forums!


I'm sorry to hear that you've recently been diagnosed with limited scleroderma and I can understand how worried and apprehensive you're feeling. Please note that I have no medical training and therefore could have completely the wrong end of the stick, but I would think that it's fairly unlikely that the taking of collagen supplements would have affected your blood tests.


Having said that, we do have medical pages on Causes of Scleroderma: Drugs and Medications and Collagen Injections, Face Lifts, and Scleroderma, which you may find helpful and interesting. Collagen injections should be used with caution in people who have had certain connective tissue diseases including scleroderma and I would imagine that the same precautions would apply to taking collagen supplements. However, the best person to advise you about any sort of supplement or the results of your blood tests is a listed scleroderma expert. We do recommend that if possible, our members do consult one, as such a complex disease as scleroderma does require specialist knowledge and expertise, in order to be dealt with correctly.


I've also included a link to our medical page on Gastrointestinal Involvement, to give you a little more light reading.


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

Hi Brenda, I am sorry that you have been diagnosed with Limited Scleroderma.


Yes, your digestive problems could be caused by the disease, but there could be other causes too, e.g side affects of many commonly prescribed drugs or simply that our digestive systems can find it more difficult to tolerate certain foods as we get older.


As far as collogen is concerned, I would be inclined to leave it well alone if possible since the disease causes an over production of the stuff in itself.


Hope this was helpful.



Share this post

Link to post
Share on other sites

Hi Brenda,


Welcome to Sclero Forums! 


As it happens, many years ago they did a clinical trial of oral bovine collagen as a possible treatment for scleroderma. Back then, there was some excitement, hoping that it was a potential cure for scleroderma, which is what makes it still memorable for me. They found it might actually improve skin in late-stage scleroderma, but that was pretty much about it. See our main site, Scleroderma Clinical Trials: Inconclusive or Difficult to Study: Bovine Collagen for Diffuse Scleroderma.


In any event, it turns out that injecting collagen is quite different from eating it. As Jo pointed out, injecting collagen may cause a severe allergic reaction in people with connective tissue diseases, such a rheumatoid arthritis or scleroderma.  Collagen is a naturally occurring substance in meats.  I love to make bone broths, which can contain a lot of collagen, and I find it very soothing for my stomach.  


Odds are good that you didn't "do" anything at all to "get" scleroderma.  Some of us have had some curious environmental exposures that may have triggered it, but very few people can pinpoint an exact cause, and in those cases, it's usually very long term occupational exposure to a toxin, without sufficient protection. Even then, it's extremely hard to prove the connection. 



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.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...