Kamlesh

Gluten free diet

7 posts in this topic

Hello All,

Any experience with benefits of Gluten free diet in managing scleroderma?


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

In some people, there may be a connection between gluten and scleroderma or other autoimmune conditions.  We have a section of our main site on it. 

 

It might reduce some inflammation to avoid all gluten (which is a mighty endeavor in itself) but only if you happen to be sensitive to it. 

 

See Celiac Disease and Gluten Sensitivity at https://www.sclero.org/scleroderma/autoimmune/celiac-disease/a-to-z.html .

 

:hug-group:


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.

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Been trying it for the last 2 weeks and so far no effect.  Guess I am not gluten intolerant then.

 

However many people are intolerant to a degree, some more than others, so certainly worth a try.

 

The only effect was on my bank balance as shop bought gluten free food is a tad expensive and so is flour if you make your own.

 

Just give it a go and see if you feel better as we are all different.

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Hi Kamlesh, 

 

I've never tried a gluten free diet, but again I've no reason to suspect that I might be gluten intolerant.

 

As Shelley and Dimarzio have said, it's unlikely to help if you aren't gluten intolerant, but perhaps it's worth a try to see if it makes any difference for you.

 

I would imagine you'd have to be on it for a while to notice any improvement, if it was working.

 

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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Hi Kamlesh,

 

As Dimarzio pointed out, gluten free can be quite expensive, if you aim to replace processed foods right away.  If you want to try it to see if you notice any changes, you could simply try eating only "real" food for awhile.  It's easier to simply cut out all processed foods than to read a million labels and angst over whether everything has gluten or not. Even frozen strawberries can contain gluten, if they use flour on the assembly line. I mean, who'd think?!

 

So eating any real, unprocessed foods is usually a lot safer and a better trial.  Such as any real fruit, vegetable or protein in its original form (not canned or frozen or processed in any way).  Even spices can contain gluten (is that crazy, or what?), so using the simplest spices and fresh herbs can help.  Gluten can also show up in drinks, making pure water an easy choice during the trial period.

 

If you begin noticing any improvements, then it's time for a medical consultation. You might need to be tested for Celiac disease before going gluten-free any longer. It's important to know whether it is Celiac or "plain" gluten sensitivity, because Celiac disease also confers other risks for continuing gluten consumption of any sort, such as lymphoma.

 

I noticed some health improvements with a gluten free diet. My mother had Celiac disease, so I'm very fortunate I didn't get the full-blown version of it. I went strictly gluten, casein and soy free for over 5 years. Now 2/3 of my diet is gluten free and I'm thinking about whether I want to go all-in again. Or not. Sometimes its a balance of quality-of-life issues versus an expected pay off in symptom reduction. Eliminating any food or food group can pose a challenge for the patient, add stress to caregivers (especially any that do shopping or cooking), and can also pose social issues with restaurants, ordering, etc.

 

As you may know (but casual readers may not), being sensitive is not the same as being either allergic having Celiac (either of which means you must eliminate gluten entirely). And, being gluten sensitive does not necessarily mean that it is the be-all and end-all cure for whatever ails you now. Odds are, that ship has already sailed, quite awhile ago, and blaring the fog horn at this late date probably won't bring the ship all the way back to shore.

 

Some of us may enjoy more impressive results than others. Some of us may choose to overlook the issue as being entirely too much work for possibly too little pay. And then there are fence sitters, like me at present, who still stand to be swayed once more into the straight and narrow, if strong enough research on the subject comes to our attention.

 

:hug-group:


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.

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Thank you Shelley for very insightful reply.

Found an interesting site which suggests benefits of eliminating gluten can reduce inflammation for autoimmune disease patients.  

According to my son (who is pain management doctor living with us), unless one has Celiac disease, there is very little data for benefits of gluten diet, simply try reducing gluten input, as it is almost impossible to eliminate gluten completely.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

I have a daughter who is Coeliac so I know the pitfalls of trying to maintain a Gluten Free dietary regime.   However, she knows exactly what upsets her and does all the food preparation in her family so knows exactly what is in what.   Her husband has to lash out into the forbidden foods when he is not at home but he is getting used to it.   They live on what we in NZ call a Lifestyle Block, several hectares with their own animals so they raise their own meat from birth and know what they have been fed, a luxury not available to most of us.

Prior to my diagnosis in 2002/3 I tried both gluten free and dairy free regimes and that made no difference at all so I have given that idea away since then and just stick to the things which slip down  easily and nourish me as well as I am able to maintain.

I would agree withyour son's opinion that reducing the amount of gluten would probably be helpful but in some cases it would mean having to cut out some foods which are nutritious for other reasons.   A conundrum in my mind.

 

Best wishes

Judyt

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