Gluten intolerance / Celiac - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,411 members10,622 posts

Gluten intolerance / Celiac

kbmis003 profile image
7 Replies

I am Gluten Free and have been for many years.  However, I did not know about this problem until later in life.  Has there been any link found to be associated with APS; any research concerning both of these two autoimmune diseases.

Written by
kbmis003 profile image
kbmis003
To view profiles and participate in discussions please or .
7 Replies
molly1969 profile image
molly1969

Thanks very interesting. So no gluten? What about green veg too. We're allowed little amounts. The green stuff is no problem but bread would be devestating for me. So what are we allowed?? There's another item on no list. I'm struggling to put weight on as it is.so many foods on shouldnt eat list I'm struggling.x

GinaD profile image
GinaD in reply tomolly1969

There is gluten free bread.  Either make your own or purchase a loaf which will  probably be found in frozen foods as the rice flour spoils quickly ( and store your bread in the fridge.). Also gluten free pasta, cake mixes, cookies, etc.  I didn't discover I had Celiac until age 50.  Turns out, my physician father suspected Celiac when I became severely anemic at age 4, but my mom decided there was impossible to be allergic to wheat and her husband was just trying to make her life more complicated as revenge for incidents as their marriage unravelled. 

Yes, they divorced.  And I suffered sky high ANA levels plus 7 cases of "mono" in 14 years ( Mom also thought my Dad's diagnosis of lupus was just a ploy for sympathy,) along with persistent anemia.  When  the diagnosis of APS came along I had very high cardiolipin antibodies, high IG As, Ms, and GS, high ANA, and a history of DVTS and migraines and ischemic strokes.  

Then I tried gluten free - a nagging musician friend was convinced gluten was the source of all my ailments -- and all my ailments did indeed go away!  Even  the anemia!  A normal RBC for the first time since age 4 means I march up steep hikes at age 61 without stopping to rest on the rocks and stumps I had treasured at age 20 as places to gasp for breath!  

And all the autoimmune blood work values turned to what a Duke hematologist called " boring" levels -so boring in fact that he wants me off warfarin. ( I remain hesitant.). 

So definately in my experience, gluten intolerance is associated with autoimmunity!  

(  and by the way – the gastrointestinal symptoms of celiac start out mild and become more serious as one ages.    This is why the average age of diagnosis with celiac is in the mid 40s.  Also, the gluten induced inflammation  does not stay confined to the GI tract:   All the organs and systems which must live next-door to an inflamed gut can also become inflamed and symptomatic. So chronic UTIs and reproductive issues go hand-in-hand with celiac. ) 

molly1969 profile image
molly1969 in reply toGinaD

Hi Gina I work in Tesco seen all the gluten free things. Don't look very yummy though. It's all free from this that and the other. Like I say I have a heavy job and every time I go to docs, i lost more weight. Think it's about 6lbs every month. But eat lots. The thought of going on food I don't find appealing will be forced. As in eat to live. No enjoyment? Appreciate your time but when they start making clotted cream scones. Yorkshire puddings and devils chocolate cake won't be eating free from. But you truly are awesome in your wee hikes and energy. I don't think I can do it now and my only moan is I'm skin and bone x

GinaD profile image
GinaD

I don't know which GF brands are found in the UK.  But after trying and comparing for a few years I have found good GF substitutions for nearly every recipe.  Restaurant trips are dicier, but during my previous excursions to your side if he pond I have always been impressed by how easier it is to be GF in the UK.  Keep eating and good luck!  Have you considered juicing? .( without too much kale if you are on Warfarin).  Milk shakes?  Pies made of crusts of crushed store bought GF cookies and butter?  

molly1969 profile image
molly1969

Thanks gina live on starchy foods to put weight on. Gf is good here agreed just doesn't taste the same. Have full fat milk butter yogurts eat 3 meals and snack but weight just drops off. Clothes hanging I really try x

tassie profile image
tassie

molly you are probably not gaining weight because your gut is so damaged from the gluten that it can't absorb food properly. If you give it a chance to heal you may find you start to put on weight again.

You can make just about anything you normally eat with gluten free flour and you will be hard pressed to taste the difference. A lot of store bought GF products are bland but if you make the effort to cook your own you can make some really yummy food :-)

Hedi profile image
Hedi

Hi friends

I have a new serious symptoms..i need to ask if some of you know about it..

My joints of hand fingers are painful and are not soft specially after waking up...I dont know why ..I really did not even use gluten in my diet..so why my body has some symptoms yet..i should mention that i went to a trip and i brought there all my gluten free foods..but there my stomach suffers by serious reflux and yet it is..I used some gluten free pills ..to reduce reflux..but no changes..

Thank you if you help

Not what you're looking for?

You may also like...

Celiac disease?

Does anyone on here have this as well as aps or sle? I’ve tested positive and having the biopsy...
lynzy profile image

Heat intolerance?

Does anyone suffer from heat intolerance with hughes syndrome? I haven't actually been diagnosed...
babyblooeyes profile image

Gluten free progress

Hi I thought I would report back on my experience of going gluten free. Thank you to all who...
Annslack profile image

Gluten free

I have just posted about autonomic dysfunction , but also want to know if many of you follow a...
Zamalek profile image

Going gluten free.

Hi all. Whilst I'm in a period of wellness I have decided to get on the healthy bandwagon. I have...
Tinythepanda profile image

Moderation team

See all
lupus-support1 profile image
lupus-support1Administrator
KellyInTexas profile image
KellyInTexasAdministrator
HollyHeski profile image
HollyHeskiAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.