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What's Up With My Symptoms Getting Worse?


gluten Tag

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gluten Tag Rookie

I have been gluten-free for about a month. Mentally Im feeling much better. In addition, no aches and pains and sleeping better. But my DH has become worse and my occasional mouth ulcers are here with a vengence. What the heck? :o


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ravenwoodglass Mentor

Have you checked all your toiletries? Shampoos, lotions, makeup, lip sticks and balms etc can all provide enough gluten for a reaction.

dilettantesteph Collaborator

It seems to be pretty typical to get more sensitive to smaller amounts of gluten after you go off it. You need to check carefully for sources of gluten to eliminate.

gluten Tag Rookie

I feel like I've checked everything very closely. It's feeling very discouraging.

dilettantesteph Collaborator

I think we need more details about what you use to be able to help you. For instance there are a lot of "gluten free" foods that have marked on the label that they are processed in facilities that also process wheat. Most of those make me and my celiac son sick. They get contaminated by incompletely cleaned machinery or just by gluten containing dust in the air. There are medications and vitamins that contain gluten. Have you eliminated oats? Some celiacs react to even gluten free oats. What brand of gluten free flour do you use? Some celiacs react to grain alcohol and some wine.

ravenwoodglass Mentor

In addition to the stuff already mentioned do you use Iodized salt? If you do stop until after you lesions have been gone for a while. The iodine also activates DH lesions and it takes a while for the antibodies to leave the skin.

ang1e0251 Contributor

Don't forget toothpaste. Have you been around any remodeling like drywall or wallpapering? Do you work any crafts or art projects? Sometimes things we don't even think about have gluten. I had the worst reaction I've since going gluten-free this summer after having 2 packets of stevia. Stevia is a sweetener that doesn't have gluten but I stupidly didn't check the packet. It was laced with wheat flour!

Could you be getting CC'd? At home it can happen easily. That was another dumb mistake I made. I guess I've been my own worst enemy. Look out for yourself!


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  • 3 weeks later...
Emily888 Rookie

Are you taking any medication? Medications and OTC drugs can have fillers that have gluten.

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  • Posts

    • Wheatwacked
      Yes.  Proportionately a small piece to a toddler is like a whole slice to an adult.  This is an important clue.  She was doing well, accidentally ate gluten and later the old behavior returned. I remember reading posts here of people reacting to a kiss from someone who had just eaten gluten. Recent research indicates that 40% of first degree relatives of someone with Celiac have undiagnosed Celiac Disease.  Father, mother, siblings.  There is a whole list of symtoms of "silent celiac".  Here is an article of symptoms possibly mistaken for other causes than Celiac Disease.  When I finally stopped gluten at 63 years old, I counted 19 things that improved, including lifelong mouthbreathing.  I never smelled bad things, so I as a kid, I learned to respond to the other kid's response in order to not seem weird. I really recommend you pursue testing for all the family if you can, and the whole family following GFD.  It is difficult at first, but the benefits will be worth it.  
    • Visionaerie
      I get these but where we are, they are called chicken potstickers. I would obviously suggest that it is the ginger in the product that is causing a stimulative digestive effect! So you might want to do what I do, just cook one of them with the rest of your meal so you don't have the same effect. I love the Feel Good products but they are on the expensive side. (I also drink Reed's ginger brew so in general, ginger is a friend of mine..when delivered at the right dose). Hope this helps and have a warm healthy week!
    • ognam
      Has anyone had Steatorrhea (oily/fatty poop) as a temporary glutening symptom or should I be concerned I've introduced chronic gluten somewhere (like in meds)? I haven't gotten Steatorrhea since before I went gluten free. However, I moved in the past few weeks and haven't been as careful - I've eaten at restauraunts with cross contamination but only experienced minor symptoms like headache. The past week, I ate only gluten free food at home except I went to Red Robin and got fries (told them gluten-free; allergy). The next day I had Steatorrhea and the day after that.   I know it's a symptom of malabsorption so I was wondering if it was the kind of thing that could be caused by one event or if it was due to a more chronic issue. Of course I will speak to a GI but I recently moved and need to find one.   Thank you for any info
    • plumbago
      A relative has opened another door for me on this issue -- the possibility of menopause raising HDL. Most studies suggest that menopause decreases HDL-C, however, one study found that often it's increased. "Surprisingly, HDL cholesterol was higher (p < 0.001) in postmenopausal women by 11%. Further, the number of women who had low HDL cholesterol was higher in pre vs. postmenopausal women. The range of ages were 26–49 years for pre-menopausal and 51–74 years for postmenopausal women. "This interesting finding has also been observed by other investigators. It is possible that the observed increase in HDL-C in postmenopausal women could be due to a protective mechanism to counterbalance the deleterious effects of biomarkers associated with menopause. However, further studies are needed to confirm this theory. And to the point raised earlier about functionality: "...some patients with elevated HDL-C concentrations could remain at risk for coronary events if HDL is not functional and some authors have suggested that this could be the case for menopausal women." Postmenopausal Women Have Higher HDL and Decreased Incidence of Low HDL than Premenopausal Women with Metabolic Syndrome. By no means to I think this is definitive, rather food for thought.
    • ognam
      Yes, lots of delicious things have barley malt. It also doesn't include rye. And there are a number of grains commonly cross contaminated such as oats.   Additionally, wheat allergies are different from gluten allergies as wheat allergies are a reaction to a wheat protein. So something *could* contain wheat gluten without causing a wheat allergic response (though realistically,  I don't know how likely that is to occur)
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