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What's Up With My Symptoms Getting Worse?

gluten Tag

By gluten Tag
in Dermatitis Herpetiformis

Recommended Posts

gluten Tag Rookie
gluten Tag
Posted

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
ravenwoodglass
Posted

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

dilettantesteph Collaborator
dilettantesteph
Posted

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
gluten Tag
Posted
  • Author

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

dilettantesteph Collaborator
dilettantesteph
Posted

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
ravenwoodglass
Posted

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
ang1e0251
Posted

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
Emily888
Posted

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

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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Finding gluten free ingredients

      By trents · Posted

      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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