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What's Up With My Symptoms Getting Worse?

gluten Tag

By gluten Tag
in Dermatitis Herpetiformis

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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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  • Recent Activity

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    • trents
      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, celiac disease damages the lining of the small bowel which is the part of the intestinal track where all our nutrition is absorbed. Celiac disease, therefore, often results in nutritional deficiency related health issues. In addition, you describe a diet that sounds largely devoid of fruits and vegetables and dairy (for calcium). This does not bode well for good oral health or good health in general.  It can take two years or more for good healing of the lining of the small bowel after adopting a consistently gluten free diet. In the meantime, adding in good quality supplements can help compensate for poor nutritional absorption efficiency. Common over the counter vitamins and supplements are often optimized for shelf life rather than good assimilation/utilization by the body. We commonly recommend that those struggling with nutritional deficiencies start taking high potency B-complex, 5-10,000 IU of E daily, D3, Zinc and magnesium glycinate. They need to be checked to make sure they are gluten free since wheat starch can be used as a filler in pills and vitamins. Costco Kirkland Signature and Nature Made brands are often good choices. What is causing your swallowing problems? Is it the thrush?
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      The Benfotiamine and thiamax need magnesium to make life sustaining enzymes.  Yes, go ahead and take the Benfotiamine and Thiamax now and include the magnesium as soon as possible.   Yes, take the magnesium at breakfast, too.   I take my Benfotiamine and TTFD Thiamax and B Complex  at the beginning of breakfast.  I take the magnesium after I finish eating breakfast.  Yes, I take NeuroMag.  
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty thank you for replying so quickly! I have not done well at all taking vitamins or supplements, I have such a hard time swallowing even small pills, so I have resorted to crushing them and taking them with Gatorade.  Pretty much I eat baked chicken tenders, Fairlife chocolate protein shakes, gluten free crackers. Thank you so much for the advice, I will try it all for sure, because everything I have tried OTC has done nothing 
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      Hi, thank you for the quick reply! I was diagnosed about 5 years ago I think,  I try to be extremely careful with what I eat so I don't get cross contamination. I used to get little sores in my mouth when I was little, usually from sucking on hard candy, but L-lisene would clear it right up. I got that Nasal Navage thing and used it twice and that's when I thought I had a sinus infection. So I got a z pack. Then I noticed my tongue was coated and it was white except right down the middle which was more brown and crusty, like the corners of my mouth. I also have dry mouth and I went way too long before I started treating it. So then I had some kind of huge pill and Nystatin mouthwash. My mother in law's new husband ( they live upstairs) started complaining of exactly the same symptoms as me. He went to urgent care, they said it wasn't thrush, it was shingles. We both went to our dentist's for cleanings, I don't have insurance so I really couldn't tell they cleaned my teeth at all. But she said my mouth looked good, all cleared up. I had a day and a half of no pain and then it came right back. So I got more pills and miracle mouthwash. There are times it feels like dry socket and times it feels like it's bleeding but it's not. I don't see any gum or facial swelling, I did see a couple of tiny ulcers on my bottom lip, roof of my mouth is still sore, and my tongue and cheeks are still a little coated. I am just at a loss. My mother in law's husband, they  took swabs and called back a week later and said it was a new herpes variant virus that is going around but not contagious. He was cured after a week! And I'm going on 3 months 😭
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      The thiamax and benfo I ordered should come tomorrow. I will start Friday ny b complex the benfo and thiamax for breakfast. I haven't ordered magnesium yet. I wanted to start with this first then add magnesium. Should it be fine to take b complex the thia/benfo and eventually magnesium at breakfast together? Thanks
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