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- trents replied to BelleDeJour's topic in Dermatitis Herpetiformis26Dermatitis Herpetiformis - follow up dermatology appointment coming up
@BelleDeJour, why did the dermatologist not take a punch biopsy to confirm or eliminate dermatitis herpetiformis? Were you not in an active outbreak stage? -
- Prom363 replied to Ginger38's topic in Coping with Celiac Disease1The Struggle Has Overtaken Me
I know it's really hard to be gluten free. When I first started out, IT WAS SO HARD. I eventually had to start telling myself that I was "allergic". Even though I'm not, gluten affects my body negatively. If you're allergic, you stay completely away. I always have my "safe" foods. Options that I always know where I can eat or what I can make that are... -
- Scott Adams commented on Scott Adams's article in Diagnosis, Testing & Treatment3New Study Links Gut Bacteria and Fiber to Faster Healing in Celiac Disease (+Video)
I agree and just updated this--Inulin worked best!- celiac disease
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- Ginger38 posted a topic in Coping with Celiac Disease1The Struggle Has Overtaken Me
I don't know how to even begin this or what topic to post this under, so feel free to move it if need be, but I just need a place where I can be honest and I need to vent to people who can relate and who can hopefully inspire me to get back on the right track with my life. This whole gluten / celiac/ testing etc has been nothing but an uphill battle and struggle... -
- suek54 replied to BelleDeJour's topic in Dermatitis Herpetiformis26Dermatitis Herpetiformis - follow up dermatology appointment coming up
Hi Belle, well done for advocating brilliantly for yourself. Looks like you have a good dermatologist on board now to help you go forward. Hope your elimination diet continues to keep you itch free. Sue- 1
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@BelleDeJour, why did the dermatologist not take a punch biopsy to confirm or eliminate dermatitis herpetiformis? Were you not in an active outbreak stage?
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I know it's really hard to be gluten free. When I first started out, IT WAS SO HARD. I eventually had to start telling myself that I was "allergic". Even though I'm not, gluten affects my body negatively. If you're allergic, you stay completely away. I always have my "safe" foods. Options that I always know where I can eat or what I can make that are easy and delicious. If I don't plan ahead, that's when I'm super tempted to go off track. Texas roadhouse rolls used to ALWAYS make me chance it and then they would make me so sick. I eventually had to tell myself, you are allergic. That is something you cannot have. It really helped me. I hope this helps! Have you ever tried baking with almond flour? It may take some trial and error but I've had some great muffins and banana bread from almond flour that may help with your blood sugar.
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I don't know how to even begin this or what topic to post this under, so feel free to move it if need be, but I just need a place where I can be honest and I need to vent to people who can relate and who can hopefully inspire me to get back on the right track with my life. This whole gluten / celiac/ testing etc has been nothing but an uphill battle and struggle for me since it began. When I went gluten free years back, it was the hardest thing I ever did, and I did it on my own without much help or guidance aside from this group. I am a foodie and a carb lover and a baker and having to give up so many foods that brought me so much happiness was so incredibly hard for me, but I eventually did it. Even when people encouraged me to have just a little or cheat here and there I didn't give in. I have since developed uncontrolled diabetes which has complicated all this to say the very least, because none of the breads, flours or replacement foods, that actually taste semi good are diabetic friendly (at least not for me). So I have struggled with eating gluten off and on in the form of crackers and breads and low carb keto foods, even though I know I shouldn't. I do good for a while and then I completely lose control again and somehow justify it in my mind. Inevitably because of my struggles, I was really concerned about going back on gluten (full time) for the gluten challenge, I mean it gave me an excuse to party hard, and be miserable while doing so, but I was afraid once I did that challenge for 8-10 weeks that I would never be able to give the gluten back up again. And that is exactly where I am sitting at as we speak. It has been an on again off again roller coaster ride of no gluten, gluten, little gluten, no gluten, lots of gluten etc. I go from buying small loaves of bread and keto tortillas and buns to whole wheat buns and pasta - justifying it somewhat because it is better for my blood sugar issues and that is what is most important. I binge eat some of the foods and then I feel horribly guilty for eating it and then I end up throwing all the gluten food away in a desperate attempt to stop the madness. Then I restart the process all over again at some point. My joints ache. My stomach is constantly sour. I walk around like I have terrible arthritis or something. My hands are swelling terribly, sometimes I can't even make a fist. I am experiencing numbness and tingling in my hands and weird things with numbness and tightness in my face as well. I am dropping things constantly. I am forgetting lots of things and struggle to recall things. I can't focus on my work. I am having nightmares. I am wanting to sleep all the time. I am bloated and sometimes have diarrhea and nausea, but then other times I am horribly constipated. My post herpetic neuralgia issues from shingles are much worse now and overall I am just so irritable and angry and emotionally numb. I know for some it is a simple choice, but I can't be alone in this struggle. Thanks for letting me getting all this out there. I hope someone can scare or encourage some sense into me. It is kind of insane what I do to myself. And I am just tired of dealing with all the food issues and health issues
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Hi Belle, well done for advocating brilliantly for yourself. Looks like you have a good dermatologist on board now to help you go forward. Hope your elimination diet continues to keep you itch free. Sue
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By BelleDeJour · Posted
Hi everyone I have just come out of the Dermatology appointment on a bit of a high! Derm said that she does not see dermatitis herpetiformis often but believes everything I said about thinking that I have it. She said it is either that or a wheat allergy - either way, the answer is the same, no gluten. She said that she spends her working life advising people to trial eliminating wheat and diary etc. but they don't do so (I did say that I am equally as guilty and it really got to the point of desperation with me before I tried eliminating gluten. Plus I knew it was not an eczema flare when the little bumps appeared on my skin. She will do a blood and a FIT test for Coeliac but expects both to be negative. I said that I would refuse to do a 'gluten challenge' if she recommended one and she smiled and said she admired me for that, it is not necessary as my evidence was very clear. She did not think a biopsy would be worth doing but did see the bumps on my feet and said that yes, they do suggest gluten/Coeliac/what allergy. She said that she would like me to be her 'case study' for investigating this so thoroughly myself - and for trying the elimination diet! She does not see dermatitis herpetiformis often. All my bloods that were taken when I was at my lowest point after seeing her were (surprisingly to me) normal. Iron was just a bit low but I have since increased all my vitamin and mineral intake. I did not mention Dapsone because I think I can do this with diet alone now that I appear to have cut out everything that was irritating me (thanks to you guys here). She will give me a repeat prescription of Elocon to use to clear the final areas of sore skin up. I will stay here with you all as we all progress through this.
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