Rogol72
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by Rogol72
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If it's suspected Dermatitis Herpetiformis and the itch is that bad, you should be referred to a Dermatologist for a skin biopsy ASAP to either confirm or rule out DH. I have DH and the itch can be terrible. A blood test won't confirm DH, only a skin biopsy will. A positive diagnosis for DH is a positive diagnosis for Coeliac Disease according to the dietitian...
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I think we can all identify with feeling isolated having an autoimmune disease, even more so with multiple autoimmune diseases. You're not alone. I would suggest looking up some podcasts on Spotify for inspiration and motivation. There's a bunch of them there from fellow Coeliacs. Some titles to look out for ... "Eat Gluten Free with Me" ... pretty...
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Great idea to get a compounding pharmacist on the case. Hope they can come up with something for you.
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I hear ya. I can't ever take NSAIDS because of UC. I took Panadol for a day or two for a bad cold that was going around a few months ago. I felt like I ate a few crumbs of bread, checked the ingredients before and after taking them and it only says maize starch. I react to any OTCs that contain maize starch such as antihistamines. https://www.coeliac...
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A bit of a rant coming here folks. People who do not have Coeliac Disease just do not get the seriousness of the condition or the importance of avoiding cross contamination. Maybe if their stomachs felt like they just ate a bag of glass and have to deal with all the unpleasant crap associated with getting glutened, the penny might drop! Had a family...
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Is there any danger of becoming over methylated? Should we cycle on an off Methyl B Vitamins from time to time? I've read that over methylation can cause symptoms such a irritability, anxiousness, crabby.
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Excess iodine from eggs has been reported to flare DH also. Here's a case report ... https://www.sciencedirect.com/science/article/pii/S2352512622004350 @KyleL, Have you noticed any other side effects of taking Dapsone (beyond it's effect on RBCs)? I'm curious since there's so few people on it here.
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Are you eating oats and dairy? If so, cutting them out should help. I found that eating a mostly AIP diet is the only thing that works keeping my DH in check. Coeliacs with DH are a lot more sensitive to trace amounts of gluten. Dapsone is a broad spectrum antibiotic, so taking a probiotic to counter the antibiotic side effects should help. I use Dapsone...
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@Stulos, I agree with @knitty kitty, getting sufficient vitamins and minerals will help with histamine intolerance ... especially Vitamin D and Thiamine. I remember coming across this site when I was researching HI ... https://mastcell360.com/ . Read her Bio, it may be a good fit for you and your particular situation. Here's another good resource...
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That worked a treat, helped along with paracetamol. Almost back to normal. Thanks!
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Folks, I was out socializing at the weekend watching a game on TV. I must have picked up a bug because I feel like garbage, nasally, sore upper throat, aches and pains and chills, coughing. I know I have to ride it out but, does anyone have any suggestions on how to move this this along? I've got UC so I can't take NSAIDS, just paracetamol. Any...
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I don't think there is a Coeliac Society in Lithuania. Here's a list of Coeliac Societies in Europe ... https://www.aoecs.org/about-us/members/ I would suggest contacting AOECS for information ... https://www.aoecs.org/about-us/. Or contact the societies in adjacent countries who may be able to help ... Latvia, Poland, Estonia.
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Sounds like you're on the right path. Keep us posted on how the SIBO treatment works out for you.
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FYI. Here's a case report of SIBO treatment using the functional/integrative approach with herbal antimicrobials and Low Fodmap diet. Though the patient in the report was not Coeliac but had IBS, it was treated successfully. https://www.spandidos-publications.com/10.3892/ijfn.2021.23#
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I found some useful information from Dr DiNezza about SIBO, Probiotics and Low Fodmap diet.
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I believe Coelics are prone to developing histamine intolerance and MCAS. For me it comes down to making sure my body has all the Vitamins and Minerals it needs to heal and the cofactors needed to produce DAO. Dysbiosis plays a role in HI also. My HI has improved vastly since minimizing food and beverages high in histamine ... though this can be difficult...
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I agree with @Wheatwacked , when my Vitamin D levels drop, my celiac disease and DH is more reactive to CC and trace amounts of gluten. Low levels will alter mood and bones begin to ache. It's a critical nutrient for immune system modulation. Some people have genetic polymorphisms of Vitamin D and do not convert D3 to the active form very well. I take 40...
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I hear ya. I've had UC brought on by C. Diff post knee surgery, was on prescription pain meds for months for the unbearable pain. I'm glad it's worked out for you.
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@dixonpete, I'm intrigued that the hookworm therapy actually works for you, though not at all tempted to try it myself. Aside from the antibody tests, have you ever tested your vitamin and mineral status, say Vitamin D, Iron, B12 etc. while consuming gluten with a healthy active hookworm colony? Do you supplement with vitamins and minerals while hosting...
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I have found that my DH will flare more easily when my Vitamin D level drops. I need to keep it in the 150nmol/dl range. I found some great explanations by Dr. Eduardo Beltran on youtube regarding Vitamin D therapy and anti inflammatory diet in treating autoimmune disease. Some very interesting lectures with case studies. Not medical advice but worth educating...
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The emotional stress alone from dealing with such a situation will severely deplete vitamin and mineral status beyond gluten free or AIP diet. I sincerely hope your situation will get better as soon as possible.
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It's a shame the Dermatologist did not follow the correct procedure for DH biopsy. My DH initially appeared to be Eczema, but when steroid cream didn't clear it up, my Dermatologist immediately took a biopsy and DH was confirmed and subsequently celiac disease. Dapsone, which has its drawbacks will clear DH outbreaks up very quickly. With DH, you need to...
- 29 replies
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- allergies
- eosinophilia
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Lots of neurological symptoms
Rogol72 replied to Pdawg's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I can confirm the white spots on the brain, little dots. Apparently also common in migraine sufferers. Had an MRI several years ago for what was thought to be a blood clot in the cerebellum, turned out to be a cyst. Had a repeat MRI a year later, no changes thankfully. The neurologist said the white spots were from my UC, but it is probably from UC and celiac... -
Thanks @knitty kitty, much appreciated! Here's an interesting testimonial on the efficacy of Thiamine in helping to treat SIBO for anyone who's interested ... https://www.youtube.com/watch?v=3oyHbpsMejg . The other aspect of SIBO which I've ignored is the role the MMC plays in clearing out the tiny leftover debris in the small intestine in between meals...
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@knitty kitty, I'm curious as to how long did it take for your SIBO to resolve on the AIP diet? Beyond addressing nutritional deficiencies, did you take any antimicrobials and/or probiotics during that time?
