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Hi there! I’m new here and very grateful to any information that can be provided on the topic of Dermatitis Herpetiformis. I’m 22 years of age and have been struggling with this rash since the age of 19. We’re pretty sure it was brought on after having Covid (which resulted in shingles on my backside and strep a year or so later ) I struggle with intense itching and burning which often cannot be reached by a scratch. A find myself applying pressure on the skin in the early stages of it developing. Once it surfaces, small fluid filled blisters can be seen, most often on my chest, back, forearms and forehead (but has sometimes been in more places). We have only recently discovered its link to eating gluten, however getting doctors to listen to me has been a real struggle. They refused to test me for coeliac and offered me no follow up information or care plan, leaving me with no choice but to follow a gluten free diet off my own whim. The rash instantly improved in a couple of days, but of course I now struggle to be tested appropriately without having to go back to eating the dreaded stuff. Anytime I reintroduce it I become so unwell with dermatitis herpetiformis and tiredness. I am also struggling with outbreaks in between taking oral steroids to treat a flare up after being glutened (steroids provided by my private dermatologist thank goodness for him!) We’re now in the process of waiting for a skin biopsy, but I’m finding the outbreaks in between difficult to manage. I enjoy going to the gym but also dance competitively. Sweat seems just to irritate like nothing else. dermatitis herpetiformis has got in the way of so many aspects of my life already and I’m struggling now to navigate it affecting me doing the things I enjoy. I’m after some advice from anyone who can relate or has experience of similar issues. I struggle to get this information from health care professionals so would love any advice or support from anyone if possible. Thank you so much for your time
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Hi, I'm looking for some advice. I'm 28 and I was diagnosed with coeliac disease, when I was just 18 months old. Doctors told my mum that I had too many antibiotics in short period of time and now I can't digest gluten. I have been gluten free for a year. After a year of gluten free diet, the doctor repeated the biopsy and told my mum that I was healthy and could go back to normal. So I have been eating gluten for the last 26 years. I do have health problems like tummy aches from time to time (after giving birth two years ago the pains started to be not manageable). I am constantly bloated. At 13 years old I was diagnosed with arthritis in my knees. At 15 years old I had another biopsy to check my intestinal villus. Biopsy looked good. And doctors were still sure that I can eat gluten. Then at 18 years old I was diagnosed with FAI – FEMORAL ACETABULAR IMPINGEMENT. That makes my life hard, as some days I can't walk at all, because I'm so much in pain in my hips. I was living in Poland back then, so GP doesn't have any history of that. I moved to UK when I was 20. I have also skin condition called Keratosis pilaris. Also very dry and flaky skin on my palms, feet, knees, which cracks, bleeds and hurts. My mum and my brother both have hypothyroidism and Hashimoto. My blood results regarding this are all OK. My mum never been tested for coeliac, but she has similar symptoms to me including joint and bones problems, dry and flaky skin, atopic dermatitis, tummy aches and bloating, constipations and that Hashimoto. Recently I found out that coeliac disease can't be cured. And I should be on a diet all my life. How is that possible that doctors told my mum I was cured? If I am still ill, why the biopsy at 15 years old didn't show the disease? Any thoughts about my story? Also I have booked an appointment with GP, so I will be chatting with a doctor about it soon. How do I approach that? Shall I suggest blood tests first? What if the blood results are all good? Thank you for reading and sorry for such a long post.
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I am curious to know whether anyone else struggles with the clarity of labelling for gluten-free products, especially for someone with coeliac disease. I have recently found out that 'free-from' doesn't necessarily mean the product is free from gluten cross-contaminants and therefore, may still be unsafe for someone with the auto-immune disease. I would love to know if anyone else has struggled with this and any other opinions or advice!
- 9 replies
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Symptoms ongoing
nataliet24 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Is it worrying that I still don’t feel any better after being gluten free for nearly 7 months. Still have constant belly pain everyday and brain fog. Worrying I will have refractory coeliac I’m only 22 and had total villous atrophy -
To Forum Members, I recently was doing research in PubMed about low stomach acid and came across intriguing old research that details it's presence in/with a Celiac and DH diagnosis. see this link https://www.ncbi.nlm.nih.gov/pubmed/3992169 Here is the abstract in it's entirety. Scand J Gastroenterol. 1985 Mar;20(2):133-40. Gastric morphology and function in dermatitis herpetiformis and in coeliac disease. Gillberg R, Kastrup W, Mobacken H, Stockbrügger R, Ahren C. Abstract "Gastric acid secretory capacity was evaluated in 116 patients with dermatitis herpetiformis by means of the pentagastrin test. Endoscopic gastric mucosal biopsy specimens were obtained from both the body and the antrum in 90 of them. Forty-eight patients (41%) had a maximal acid output less than 10 mmol/h, and 30 of them (26%) were achlorhydric. The frequency of achlorhydria increased with age, and 27 out of 58 patients (47%) more than 50 years old were achlorhydric. Antrum-sparing chronic atrophic gastritis was present in 92% of the achlorhydric patients, and hypergastrinaemia and serum parietal cell antibodies were found in most of them. The prevalence of chronic gastritis of the body and of the antrum increased with age. There was no correlation between atrophic gastritis or achlorhydria and small-intestinal villous atrophy, the results of the D-xylose test, and blood folate and serum zinc determinations. The transferrin saturation index was lower in patients with achlorhydria. The frequency of achlorhydria was significantly higher in patients with dermatitis herpetiformis than in 69 patients with coeliac disease." The question is what does it mean? I see the high association between no stomach acid and DH as causal. (triggering) at 90+ percent a direct association. But the relatively high association of Low Stomach could only be casual (associated with) but not definitely triggering but possibly causing someone with Low/No stomach acid to be diagnosed as Celiac/NCGS patients instead. This research being 30+ years old it can be easily over looked. I have found treating my Low Stomach acid helped my GI problems. If it is an Esophageal pH Test could confirm your stomach acid levels. https://www.verywell.com/acid-reflux-ph-test-1742254 Is this definitive research in your mind that indeed no stomach acid is triggering this immune reaction. I was not expecting to find previous research that studied this topic. More Recent research on PPIs indicate low stomach caused by the use of PPIs can/could trigger a Celiac diagnosis. see this article about this topic. Does/Is low or even No stomach acid being confused for Celiac disease today? I would love to hear your thoughts? I share this research in the hope that it will rediscovered again and studied again to see if it can replicated in the hopes that treating one's Low/No stomach acid might help others. This does not mean you yourself will have low stomach acid . . but you won't know if you don't test for it. I think with this high association in those who have received a Celiac diagnosis further testing to rule low/no stomach acid is warranted. Share your thoughts, opinion, ideas and feedback. I start this thread to kick start your thinking? And to invite honest inquiry as the role stomach acid plays in GI health. It is (low stomach/no stomach) is known to be linked/occur in chronic gastritis so it seems only logical it would at least be casual in Celiac/NCGS patient. See this link on Chronic Gastritis and the prevalence of Low/No stomach in chronic gastritis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673514/ they estimate quoting "One may estimate that more than half of the world population have this disease in some degree and extent, indicating that even many hundreds of millions of people worldwide may have chronic gastritis in a form or other." What if the 1/3 of the population that might develop NCGS or celiac disease is just another clinical presentation of chronic gastritis? I think it what the research says to me . . triggered by either low or no stomach acid? Your thoughts and comments are encouraged but I found treating my low stomach acid helped my chronic gastritis. 2 Timothy 2:7 Please Consider what this research says and may the Lord lead you on your continued journey. I hope this research jogs your thinking. I know it confirmed mine . . but I am open to being wrong. A man/woman who corrects me is my friend. I hope this newly rediscovered research helps your thinking about how low/no stomach acid could be causing some of your GI problems forum members/friends. We are all trying to find something that works for us and why we participate to share on this forum to help others with the same help knowledge we have gained on our way/journey God being our help. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish), by the comfort wherewith we ourselves are comforted of God.” Posterboy by the grace of God,
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Hi guys, feeling a bit lost. I've recently been told by GP that I've 99% coeliac. I was screened after ongoing anaemia and failure to get ferritin stores up despite months of supplementation and dietary changes. My bloods were at follows: Deaminated gliadin igg 330cu Tissue transglutamise iga 72cu The diagnosis has caught me off guard as I've never had any GI issues and don't tend to eat a high gluten diet. To complicate things further, I'm 7 months pregnant. My questions are: how abnormal are my bloods and are they very suggestive of coeliac as I read biopsy is only way to truly diagnose.... Is it unrealistic to think I can cut out gluten and get my iron stores up within the month, otherwise I'm looking at a transfusion. And if I cut out gluten would you recommend going back on gluten to get 100% diagnoses once I've had my baby? Or if I'm feeling better and iron comes up just continue as is.... Thanks ?
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Hi everyone, I've recently got more details on my first blood test for celiac and my ALT levels were slightly higher than the normal threshold, 25 vs between 8-22. I've just had my second blood test and am waiting on the results but along with all the other usual celiac symptoms I've been having is this a good sign that I do indeed have celiac disease?
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Scand J Gastroenterol 1999 Sep;34(9):909-14 AW Morrow Gastroenterology and Liver Centre, Dept of Histopathology, Royal Prince Alfred Hospital, Sydney, NSW, Australia. SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. (Celiac.com 06/25/2000) BACKGROUND: It is expected that in patients with coeliac disease the small bowel mucosal mucosa will return to normal if they adhere to a gluten-free diet (GFD). However, in many this is not the case. This study aims to determine whether this persistent villous atrophy (VA) could be due to continued ingestion of the trace amounts of gluten in gluten-free foods, as defined by the WHO/FAO Codex Alimentarius. METHODS: Duodenal biopsy specimens from 89 adults with long-standing coeliac disease were examined, and the findings correlated with their form of gluten-free diet. RESULTS: In 51 subjects the duodenal specimen was normal, whereas in 38 there was villous atrophy (partial, 28; subtotal, 8; total, 2). There was no relationship between the presence or absence of VA and ingestion of either a GFD as defined by the Codex Alimentarius (Codex-GFD; 39 patients) or a GFD that contained no detectable gluten (NDG diet: 50 patients). Intraepithelial lymphocyte counts were higher, and lactase levels lower, in subjects with an abnormal biopsy specimen than in those in whom it was normal. However, within each of these biopsy groups there was no difference in these variables between patients on a Codex-GFD and those on an NDG-GFD. IgA antigliadin antibody was detected in 4 of 29 patients on a Codex-GFD and in 3 of 13 on a NDG-GFD (NS). CONCLUSION: The persistent mucosal abnormalities seen in patients with coeliac disease on a GFD are not due to the ingestion of trace amounts of gluten. The consequences of these abnormalities have yet to be determined.
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Source: Scandinavian Journal of Gastroenterology, 18:(2):299-304, 1983 Mar. Authors - Hallert C., Astrom J., Walan A. Signs of mental depression are typical in adults with coeliac disease. The response to treatment was evaluated in 12 consecutive patients by means of the Minnesota Multiphasic Personality Inventory (MMPI), with surgical patients serving as controls. The coeliacs reported no change in depressive symptoms after 1 years gluten withdrawal despite evidence of improvement in the small intestine. When re-tested after 3 years, however, after 6 months of 80mg/day of oral pyridoxine (vitamin B6) therapy, they showed a fall in the score of scale 2 (depression) from 70 to 56 (p less than 0.01), which became normalized like other pretreatment abnormalities in the MMPI. Cholecycstectomy in the control subjects produced no alterations in the MMPI profile. The results indicate a causal relationship between adult coeliac disease and concomitant depressive symptoms which seems to implicate metabolic effects from pyridoxine deficiency influencing central mechanisms regulating mood.
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Scand J Gastroenterol 2000 Sep;35(9):947-9 Lohiniemi S, Maki M, Kaukinen K, Laippala P, Collin P. Dept. of Medicine, Tampere University Hospital, University of Tampere, Finland. SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. (Celiac.com 06/25/2000) BACKGROUND: A wheat starch-based gluten-free diet is widely adopted in the treatment of coeliac disease, even though the products contain trace amounts of gluten. The aim here was to establish whether such a diet sustains abdominal symptoms. METHODS: The Gastrointestinal Symptom Rating Scale (GSRS) was applied to 58 coeliac disease patients on gluten-free diets and 110 non-coeliac controls. An estimate was made of daily dietary fiber and wheat starch-derived gluten. Psychological well-being was evaluated by a structured interview. Twenty-three coeliac patients consented to small bowel biopsy. RESULTS: The mean GSRS score in coeliac disease patients did not differ from that in control subjects. Poorer psychological well-being was associated with abdominal symptoms in coeliac patients, whereas the daily amount of wheat starch had no effect on GSRS score. Overall dietary compliance was good, and villous atrophy was found in only 2 out of 23 patients. The average fiber consumption, 13 g per day, was lower than recommended. CONCLUSIONS: Wheat starch-based gluten-free products are well-tolerated in coeliac disease patients, provided that their diets are otherwise strict.
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Scand J Gastroenterol 1999 Feb;34(2):163-9 PMID: 10192194, UI: 99206412 Authors: Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. (Celiac.com 05/14/2000) SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, celiac disease3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant upregulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
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Scand J Gastroenterol 1999 Feb;34(2):163-9 PMID: 10192194, UI: 99206412 Authors: Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. (Celiac.com 05/14/2000) SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, CD3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant up-regulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
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Dr. Lionel Fry from the U.K. talked about DH. He stated that all patients with DH have some degree of enteropathy, even though less than 1 in 10 patients with DH have GI symptoms. Dr. Fry also said 40 percent of DH relatives have gluten-sensitive enteropathy. He went on to say that the gluten-free diet can take 6 months to two years to get healing of DH, and a relapse of the DH rash may take 2 to 12 weeks to occur after someone eats gluten. Total disappearance of IGA skin deposits may take up to 7 years after a gluten-free diet is started. Dr. Reunala from Finland talked about associated diseases. He quoted others who said 5 to 14 percent of DH patients have thyroid disease and went on to say that DH patients have an increased incidence of lymphoma but a gluten-free diet seems to protect against lymphoma.
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