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- knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Seeking advice on potential gluten challenge
@JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form... -
- trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Have I got coeliac disease
And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest... -
- trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
Have I got coeliac disease
@Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In... -
- JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Seeking advice on potential gluten challenge
Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covere... -
- knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8
Seeking advice on potential gluten challenge
Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside...
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By knitty kitty · Posted
@JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats. Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows. I have had a blister on my finger where my pen rested as I write. Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time. Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed. Those aren't fortified with vitamins like gluten containing products are. Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia. Anemia can cause false negatives on tTg IgA tests. A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving. We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear. Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened. Those immune cells only replicate when triggered. If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein. The immune system forgets gluten and casein need to be attacked. The Celiac genes turn off. This is remission. Some people in remission report being able to consume gluten again without consequence. However, another triggering event can turn the Celiac genes on again. Celiac genes are turned on by a triggering event (physical or emotional stress). There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes. There is an increased biological need for thiamine when we are physically or emotionally stressed. Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly. This gets relayed to the genes and autoimmune disease genes turn on. Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body. I recommend getting checked for vitamin and mineral deficiencies. More than just Vitamin D and B12. A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences. Best wishes! -
And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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@Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test. In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.
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Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine). So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts!
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By knitty kitty · Posted
Welcome, @JudyLou, Your rash sounds very similar to the one I experienced. Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well. Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too. Symptoms can wax and wane depending on dietary intake. I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less. Niacin deficiency is called Pellagra. Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's). A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra. Darkened skin around the neck exposed to the sun is Casal's necklace. Poor farmers with niacin deficient diets were called "red necks" because of this. Does your rash get worse if you're in the sun? Mine did. Any skin exposed to the sun got blistered and scaly. Arms, legs, neck, head. Do you have dry, ashy skin on your feet? The itchiness was not only from the rash, but neuropathy. My doctors were clueless. They didn't put all my symptoms together into the three D's. But I did. I'd learned about Pellagra at university. But there weren't supposed to be deficiency diseases anymore in the developed world. Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients. I got better. One of Niacinamide functions is to help stop mast cells from releasing histamine. Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine. Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again. Interesting Reading: These case studies have pictures... Pellgra revisited. https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment. Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor. Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet. Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6. People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6. Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
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