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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/ -
By Wheatwacked · Posted
This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals. Low or deficient Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D" Possible Role of Vitamin D in Celiac Disease Onset "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)." Prevalence and correlates of vitamin D deficiency in US adults
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