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- chrisinpa commented on Scott Adams's article in Osteoporosis, Osteomalacia, Bone Density and Celiac Disease1Optimizing Osteoporosis Screening in Celiac Disease
I'm 77 and since I was diagnosed with Celiac approx. two years ago my doctor recommended a bone scan. It didn't surprise me that the results showed some bone loss. I had gone on a gluten free regimen and hopefully healing has occurred. The doctor prescribed Fosamax and before I got the Fosamax I did a study and found the bad side effects of Fosamax to...- bone
- bone density
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- Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis3Help I’m cross contaminating myself,
@klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough... -
- ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease4What are Celiac Disease Symptoms?
In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).- celiac
- celiac disease
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- klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis3Help I’m cross contaminating myself,
Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!- 1
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By knitty kitty · Posted
@Xravith, How are you doing? Two cookies are not enough. For testing, you need to be eating a minimum of ten grams of gluten for two weeks minimum before testing for Celiac antibodies. Ten grams of gluten is roughly five or six slices of gluten containing bread per day for two weeks minimum. Breads that contain lots of gluten typically have large bubbles formed by gases escaping during baking. Gluten helps form those bubbles of trapped gases, like a balloon. Artisan breads, and thick, chewy pizza crust are good examples. Look at the size of the bubbles in cakes and cookies. Small bubbles, so not lots of gluten in them. You'd have to eat tons of cookies to get ten grams. Antibodies are made in the small intestine. If you eat at least TEN grams of gluten for at least two weeks, then there will be sufficient antibodies to move into the bloodstream, which can be measured in antibody tests. If you eat less than ten grams of gluten daily, you will get celiac symptoms, but not enough antibodies will get into the bloodstream to be measured, resulting in false negatives. Anemia, diabetes, and thiamine deficiency can also affect testing, resulting in false negatives. Since you are having such difficulty consuming sufficient quantities of gluten, you should consider getting a genetic test done. You do not have to eat gluten to have a genetic test done. Celiac is inherited. It's in your genes. Genes don't change whether you eat gluten or not. A genetic test looks for the most common known Celiac genes. If you do not have the genes, your doctor can look for other health conditions that can be causing symptoms. If you do have Celiac genes, you can assume that those genes are actively causing symptoms. An endoscopy to check for the amount of intestinal damage caused by Celiac Disease is usually done. You should also be checked for nutritional deficiencies. Ask for an Erythrocyte Transketolace Activity test, which checks for Thiamine deficiency. Thiamine, Vitamin B 1, is one of the eight essential B vitamins. Thiamine can become low quickly because our bodies use so much of it everyday. If we're not replenishing Thiamine daily from our diet or because of malabsorption, we can become seriously ill. Same with the other seven B vitamins. Doctors are not familiar with nutritional deficiency symptoms as can occur in Celiac disease. Please get checked for nutritional deficiencies. Ask for the Erythrocyte Transketolace Activity test soon. Please let us know how you are doing. -
@klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.
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By klmgarland · Posted
Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!! -
By Scott Adams · Posted
It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch: -
By Scott Adams · Posted
It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
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