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Everything posted by GFinDC

  1. Hi TDZ, My understanding is the same, a full gluten challenge is needed for the DH diagnosis. The method the use for DH is to take a skin biopsy from next to a lesion, not on it. They check the biopsy for IgA antibodies. I don't know of any way to shortcut the process and avoid eating gluten to get tested. There may be a test some day that doesn't require it, but for now I don't think there are any out there. One thing he might not have tried is avoiding iodine. Some of the members with DH find iodine makes the rashes worse / longer lasting. He'd need to look up iodine containing foods and avoid them. I suggest talking to the doctor and asking for a dapsone RX. He may as well try it since it might help Dapsone is a temporary treatment though and not a long term solution. Welcome to the forum!
  2. Hi, Celery is one of the top allergens, so it could be a reaction to celery. https://www.livestrong.com/article/207641-celery-allergy-symptoms/ By the way, I merged your two similar threads. The forum rules don't allow duplicate threads, They make things confusing. But no problem, carry on!
  3. Hi, There are some people who are IgA deficient, meaning they don't make much IgA antibodies. They test for that by doing a serum or total IgA count. You could ask if they did that test. If you are IgA deficient the yes, the IgG test is the better way to go.
  4. I never tried it myself. But celiac is not cureable so not sure what the point is? Celiac symptoms are widely varied and there are treatments for some of them.
  5. Hi Johna, Great, now that we have talked you out of eating all that food you can send it to me! Just kidding! Johna, rinsing the nuts and drying them should really help if they are contaminated. But it would be better to check with the nut company and see what they say about gluten contamination. Then buy nuts that are safe. How about eating beef, pork, chicken, fish, eggs, sweet potatoes (yams), beans, peas, cauliflour, cabbage, grapes, chickpeas, amaranth, quinoa, broccoli, etc, etc, etc. All these and more are naturally gluten-free foods. Here in the USA there is a chain called Aldi's that sells gluten-free wraps/tortillas. I don't know if they have the same wraps in the UK stores. But they do carry a number of gluten-free foods there. https://www.aldi.co.uk/special-diets/gluten?text=gluten free Here is a thread on microwave buns you can make.
  6. Hi Johna, There is a thread on iron running right now that might interest you. Yes, there can be gluten contamination in nuts. Planters nuts are a pretty safe choice though. They list any gluten ingredients on the package. They could be gluten in frozen fruit I suppose. I don't think its real common though. There wouldn't generally be any gluten needed in a fruit packaging operation IMHO. But is good to check the packagers website for specifics. Many food packagers have information on their gluten content available now. To be honest, your GI system may be upset because of the healing process. It may take several months for things to improve. Simple foods with little spice are a good way to go. All home prepared food and no restaurants for 6 months is good. There is also the possibility you are reacting to one or more of the foods in your revised diet. Maybe eliminate one of them and see what happens? It may be something you are consuming on a regular basis is not agreeing with your digestion. Coconut? strawberries? other? A good thing to consider is the common food allergens. Link below. https://allergytraining.food.gov.uk/english/rules-and-legislation/
  7. This article on Healthline is where I read about calcium interfering with iron absorption. It also says citric acid helps promote iron absorption. So eating a cheeseburger doesn't help your iron level nearly as much as eating a hamburger with a squirt of lemon juice. https://www.healthline.com/nutrition/iron-deficiency-signs-symptoms#section11 It can take months to recover iron levels even with supplementation. We just don't absorb it well. Plus with celiac damage to the small intestine we don't absorb foods well regardless. People can have GI symptoms from taking large doses of iron supplements. So it is probably better to take more moderate amounts daily than a larger dose once a week. The same goes for vitamin D. Vitamin D is better absorbed in a moderate daily dose than in a large weekly dose. This link lists some iron rich foods. I don't agree with eating tofu though as soy is a risky food and not great for intestinal health. So take that one out of their list IMHO. https://www.healthline.com/nutrition/11-healthy-iron-rich-foods You can take psyllium husk capsules for extra fiber. Psyllium husks are available at lots of health stores/pharmacies. Here's one source, there are many others. https://www.swansonvitamins.com/swanson-premium-psyllium-husks-610-mg-300-caps?otherSize=SW802 Many gluten-free processed foods are not fortified with extra vitamins and preservatives like their gluten counterparts are. So you are not getting your vitamin pill in a slice of bread or bowl of cereal now. Instead of vitamins many gluten-free processed foods are loaded with extra carbs and sugar. So not a great trade really except that the gluten is gone.
  8. Hi Johna, I think its pretty usual to have GI symptoms after first starting the gluten-free diet. One of the possible issues is bacterial overgrowth. When your intestines begin to heal, the surface area of the villi increases and that provides more real estate for bacteria to colonize. So things may get out of whack from that change. It can take time for the bacterial balance to re-normalize. One thing that may help is avoiding all sugar and carby foods for a few months. Bacteria thrive on those sugars and carbs and an overgrowth can cause symptoms. There is also the possibility of dairy reactions due to villi damage. Another tricky thing is oats. Oats are often cross-contaminated. Also some of us have an immune reaction to oats like we do to wheat, rye and barley. So removing dairy, oats, sugar and carby foods may help.
  9. IMHO the reactions may be less severe after a minor glutening once we are healed and or immune systems have settled down. How long that takes to happen is an unknown factor though. A year or two may do it though.
  10. I am pretty sure that calcium interferes with iron absorption. So it might help to limit calcium (dairy, nuts, etc) around times of consuming iron rich foods (eggs, spinach etc.).
  11. Hi Brian, She can try some Pepto Bismol. It may help with gut irritation. Also peppermint tea is good for gas. Pepto also has aspirin in it so that can help with pain. Staying off dairy for a few months is a good idea and also oats. Some people with celiac react to oats just like they do to wheat, rye and barley. Eating simple whole foods is best for starting the gluten-free diet. Try and avoid the processed foods.
  12. Hi Trillium, You can post about NCGS here if you want. Although this is a celiac forum, we know that there are many more people with NCGS than celiac disease. And some people with celiac disease are not biopsy proven or otherwise doctor confirmed celiac, so they get labeled NCGS instead. For the most part, both groups needs to follow a gluten-free diet. Although there is some thinking that people with NCGS may actually have a problem with FODMAPS instead. That research is new and we don't know how the numbers will break down. So, it's fine to talk about NCGS here.
  13. Hi Wade, That's great that your numbers are going down! About dairy issues; lactose is a form of sugar that is present in cow milk. Casein is one of the proteins in cow milk. You can form an allergic reaction to a protein but not a sugar. I am not sure why the doc said casein is the problem. More often newly gluten-free celiacs have trouble digesting lactose. That's because the villi lining the small intestine produce an enzyme called lactase that digests lactose sugar. Often the trouble digesting lactose goes away once the intestinal villi are healed. If there is a problem with casein though, it is usually not something that goes away. I have trouble with diary still so I quit eating it years ago. If you can eat hard cheese without problems then it is unlikely you have an casein reaction. Most of the lactose is digested by bacteria when making hard cheeses. So that's actually a pretty easy test. If milk bothers you but hard cheese doesn't, then you are most likely reacting to lactose, not casein. Because there isn't much lactose in hard cheeses. I think quite a few of the long-time female forum members are over 50 too. I'd give you a list of them but I don't want to get banned/flamed. I shouldn't talk anyway though since I am over 60 myself. It seems to me the first 6 months of the gluten-free diet are probably the hardest for many. Then again the first 6 years are no picnic either. (Kidding!) Some people seem to feel much better in 6 months although 18 months to 2 years may be a good time frame for many to have healed their guts significantly. It can take some time for the immune system to calm down after going gluten-free. You are very welcome as far help goes. We like to help people who are going through the same things we did at one point. I boo-booed on my reply above. That should have said "You should NOT have to throw out your food though (if it's gluten-free) or towels etc."
  14. Hi ramie, That's correct, you need to avoid gluten and gluten cross contamination. The reason tiny amounts of gluten matter is our immune systems are geared towards fighting germs and such microscopic things. So the immune system detects and reacts to very small amounts of gluten. And once it starts reacting it can keep attacking for weeks to months. Great for killing off germs and their offspring, but a bummer for us when it's fighting our intestinal lining.
  15. Hi Jen, You are right, most gluten-free baked goods are loaded with extra sugar and carbs compared to gluteny foods. They are really something all of us should limit in our gluten-free diets. Something that might work better for you is almond flour. Almond flour is low carb and may be less of a problem for your blood sugar. A paleo type diet would be a good option I think. I don't know if you have an Aldi's grocery near you but they make gluten-free wraps. They may be a better choice than gluten-free breads. I am not sure of that though, it's just my thinking. One good way to do the gluten-free diet is to stay away from processed foods of all kinds for 6 months or so. That way you avoid a lot of carbs and preservatives and what not. Plus you save time not having to study ingredient lists so much in the store. You are still pretty early in the healing process IMHO. It can take 18 months or more to heal the gut. In the meantime you will be eating a diet that is generally much healthier than most people around you. The gluten-free diet takes some getting used to but over time it gets to be the norm. I assume you are eating eggs also? Meats, veggies, eggs, nuts and veggies is a pretty good diet IMHO. I had baked squash with low cal sweetner and coconut oil tonight. Plus ham and eggs. And nuts for breakfast. I think once you get used to eating differently you may stop wanting those other foods. Hopefully anyhow.
  16. Some people with DH do lousy on the blood antibody tests. They hoard all their gliaden antibodies in their skin instead of their bloodstream. So they may test negative on blood antibodies but still have plenty of antibodies in the skin. Sometimes they even flunk the endoscopy tests for the same reason.
  17. Hi Wade, I use plain water to rinse foods. I suppose it might be better to use a little Dawn dish soap or some such on fruit like apples that is waxed. But I don't usually do that. It's a good idea to rinse foods off anyway to reduce germs. You never know what kid has wiped his nose on an apple in the produce section! Plus like Ennis said there is the wonderful in store bread bakery trend these days where they can have flour wafting through the air. My local Kroger seems to have a pretty good ventilation system set up so most of the heat from baking is exhausted and probably most of the flour with it. But you never know for sure. People working on making bread may have flour on their uniform sleeves and spread it around. Also the flour section is often messy with leaking flour bags spilling gluten around. So the stuff can be present in different areas in a grocery store. And get spread unintentionally. The person stocking flour may be stocking candy the next hour. I don't think buying organic is a bad thing. But I don't think it helps as far as avoiding gluten. The issue is cross-contamination of gluten on/in supposedly gluten free foods. And that cross-contamination can happen to both organic and non-organic foods. It seemed to me that I was very sensitive to gluten exposure when I first went gluten-free. Even slight amounts would make me sick. You may find the same to be true for you. I think that is because our immune systems are in high gear at first. So even smelling bread baking or going through the bread isle can bother some people. After a while on the gluten-free diet the immune system may calm down and not be so quick to react to minor exposures. That can take some time to happen though, maybe years, Some other foods to watch out for and avoid at first are dairy and oats. Many of us are lactose intolerant for several months after going gluten-free. That may go away though. And some of us are intolerant to oats like we are to wheat, rye, and barley. Oats can also be cross-contaminated in the processing or harvesting.
  18. Hi Wade, You are right, there are lots of little gotchas out there in the gluten-filled world. That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet. The list of ingredients on an apple or an orange or a steak is usually real short. So you can get out of the grocery store quicker by eating whole foods like those. Plain frozen veggies or canned are usually safe too. And fresh produce as long as you give it a quick rinse.
  19. Hi, He may have additional food intolerances that have developed and are causing symptoms. Nightshades and soy are 2 that seem to be associated with joint pain. Also vitamin D deficiency can cause it.
  20. It looks there are some available. https://www.yelp.com/search?find_desc=Gluten+free+Beignets&find_loc=New+Orleans%2C+LA
  21. Hi Sekhmet, Yes, taking the D daily is supposed to more effective for raising the vitamin D level. I have RX for 50K IU of D also. But am now taking 1000 IU daily as well. I guess the 50K IU is not always fully absorbed.
  22. Hi, I had joint paint but it didn't lead to celiac disease directly. My joint pain was originally caused by nightshades and vitamin D deficiency. Since i stopped eating nightshades years ago much of my joint pain went away. However I still get it sometimes and it is probably related to D deficiency. I've been low D for many years. I do have a RX for Vitamin D now though and it is helping. If you are low vitamin D it is supposed to be more effective to take a smaller dose daily than to take a large dose infrequently. So 1000 IU daily is better than 50K IU weekly. In theory. The usual celiac testing process is to get a blood draw for antibody tests first, and then an endoscopy later to check for intestinal damage.
  23. That's good Emily. It's much cheaper than going to the doctor and more effective too if it is a food reaction. I left out oats as a possible food trigger. There is a small percentage of celiac's who react to oats like they do wheat, rye and barley. So for those people oats are a big no-no. I am one of them so oats are a real bad deal for me to eat. And they put oats in a lot of gluten-free labeled foods. I had fainting spells myself when I went gluten-free. Most of the time I would not faint but would get weak and confused. I eliminated soy from my diet and after a few weeks that stopped. Here is an article about the vagus nerve. A GI condition can be implicated in vasovagal reflex, where blood pressure drops suddenly. So GI conditions can cause fainting is the upshot. https://www.verywellhealth.com/the-importance-of-the-vagus-nerve-1746123 Sudden stimulation of a vagus nerve can produce what is called a "vasovagal reflex," which consists of a sudden drop in blood pressure and a slowing of the heart rate. This reflex can be triggered by gastrointestinal illness or in response to pain, fright or sudden stress. Some people are particularly prone to the vasovagal reflex, and their blood pressure and heart rate changes can cause loss of consciousness — a condition called "vasovagal syncope.
  24. Hi Laurel, Has your son been tested for celiac disease? Allergic reactions can be elevated by celiac disease. At least in my case they were. I had bad allergies that decreased a lot after going gluten-free. My theory is the immune system is in overdrive because of celiac disease and so allergy type reactions are kicked up also. And since celiac disease is gene related, it is important to get all first degree blood relatives tested.
  25. Hi Emily, Like CL said, there are lots of possible causes for dizziness. One possibility is food reactions. You can test your body for those by stopping eating foods that might cause the reaction. Some suggestions of foods to try eliminating. soy, dairy, coffee/tea/caffeine, sugary foods, nightshades Eliminating certain foods from your diet is a simple way to test your reactions. It is good to do at least a month long elimination before deciding if there is a problem with the food. Some times symptom improvements take several weeks to happen.
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