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- tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease12New Celiac Mama in My 30s
Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that... -
- RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff4Outgrow celiac?
I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g... -
- knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff4Outgrow celiac?
@Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed... -
- knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease12
New Celiac Mama in My 30s
@tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my...- 1
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- trents replied to Riley.'s topic in Introduce Yourself / Share Stuff4Outgrow celiac?
@Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked...- 1
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By tiffanygosci · Posted
Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3 -
I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely. But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption? Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.
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By knitty kitty · Posted
@Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed as early. Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with. To dispel fear, learn more about what you are afraid of. Be proactive. Start or join a Celiac group in your area. Learn about vitamins and nutrition. Has your mother been checked for Celiac? It's inherited. She may be influencing you to eat gluten as a denial of her own symptoms. Don't let friends and family sway you away from the gluten-free diet. You know your path. Stick to it. Be brave. -
By knitty kitty · Posted
@tiffanygosci, Hello. I apologize for your thread being hijacked. I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain. My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening. Unfortunately, I lost that baby. In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it. Celiac Disease affects the absorption of nutrients from our food. There's eight B vitamins that must be replenished every day. Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks. Other B vitamins can be stored for two months or so. But Thiamine can get low enough to produce symptoms in as little as three days. As the thiamine level gets lower, symptoms worsen. Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that". I used to get severe migraines and vomiting after gluten consumption. Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies. With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly. Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms. Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well. The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus. Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD). Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently. Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain). Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways. Thiamine deficiency can damage the optic nerves. I have permanent vision problems. High histamine levels can make your brain feel like it's on fire or swelling inside your cranium. High histamine levels can affect behavior and mood. Histamine is released by Mast Cells as part of the immune system response to gluten. Mast Cells need Thiamine to regulate histamine release. Mast Cells without sufficient thiamine release histamine at the slightest provocation. This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites. Thiamine and the other B vitamins are needed to lower histamine levels. Vitamin D is needed to calm the immune system and to regulate our hormones. Menstrual irregularities can be caused by low Vitamin D. Celiac Disease is a disease if Malabsorption of Nutrients. We must take great care to eat a nutritionally dense diet. Our bodies cannot make vitamins. We must get them from what we eat. Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time. Our bodies will not function properly without essential vitamins and minerals. Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies. Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells. Blood tests reflect how much is circulating in the blood stream, the transportation system. Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used. The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement. Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body. Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized. This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store. It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use. Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better. (Ask for an Erythrocyte Transketolace Activity test for Thiamine level. Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet? This can prevent genetically susceptible children from developing Celiac Disease. P. S. Interesting Reading Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/ -
@Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.
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