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- knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease13New Celiac Mama in My 30s
@tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body. See my blog. Click on my name to go to my page... -
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- tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease13New 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...- 1
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- knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff4
Outgrow 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 Disease13
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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By knitty kitty · Posted
@tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body. See my blog. Click on my name to go to my page, scroll to drop down menu "activities" and select blog. So glad you're motivated to see the dietician! We're always happy to help with questions. Keep us posted on your progress! -
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/
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Thank you for that information!! I have learned so much since coming to this site and I really appreciate ALL the tips from everybody!!
I live in New Orleans, and I spend far too much time wondering about the what ifs and the logistics of getting out of town in non moving traffic.
My best bets have been to pack safe peanut butter and rice crisps, trail mix, some fruit leather, and lots of water. From experience, the cooler is the last thing anyone makes space for when family heirlooms are on the line.
My plan of action is to grab the container of paperwork, including my SS card, birth certificate, high school papers, medical papers (including diagnosis and Celiac guidelines, signed by my doctor), emergency/ evacuation contact sheet (my friends, family, and healthcare providers were all willing to give me contact numbers and e-mail so we do not wind up unable to locate each other like in 2005, and insurance card. I have a medium sized bag that I will fill with basic clothing, one photo album, and a small cooler. My fiance keeps his papers with mine, and has a bag of equal size. Food I need for the trip goes in the cooler, everything else goes out to the dumpster before we leave. I will buy food I need for the stay when I get where I am going (which is dictated by whether or not it has a WF in the vicinity, as that is my job and my food source).
Last time I had a hardcore evacutaion, we learned how very little you actually need, as opposed to what you want.
So- important documents, a week's worth of clothing, one heirloom or sentimental object, and enough food to get you to your destination. If you have a baby, plan ahead by bringing about a week's worth of food and diapers for them, plus enough water to make bottles and rinse them out.
Hope that helps!
~Destiny (is so stressed out)
I would also get some extra tissues, toliet paper, and flashlights too to take along. Some immodium.
Oh, wow... now you mention it. I cannot imagine getting stuck in evecuation traffic, getting a hold of something that disagrees with me, and not having immodium!
That would make evacuation even more nightmareish.
It would not be worthwhile to sacrafice your own health to help us. There are enough others doing the heavy lifting, knowing our area is in your prayers is help enough.
In the event you are ever displaced, try to have emergency numbers for your doctors, a signed note (on their letterhead) explaining your condition and diagnosis for another doctor wherever you wind up, and a month's worth of any Rx medication. If at all possible, I try to have my prescriptions moved to where I am going before I leave. Most of the time, the pharmacist has already left, though. Just as well, they need to move, too!
Hope this helps,
~Destiny
i think another important thing when stocking up on food is to make sure it's stuff you like and use on a regular basis, so you know how to prepare it, you're ok eating it, etc.
a great place to check out as far as food storage goes is www.bluechipgroup.net
they are a local supplier that i love, and on the food storage page, they have a 1-year emergency gluten-free plan! i'm trying to build one of my own for my family...it's so much work!
Got an answer about Ensure:
Hello Destiny,
Thank you for contacting Abbott's Ross Products Division.
Ensure
Last night I was remembering right after Katrina when we began receiving bus loads of evacuees and I, along with many other members of our local Celiac group, began making phone calls to our Celiac group leader and to the Red Cross, the local food bank, etc. to try to make donations of gluten-free food for evacuating Celiacs. All the pictures on TV showed the receiving areas handing out pizzas and burgers.
Any Celiac that might evacuate away from their known areas might want to keep a list of Celiac groups in their evacuation supplies. It would help you plug into the needed resources right away.
A List of Local Celiac Disease Support Groups/Chapters
https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0
And I will say that the Red Cross seemed rather clueless about gluten-free food but the food bank was willing to accept the food and keep it separate from the regular stuff. They put it in their medical area where they keep the diabetic food.