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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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Recent Activity
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- HilaryM posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease0New onset constant gas
Hi all, I’ve been following a strict gluten-free diet for 1.5 years since I was diagnosed. The last few weeks though I’ve suffered almost continual bloated stomach and flatulence. It literally is almost constant - and I was never this way before. I can’t think of any change to my diet, activity, etc. I’m dying - it’s so uncomfortable and embarrassing to feel l... -
- knitty kitty replied to Bindi's topic in Super Sensitive People43Refractory or super sensitive?
@Levi, How are you doing? Sorry I missed your posts. How's your thyroid? Did your Vitamin D stabilize? Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D. Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form. Also, Thiamine... -
- lizzie42 posted a topic in Gluten-Free Foods, Products, Shopping & Medications0Gluten free and oat free bars not sugary?
I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any... -
- knitty kitty replied to MagsM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
Inflammation and Menier’s disease link?
Oh, @MagsM, Sorry you had that happen with Niacin. 500mg is the maximum amount of Niacin one should take. Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time. All the B vitamins work together in concert. Niacin in doses at 500 mg or above have been used by doctors to lower... -
- Threecents commented on Scott Adams's article in Additional Concerns1Hidden Gluten: Surprising Foods and Products That May Contain Gluten
Twizzlers were the biggest surprise for me. Wheat is the second ingredient. I found that out the hard way.- celiac disease
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Hi all, I’ve been following a strict gluten-free diet for 1.5 years since I was diagnosed. The last few weeks though I’ve suffered almost continual bloated stomach and flatulence. It literally is almost constant - and I was never this way before. I can’t think of any change to my diet, activity, etc. I’m dying - it’s so uncomfortable and embarrassing to feel like I have zero control over this. Any ideas? Thank you!
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By knitty kitty · Posted
@Levi, How are you doing? Sorry I missed your posts. How's your thyroid? Did your Vitamin D stabilize? Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D. Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form. Also, Thiamine is needed to active Vitamin D. Hypothyroidism can be caused by Thiamine deficiency. The thyroid is an organ that uses lots of thiamine. sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism. We need more Thiamine when we're sick with an infection (like Covid) or injured. We need more Thiamine when we're physically active. We need more Thiamine when we're emotionally stressed or worried. Our brain uses the more Thiamine just thinking than our muscles do while running a marathon. Thiamine is extremely important in fighting infections. Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms. Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing. Damaged villi need thiamine to grow back. Be sure to take a magnesium supplement, too. Thiamine and magnesium make life sustaining enzymes together. You also need magnesium to keep calcium in the bones. The thyroid regulates calcium. A wonky thyroid can lead to reduced bone density. Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease. Namaste -
I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas?
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By knitty kitty · Posted
Oh, @MagsM, Sorry you had that happen with Niacin. 500mg is the maximum amount of Niacin one should take. Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time. All the B vitamins work together in concert. Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol. Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori? An infection by H. Pylori can be tested for by your doctor. H. Pylori can cause low tTg IgA results, too. I would hold off on the microbiome test for now. Your microbiome is going to change when you go gluten free. Your microbiome will change when you start taking Thiamine. Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones. Thiamine in the form Benfothiamine promotes intestinal healing, too. Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome. This is the best diet to heal and recover, IMO. If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results. Same thing will happen if you take B vitamin shots. The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins. There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex. All the B vitamins work together in concert. Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together. Do not buy supplements containing Thiamine Mononitrate because it is not biologically active. It is very hard for the body to utilize. Most of it (70%) passes out unused. Yes, my Meniere's disease has not returned. I was deficient in Vitamin D. I took high doses of Vitamin D 3 to correct the deficiency quickly. I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine. TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily. TTFD helps the Vagus nerve function. The Vagus nerve regulates the ears and balance, and also the digestive system. I like Allithiamine by Ecological Formulas. I also like Thiamax by Objective Nutrients. You should have improvements within a hour with TTFD. TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg). I hope this helps give you some direction to take on your journey! -
Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started? My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond.
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