knitty kitty
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by knitty kitty
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Welcome to the forum, @Pamp8, I stopped foods high in iodine, like dairy and eggs, kelp and iodized salt. I take Niacinamide also called Nicotinamide or Vitamin B3. I haven't taken the tetracycline with it. It seems to make the blisters disappear quicker. I also use tallow balm, a cream made from beef fat, which has been used for thousands...
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Confused About Results
knitty kitty replied to Ginger38's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
@Ginger38, Have you been checked for nutritional deficiencies, besides iron? Celiac disease causes inflammation which results in nutritional deficiencies. Iron needs Thiamine and the other B vitamins to make new red blood cells. Iodine and thiamine deficiencies affect the thyroid. The thyroid is one organ that uses lots of thiamine.... -
@Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin,...
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@Alibu, It's the thiamine (in the forms TTFD or Benfotiamine) that can get into the brain easily and improve migraines. The magnesium Threonate won't help by itself. Taking the thiamine regularly will keep them away. Sounds to me like your doctor is looking for the Marsh 3C or 4 Stage (total villus damage) to make his diagnosis. Those studies...
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@Alibu, Migraines ran in my family as well. Correcting my Thiamine insufficiency made a dramatic improvement in frequency and duration. If you take Thiamine, B12 and B6 together, they have analgesic (pain relieving) properties. Taking thiamine every day has cut down on their occurrence and severity for me. Take Thiamine in the form Benfotiamine...
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@ehb Great you're going to start the AIP diet! I know it's scary and stressful, but you'll soon start feeling better. It's a challenge, but you can make it. Do ask for a Erythrocyte Transketolace test which tests for Thiamine level. I hope your Vitamin D level is between 70 and 100 nmol/L. In this optimal range, Vitamin D can act like a...
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confirmed via biopsy, quite depressed
knitty kitty replied to wellthatsfun's topic in Coping with Celiac Disease
Welcome to the forum, @wellthatsfun! Count your blessings that you were diagnosed so young. Your boyfriend sounds like a keeper! Some of us old farts went undiagnosed for a long time and we're a bit more life worn, but there's a wealth of wisdom here. Do know that many people go through a period of grief after diagnosis that's normal. ... -
It's on this site. Click in my name. Look for the pull down menu that says "Activities" and chose "blog". Oh, there's the link! You can send personal messages through this site, too, if you like.
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It's part of the malabsorption that occurs with Celiac Disease. Yes, I lost weight, too. We can use up our B vitamins quickly when we're ill. The B vitamins are water soluble and easily lost. Supplementing can help ensure we're getting the essential vitamins and minerals our body needs to function well. Many vitamins can be low in the newly diagnosed...
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@Shining My Light, Yes, celiac is spelled differently in Great Britain. Yes, please do consider us as part of your support circle. I had a serious Vitamin D deficiency, too. I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L. Mine was in the single digits. I had been in declining health for years without answers. I...
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@Alibu, Just wanted to add... Migraines can be caused by thiamine insufficiency. I used to have them, regularly, but haven't since supplementing with thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and Magnesium Threonate. These forms get into the brain easily and really improve migraines. I do still get Ophthalmic migraines...
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@HilaryM, Are you eating a diet high in carbohydrates? You might find a Paleo diet easier on your digestive system. A Paleo diet can promote changes in intestinal flora, effectively starving out SIBO bacteria. Be wary of gluten free processed foods. Many are not enriched or fortified with vitamins and minerals lost in processing like gluten...
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@MelissaClinPsyD, I hope you investigate whether your participants take nutritional supplements. The group of eight B vitamins, Vitamin D and magnesium have a big impact on mental health, especially depression. I know correcting nutritional deficiencies were most important in my physical and mental health recovery! There's more information and...
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Lost
knitty kitty replied to Jmartes71's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
@Jmartes71, Please do get checked for nutritional deficiencies. A good B Complex, Vitamin D, Benfotiamine (a form of Thiamine Vitamin B1 that promotes intestinal healing), Vitamin D and magnesium are a good way to start. Correcting nutritional deficiencies with Thiamine supplements (like Benfotiamine), B Complex, and Vitamin D were my miracles... -
@Alibu, I think you should send the National Institute of Health peer reviewed studies I linked to your doctors. Some doctors don't keep abreast of the recent updates to Celiac diagnosis. They may still be operating under the old idea of waiting until intestinal damage is at a Marsh score of 3C or 4 (complete villus atrophy) before diagnosis of Celiac...
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Welcome to the forum, @Gary Libby! Have you talked to your doctors and nutritionist about checking for nutritional deficiencies and supplementing with vitamins and minerals while you're healing? Malabsorption caused by the inflammation and damage of celiac disease can deplete our stored vitamins, making us feel poorly the majority of the time...
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@terrymouse, I agree that you may be suffering from nutritional deficiencies already. Get tested for nutritional deficiencies before supplementing, otherwise the vitamins you're taking can mask a deficiency. Symptoms that you have are similar to what I experienced with malabsorption of Celiac Disease. I would lose my appetite; if I did eat,...
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@Alibu, There may not be textbook intestinal damage in the early stage of Celiac Disease!!! Keep in mind that the endoscope used can only reach about a foot past the stomach, while the small intestines are twenty-two feet long! Damage can be patchy or out of reach of the scope. Early celiac disease may not show damage at all. Don't compare...
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@Shining My Light, While you're trying to decide on your next steps on your journey, I suggest you have a DNA test to look for Celiac genes. Your genes don't change, so you do not have to be eating gluten for it. If you have even one Celiac gene, it's more likely to be celiac disease, than NCGS. TTg antibodies do not occur in NCGS. There are...
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Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac. What did your doctor recommend? What about your Vitamin D? It helps regulate the immune system.
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Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two. If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency. So get the tests before supplementing, or allow eight to twelve weeks for the supplements to...
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I understand your exasperation. My doctors were totally clueless. Me? I couldn't believe it was so simple. I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body. It's about giving the body the nutrients it needs to heal. Read my blog for more of my journey... Do...
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It's not rocket science, like @Scott Adams says! My best advice is not to take Thiamine Mononitrate because the body doesn't absorb it well (only 30% is absorbed, less than that can be utilized). Thiamine Mononitrate is used in many multivitamin supplements because it's cheap and shelf stable, meaning it won't break down in storage on a store shelf...
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@ehb, welcome to the forum! Yes, figuring out the gluten free diet and recovery can be really frustrating at the start. There are things that you can change now which are more restrictive for a while, but they promote healing, and, in future, you'll be able to relax those restrictions. I found the Autoimmune Protocol Diet most helpful. It...
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Welcome to the Tribe! Take the Celiac diagnosis and run with it! P.S. Yes, adopting a gluten free diet is a big mental adjustment. Many go through the five stages of grief. Many are relieved to have a definitive diagnosis instead of being a walking medical mystery. The forum here can help with lots of articles and years of experience to get you...
