knitty kitty
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Posts posted by knitty kitty
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@Richard1973, welcome to the forum!
@cristiana is on the right track, stay hydrated.
Also have your potassium level checked. Low potassium causes dry skin and dehydration.
We need Thiamine B1 to keep our potassium level correct. Without sufficient thiamine, we lose potassium and our skin loses moisture.
Ask your doctor about supplementing with vitamins and minerals. The Gluten free diet can be lacking in the eight essential B vitamins, Omega Threes and minerals.
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I'd like to hear more about the supplements recommended!
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Good for your doctor to be wondering about it! She's on the right track.
Anemia, diabetes and thiamine deficiency can cause seronegative results.
Unfortunately, if you go gluten free, your intestines will start healing and damage due to Celiac might not be apparent. But, on the other hand, PPI's cause intestinal damage, too, so they might attribute the intestinal damage to the PPI's and miss Celiac Disease.
PPI's are bad news. I do hope you can get off them.
A genetic test for Celiac does not require eating gluten.
Until a new way to diagnose Celiac without having to consume gluten is invented, we're between a rock and a hard place.
Sending encouragement!
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Acid reflux is not an overproduction of stomach acid, it's underproduction of stomach acid.
We need Niacin B 3 and Thiamine B1 to make and secrete stomach acid and digestive enzymes.
Deficiencies in several of the eight B vitamins can present with gastrointestinal symptoms. Thiamine deficiency can cause Gastrointestinal Beriberi. Niacin and Cobalamine deficiencies can cause digestive upsets.
Ask your doctor about supplementing with the eight essential B vitamins and magnesium.
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Yes, I understand.
I get outbreaks on my legs if I wear leggings. I switched to flannel, nice and soft.
Do ask your doctor about supplementing with B vitamins. Niacin B3 helps the dermatitis herpetiformis spots heal.
Have you asked about a genetic test? You have to have specific genes for Celiac Disease to develop.
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Omega Threes, Vitamins A, D, E, Biotin B7, and Pantothenic Acid B5 are helpful in healing tendons.
I'm so glad to hear of your improvement with high dose Thiamine.
Are you taking a B Complex and magnesium as well?
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dermatitis herpetiformis that resembles folliculitis is a thing. I've had blisters as well as the follicular type.
Any area is susceptible to an outbreak. Keep in mind that dermatitis herpetiformis is pressure sensitive, so avoid wearing elastic waistbands, belts, and tight fitting clothing.
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Removing dairy from my diet significantly improved my dermatitis herpetiformis. My skin and itch cleared rapidly afterwards. I suggest you try removing dairy and see if it makes a difference.
Taking the flushing kind of Niacin, Nicotinic Acid (not related to nicotine in cigarettes), sounds counterintuitive because of the flushing, but it really helps.
Selenium, Pyridoxine B6, and Riboflavin B 2 interact with iodine to make thyroid hormones. Adding more of these nutrients would allow a different way for iodine to be taken out of circulation.
Vitamin C, Biotin B 7, Vitamin A, and Vitamin D are important to skin health, as are Omega Threes.
Thiamine B1, Pyridoxine B6, and Cobalamine B12 together have an analgesic effect.
Neuropathy caused by vitamin deficiencies can feel like intense itching and burning. Deficiencies in any of these B vitamins, Thiamine, Niacin, Pyridoxine, and Cobalamine, can present with neuropathy.
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Welcome to the forum, @Nicola flaherty,
Proton pump inhibitors like omeprazole results in negative blood tests for Celiac Disease.
The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511753/
Talk to your doctor about getting off the omeprazole.
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Welcome to the forum, @MMH13,
Yes, @trents and @Scott Adams have good advice.
Do try to get off the ppi, omeprazole.
This study found that people with Celiac taking PPI's like omeprazole are seronegative.
The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511753/
Anemia can affect not only the production of red blood cells, but also white blood cells, like those that make anti gluten antibodies.
Hope this helps!
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Welcome to the forum, @ItchyHell,
Have you tried antihistamines?
Niacin Vitamin B 3 helps.
I use Vintage Traditions Tallow Balm which is absorbed into the skin and calms my dermatitis herpetiformis down.
I'm concerned about your dermatitis herpetiformis being widespread and frequent. Are you getting gluten in your diet?
Eliminating foods high in Iodine will help. High iodide foods include dairy products and crustaceans and other seafood including seaweed. Switch to Pink Himalayan salt, instead of Iodized Salt.
Hope this helps!
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Dr. Derek Lonsdale and Dr. Chandler Marrs have done research on fluoroquinones and how they induce Thiamine deficiency. High dose Thiamine is used to treat being floxxed.
Thiamine also helps UTIs.
References:
A Fluoroquinolone Reaction After Just One Pill
https://www.hormonesmatter.com/fluoroquinolone-reaction-one-pill-cipro/
Who Was I to Question a Doctor? Lessons Learned after Being Floxed
https://www.hormonesmatter.com/question-doctor-lessons-learned-floxed-cipro/
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Hi, @Katanya,
How are you doing? I hope you're feeling better.
Did you decide to do a gluten challenge? You could have an endoscopy and biopsy without a gluten challenge. This would give a baseline with which to compare future endoscopies. I believe a positive blood test for anti gluten antibodies is a positive for Celiac Disease. In the early stages of celiac disease, there's little intestinal damage.
From what I've read, it's normal for enzymes like ALP to run high with exposure to gluten, but they return to normal after resuming a gluten free diet. If they remain high, then checking for osteopenia is a good idea.
Do talk to your doctor and nutritionist about supplementing with vitamins and minerals. Checking for nutritional deficiencies is important because the gluten free diet can be low in some vitamins and minerals, especially if the gluten free diet has been followed for many years.
Checking for nutritional deficiencies should be done before starting supplementation. You will get false results if you are already taking vitamins. Vitamins from food and supplements are absorbed in the intestines and circulate throughout the body in the bloodstream before being absorbed into tissues and organs. Vitamin supplements will make the tests results falsely elevated, thus hiding a deficiency. Be sure not to take supplements for eight to twelve weeks before testing. Check with your doctor.
But, on the other hand, blood tests don't accurately measure the amount of vitamins stored inside cells in organs and tissues where they are utilized. The body will scavenge vitamins stored inside cells in other organs in order to supply the brain and heart with the needed vitamins. You can have a functional vitamin deficiency before there are any changes in blood levels.
Me? I started supplementing because my doctors were clueless about Celiac. Taking all eight essential B vitamins in addition to high dose Thiamine and magnesium is important. Thiamine needs magnesium to make essential enzymes. Thiamine interacts with all the other B vitamins. Thiamine also interacts with ALP. ALP actually helps the absorption of Thiamine. The B vitamins are nontoxic and water soluble, so any not absorbed is easily excreted in urine. There's four fat soluble vitamins, A, D, E, and K. Vitamin D regulates the immune system and can reduce inflammation which will help ALP go down. And Vitamin C helps reduce inflammation, too.
Yes, Thiamine will help with POTS. I was amazed how much better I felt after high dose Thiamine. There's no harm in trying.
References:
Liver abnormalities associated with celiac sprue. How common are they, what is their significance, and what do we do about them?
https://pubmed.ncbi.nlm.nih.gov/7665816/
Serum alkaline phosphatase in adult coeliac disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1552906/
Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/
Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/
Micronutrient deficiencies are frequent in adult patients with and without celiac disease on a gluten-free diet, regardless of duration and adherence to the diet
https://pubmed.ncbi.nlm.nih.gov/36096056/
High Dose Thiamine
https://www.hormonesmatter.com/refeeding-syndrome-thiamine-deficiency/
The importance of thiamine (vitamin B1) in humans
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/
High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition
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Tell me about your high dose Thiamine routine.
What kind of Thiamine are you taking?
How much (mg) are you taking?
When do you take it?
Are you taking a B Complex?
Are you taking Magnesium?
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I would add a B Complex to all that and extra thiamine B 1 and magnesium glycinate, and high dose Vitamin D to get his level up faster.
We need the B vitamins to repair our body and for energy to function. Thiamine B 1 is especially important for athletes. Thiamine works with magnesium. Thiamine and magnesium deficiencies can cause constipation. All eight essential B vitamins work together. Due to poor absorption in celiac disease, supplementing with B vitamins boosts our ability to absorb them.
Here's some reading material that is helpful...
An open-label, randomized, 10 weeks prospective study on the efficacy of vitamin D (daily low dose and weekly high dose) in vitamin D deficient patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6618212/
Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/
The Effects of Thiamine Tetrahydrofurfuryl Disulfide on Physiological Adaption and Exercise Performance Improvement
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073388/
The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/
B Vitamins: Functions and Uses in Medicine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/
Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7019700/
A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/
Effects of thiamine supplementation on exercise-induced fatigue
https://pubmed.ncbi.nlm.nih.gov/8815395/
The effects of endurance training and thiamine supplementation on anti-fatigue during exercise
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/
Hope this helps!
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Welcome to the forum, @Nacina,
What supplements is your son taking?
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I'm agreeing. It's a good thing taking magnesium. And B vitamins.
Magnesium and Thiamine work together. If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well. If you take Magnesium, but not Thiamine, magnesium won't work as well by itself.
Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug. So are proton pump inhibitors PPIs, and SSRIs.
High dose Thiamine is used to resolve cytokine storms. High dose Thiamine was used in patients having cytokine storms in Covid infections. Magnesium supplementation also improves cytokine storms, and was also used during Covid.
How's your Vitamin D?
References:
Thiamine and magnesium deficiencies: keys to disease
https://pubmed.ncbi.nlm.nih.gov/25542071/
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/
High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/
Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile
https://pubmed.ncbi.nlm.nih.gov/33737877/
Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/
Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/
Sulfonamide Hypersensitivity
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I found these articles about the connection between Celiac and joint pain.
Musculoskeletal Complications of Celiac Disease: A Case-Based Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/
And
Intestinal microbiome composition and its relation to joint pain and inflammation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/
And
The gut microbiome-joint connection: implications in osteoarthritis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/
Sounds like it's time to change the diet to change the microbiome.
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Take some deep breaths. Your labs are fine! Your tTg IgA is so low! Well done! Your endomysial IgA is fine. There's not a level on the endomysial test. It's just "yes or no" for if you have celiac disease.
No, it's too early to call it refractory.
What are you eating? Please tell us more than meat and veg.
Do you consume dairy?
Do you consume processed gluten free foods?
Are you taking any prescription medications, herbal supplements, vitamins and minerals?
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Vitamin D deficiency. Not enough Omega Threes.
Another autoimmune disease like arthritis, maybe.
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@BluegrassCeliac, welcome to the forum,
Hydrochlorothiazide HCTZ and other diuretics are known to cause Thiamine deficiency. Anti-anxiety meds, SSRIs, PPIs and sulfa drugs are known to cause Thiamine deficiency.
Thiamine and Magnesium work together. A deficiency in magnesium can hinder how thiamine is utilized.
Cytokine Storms are ameliorated by high dose Thiamine.
Do you have a reaction to sulfa drugs? I have Hypersensitivity Type Four to drugs containing Sulfites.
References:
Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile
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Have you tried taking Niacinamide, the non-flushing form of Niacin Vitamin B 3?
Have you tried non-methylated forms of Cobalamine B12 and Folate B 9?
Nausea and vertigo can be helped by Thiamine. Vitamin D helps with vertigo, too.
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Have your swallowing issues, speech slurring and chronic cramps/nerve pain/muscle fluctuations improved since starting to take Benfotiamine?
Those are all symptoms of Thiamine deficiency disorders.
How much Benfotiamine do you take a day?
Dehydration, dry skin and full body tingling when overheating
in Related Issues & Disorders
Posted
Here's a link...
Thiamine Deficiency Causes Intracellular Potassium Wasting
https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/