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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I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin. The flushing is harmless and goes away the longer Niacin is taken. The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters. TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac. People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies. Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.
I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to become more active and make more blisters. I avoid kelp (nori, seaweed) and crustaceans, eggs, dairy products, and iodized table salt.
Niacinamide and Nicotinic acid are water soluble and harmless. I'd much rather take Niacin than Dapsone with scary side effects.
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Yes, Vitamin D is frequently low in Celiac Disease and Meniere's both.
Ask for an Erythrocyte Transketolace test to check for thiamine insufficiency. Diuretics can cause excess thiamine loss. Benfotiamine is a form of thiamine that improves intestinal health. Thiamine in the form TTFD (Tetrahydrofurfuryl Disulfide) helped improve my Meniere's syndrome.
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Welcome to the forum, @nataliallano,
There's a dozen or so vitamins and about as many minerals that our bodies need to live and thrive. Our vitamins and minerals can become depleted in Celiac Disease due to malabsorption and inflammation, so we need to eat a nutritionally dense diet, and keep inflammation to a minimum.
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No, not if you've got an official diagnosis already.
Let's continue our conversation on this thread...
Thanks
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Welcome to the forum, @nataliallano,
What was done to correct your anemia???
Have you been tested for other nutritional deficiencies besides iron? You will want to get checked for nutritional deficiencies before starting supplementing essential vitamins and minerals.
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Welcome to the forum, @nataliallano,
Have you been tested for Celiac Disease before going gluten free? You may want to continue with a diet containing gluten until all testing us done. At least get a genetic test to see if you have any of the common genes needed to develop Celiac Disease.
Do you have any gastrointestinal symptoms? Some people don't, but they do have symptoms outside of the gastrointestinal tract, like Hashimoto's thyroiditis and Meniere's.
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Try Elliott Overton's site in England... He has a lot of information on his site about Alzheimer's and thiamine and sells TTFD as Thiamax. (Good stuff!)
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It's not allergies.
Segments of the protein in corn, yeast, and dairy resemble segments if the protein gluten. Our antibodies get triggered on the segments no matter where they are from. Then the antibodies get really confused and attack our own cells which have segments resembling the protein gluten in the cell membrane. Hence, Celiac is an autoimmune disease.
Did you have a test for Thyroid Stimulating Hormone (TSH)? Symptoms of hypothyroidism can be very subtle in the early stages.
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The fact that your tTg IgA is slightly elevated after ten years gluten free suggests there's something going on. We want all the antibodies to go away. As long as they are around, our body is in a state of inflammation that can have long term deleterious effects outside of the gastrointestinal tract.
Have you had your thyroid checked recently? Hashimoto's thyroiditis can raise tTg IgA antibodies without gluten.
Maybe you're getting gluten in your diet or from shampoo/toiletries. Maybe you've developed an intolerance to other foods, like dairy, oats, corn, or yeast. One my vitamins used brewer's yeast for a B12 source which, of course, made me ill. One really has to be a bit of a detective.
Do think about giving the AIP diet a try. The AIP diet is strict at first, allowing the immune system to calm down. Later more foods are added back in slowly, checking for possible reactions.
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I have dermatitis herpetiformis outbreaks when I am exposed to foods high in iodine. Iodine can cause dermatitis herpetiformis to flair up badly. So I avoid high iodine foods like dairy products, crustaceans (shrimp, crab, lobster, shellfish), Eggs, and iodized table salt. Spinach, potatoes, kale, and kelp are high in iodine, too.
The antibodies that cause dermatitis herpetiformis are tTg 3 IgA. The tests for Celiac Disease measure tTg 2 IgA antibodies. The dermatitis herpetiformis tTg3 antibodies can hang around for two years or more and become more active when exposed to iodine without having gluten present. Dermatitis Herpetiformis is pressure sensitive and are apt to form under tight clothing like belts, bras and underwear, seams on tight clothing, etc.
I find tallow balm (Vintage Traditions is my favorite gluten free brand) eases the itching and helps heal the blisters without scaring.
Niacin Vitamin B 3 helps the body rid itself of the dermatitis herpetiformis antibodies. Niacin is one of eight essential B vitamins which should all be supplemented together because they all work together in concert. Niacin is instrumental in the body's production of Serotonin, the feel good neurotransmitter. The body turns Niacin into Tryptophan, which is used to make Serotonin. So when I have dermatitis herpetiformis flairs, I also take Tryptophan at bedtime, and Niacin and a B Complex during the day.
Hope this helps! I know how miserable dermatitis herpetiformis can be.
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Hi, @thejayland10,
Do you still consume dairy? Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.
You might try cutting out the processed gluten free foods. Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself).
Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO). SIBO is found in some people who are not responding to a gluten free diet. SIBO can elevate tTg IgA levels.
The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria. Better bacteria can then proliferate.
I followed the AIP diet to get rid of my SIBO. It's a strict diet, but my digestive tract had time to rest and heal. I started feeling better within a few days. Feeling improvement so soon made sticking to the AIP diet much easier.
References:
Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet
https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/
Luminal antigliadin antibodies in small intestinal bacterial overgrowth
Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease
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HypOthyrOidism is HashimOtO's thyrOiditis.
HypeRthyRoidism is GRaves disease.
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Hi, @jeriM,
I can attest to Celiac and eye problems being connected! There's a higher rate of Sjogren's Syndrome in Celiac people than in those without celiac disease.
Sjogren's Syndrome causes dry eyes and can even lead to dry mouth which can alter taste and smell. Have your doctor check for Sjogren's. Correct low Vitamin D, which regulates the immune system. Talk to your nutritionist about including in your diet plenty of Omega Three's. Omega Three's help keep our eyes moist and lubricated. You know how oil floats on water, same thing with our eyes! Fun fact: Our eyes are derived from the same sort of tissues as our digestive tract in a developing fetus.
Oh, check your thyroid function, too. Hashimoto's thyroiditis frequently occurs with Sjogren's. Autoimmune diseases tend to cluster in celiac disease. I also have Diabetes type two.
Discuss with your nutritionist the benefits of a low histamine diet. A low histamine diet can help reduce inflammation and gets those inflammation markers down. I like the Autoimmune Protocol Diet, a Paleo diet that promotes intestinal health.
Best wishes! Keep us posted on your progress!
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I agree, low carb/no carb is the best way to go. I follow the Autoimmune Protocol Diet, a ketogenic Paleo diet, for my diabetes and celiac disease. I keep carbs low. The AIP diet helps immensely to keep my blood glucose levels in range. I supplement with Benfotiamine, a form of thiamine, because the pancreas uses lots of thiamine to make insulin and digestive enzymes. Thiamine deficiency can precipitate diabetes.
Thiamine is needed to turn carbohydrates into energy. In an effort to ration thiamine if there's insufficient thiamine, the body turns excess carbohydrates into fat and stores it, hense the rise in obesity. (Our bodies are naturally more efficient at burning fat for fuel.) Highly processed foods do not contain sufficient vitamins and minerals needed for the body to process them into energy and enzymes necessary for the body to function and grow properly. This is called High Calorie Malnutrition by Dr. Chandler Marrs and Dr. Derrek Lonsdale (Hiding In Plain Site:Modern Thiamine Deficiency). Dr. Lonsdale has studied thiamine in children and adults with diabetes and other diseases for decades. Their website "hormones matter" is very informative.
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Do keep in mind that Celiac Disease is genetic, so all first degree relatives (parents, siblings) should be checked for celiac disease as well.
Thiamine deficiency is common in breastfeeding mothers and their babies, even in countries where people are well fed and eat healthy. A high carbohydrate diet requires more thiamine to turn those calories into energy. Mothers on a high carbohydrate diet can be deficient in thiamine which also causes the infant to be deficient.
DKA is found in children with thiamine deficiency. Thiamine deficiency correction is part of DKA treatment. Thiamine deficiency needs to be addressed and corrected quickly and maintained. Ask for an Erythrocyte Transketolace test for thiamine deficiency.
I've experienced this myself. Diabetics continue to lose thiamine due to poor renal uptake. Thiamine should be supplemented daily. Thiamine is a constant in my life which helps immensely with my diabetes.
References:
Thiamine deficiency in pregnancy and lactation: implications and present perspectives
https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/
Pediatric thiamine deficiency disorders in high‐income countries between 2000 and 2020: a clinical reappraisal
https://pmc.ncbi.nlm.nih.gov/articles/PMC9290709/
Hiding in Plain Sight: Modern Thiamine Deficiency
https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
The Impact of Thiamine Treatment in the Diabetes Mellitus
Thiamine as adjunctive therapy for diabetic ketoacidosis (DKAT) trial protocol and statistical analysis plan: a prospective, single-centre, double-blind, randomised, placebo-controlled clinical trial in the USA
The relationship between lactate and thiamine levels in patients with diabetic ketoacidosis
https://pubmed.ncbi.nlm.nih.gov/23993771/
Acute thiamine deficiency in diabetic ketoacidosis: Diagnosis and management
https://pubmed.ncbi.nlm.nih.gov/17006386/
Thiamine status during treatment of diabetic ketoacidosis in children - tertiary care centre experience
https://pubmed.ncbi.nlm.nih.gov/36440592/
Low thiamine levels in children with type 1 diabetes and diabetic ketoacidosis: a pilot study
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Welcome to the forum, @mytype1diabetes,
Your statement that your daughter has become itchy and has hair loss made me think of iron deficiency. Those were the same symptoms i had when I was iron deficient. Was she tested for iron deficiency anemia at the time of her diabetes diagnosis?
Seems in the early stages of iron deficiency anemia, blood glucose levels can be falsely elevated. Treating Vitamin D deficiency can also help immensely.
Vitamin D deficiency, iron deficiency, and deficiencies in the eight B vitamins, especially thiamine, can occur in Celiac disease. Changes in stool can be caused by iron or thiamine deficiency.
I was diagnosed with type two diabetes and had the same deficiencies. I would not feel comfortable waiting three to six months for a recheck. I would get the iron deficiency checked right away.
Hope this helps! Sending prayers!
References:
The Effect of Iron Deficiency Anemia on Hemoglobin Glycation in Diabetics and Non-diabetics
Effects of iron deficiency anemia on hemoglobin A1c in type 1 diabetes mellitus
https://pubmed.ncbi.nlm.nih.gov/10453183/
Impact of vitamin D deficiency on iron status in children with type I diabetes
Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations
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Thiamine improves Alzheimer's. Thiamine has anticancer effects in high doses. Thiamine helps improve Hashimoto's. I'm linking information you may find helpful.
Evaluation of neuroprotective role of benfotiamine in Alzheimer's disease model: A randomized control study
https://pubmed.ncbi.nlm.nih.gov/40176579/
Supplemental thiamine as a practical, potential way to prevent Alzheimer's disease from commencing
https://pmc.ncbi.nlm.nih.gov/articles/PMC8319660/
Benfotiamine and Cognitive Decline in Alzheimer’s Disease:
https://pmc.ncbi.nlm.nih.gov/articles/PMC7880246/
Mega-Dose Thiamine: Beyond Addressing “Deficiency”
https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency
The Missing Link to Thyroid Fatigue
https://thyroidpharmacist.com/articles/thiamine-and-thyroid-fatigue/
The Effects of Thiamine on Breast Cancer Cells
https://pubmed.ncbi.nlm.nih.gov/29914147/
Yay, Mags for improving your Meniere's! I'm so happy you've had improvement with Vitamin D!
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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 of years. It is absorbed into the skin better than creams made from plants. It helps prevent or lesson scarring. See the study below.
Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide
"The combination of tetracycline and nicotinamide can be recommended as a useful therapy for patients where dapsone is not available or for patients who do not tolerate dapsone."
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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.
Vitamin D deficiency leads to hormonal problems, including menstrual problems. Vitamin D needs Thiamine to activate it.
Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine. Consumption of any foods high in carbohydrates can cause a drop in thiamine. This is called high calorie malnutrition.
Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies. There's eight B vitamins that all work together in concert. They are water soluble. They can be hard to absorb by inflamed intestines. Vitamin A can improve acne.
I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C. Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares.
Replenishing your vitamin and mineral stores will help heal and feel better faster. Talk to your nutritionist and doctor about supplementing.
Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines.
@Alibu and I were just discussing diagnosis without obvious villus damage here.
This study followed people who showed no or little villi damage at first....they accrued more damage over time.
Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice
https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/
There's a move to be less reliant on endoscopy for diagnosis.
Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment
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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, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation."
They used 100 mg of thiamine three times a day. They don't say which kind of thiamine was used. Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO. Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses.
The old "gold standard" diagnosis is changing. It must be confusing for doctors as well. I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves.
Keep us posted on your progress!
P.S. here's another link....
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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 I sent show that damage at Marsh 3C or 4 will develop over a longer period of time. Newer diagnosis criteria would diagnose you with Celiac with your HLA DQ 2.5 genes and high antibody levels alone. You would benefit by following a gluten free diet.
I have type two diabetes. I used to wake up with migraines if I ate high carbohydrate foods before bed. My blood glucose level stayed too high throughout the night. I'd wake dehydrated, foggy, and headachy/migraine developing the next morning. I was low in Thiamine. Thiamine is needed to make insulin. Diabetics have a greater metabolic demand for thiamine because they lose more thiamine in their urine. 98% of diabetics are thiamine deficient. Diabetes is another autoimmune disease that can accompany celiac disease. Have you had an A1C test?
Eating a diet heavy in carbohydrates uses up available thiamine quickly. If you don't have sufficient thiamine, the body stores carbohydrates as fat. The SIBO bacteria flourish with a high carbohydrate diet. MCAS develops as the body fights the SIBO.
Thiamine improves MCAS. Mast cells make histamine and release it as part of the inflammation response. Mast cells can become hypersensitive and release histamine at the least provocation in Thiamine insufficiency. Mast cells need Thiamine to help hold their wad.
MCAS often occurs with and is exasperated by SIBO. I found the Autoimmune Protocol Diet (Dr. Sarah Ballantyne) helps with both. This Paleo diet starves out the SIBO bacteria and calms the MCAS. If you change your diet, you change your intestinal flora. Following the AIP paleo diet and thiamine made a noticeable difference in my health fairly quickly.
Thiamine works with the other B vitamins to make enzymes that keep the body functioning well. A B Complex, Vitamin C, and extra thiamine like Benfotiamine will help immensely.
I hope this helps. I had to decide that my Celiac genes were switched on and causing health problems even though I did not have the high antibody levels and visible damage in my intestines needed to make a textbook diagnosis. You know your body best. I knew Celiac was my problem. I made the necessary changes and feel much better for it.
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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 or TTFD (tetrahydrofurfuryl disulfide). These forms get into the brain easily. Magnesium Threonate gets into the brain easily, too, and helps thiamine work. My brain gave a sigh of relief when I first took it, and no migraines.
Yes, lowering histamine levels helps one feel better, too. Vitamin C and B12 help reduce histamine. A low histamine diet can help, too. DAO supplements lower histamine, as well. DOA is a digestive enzyme we can run short on.
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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 hormone and regulate the immune system. Vitamin D 3 is the form that the body can utilize well. I was prescribed the synthetic firm D2 and my body didn't like it. I know getting my Vitamin D up in the eighties made a world of difference to me. My depression improved and I felt so much better at higher levels.
I prefer Life Extension brand for many vitamins. The important thing is to read the label and watch out for fillers like rice flour. This may help.
Keep us posted on your progress!
Hypothetical question about antibodies
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
@Zuma888,
The antibodies produced in response to gluten are made in the intestines. When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream. Once in the blood stream, the antibodies can be measured with tTg IgA tests.
Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood.
Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests.
So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing. You will still be making antibodies which will still be causing inflammation and damage to the intestines and body. Histamine is released as part of the immune response to gluten. High histamine levels lead to food sensitivities, brain fog, and body aches.
The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals. Malabsorption of fats can cause changes in stools. Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine. Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins. Vitamin D is needed to regulate the immune system.
One gene is all that's needed to develop Celiac disease. I know a Celiac diagnosis is a change that can be difficult to get your head around. Many people go through the five stages of grief. One stage is "bargaining". Sounds like you're stuck there. Every little cheat counts to your detriment. But sticking to a gluten free diet, makes every meal a success.
Read the comments below the article...
Best wishes! Keep us posted on your progress!