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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Welcome to the forum, @eekunique!
According to recent research, updates to the gluten challenge are being implemented.
Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.
While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.
Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods. Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.
References:
https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/
And...
Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader
"In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine) following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al. While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Lactase is produced in the tips of the villi lining the small intestine. These villi get damaged by attacks from antibodies in CeD and can no longer produce lactase. Even with the gene, lactase cannot be produced if there's villi damage.
Definitely get the kids tested as well. Low Vitamin D, anemia and and gastrointestinal symptoms signals they may have inherited Celiac, too.
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Yes, I do think all of these supplements have helped my overall health and at least has slowed the progression of osteopenia.
The Silk coconut yogurt has pea protein powder or rice flour, both of which contain irritating lectins. The AIP diet eliminates peas and legumes and grains including rice, and highly processed things like this.
Have you tried taking probiotics and skipping the yogurt for now?
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Hi, @Raquel2021,
I follow a Paleo diet and stick close to the AIP diet. I do eat sources of dietary calcium such as broccoli, turnip greens, kale, salmon, and oranges. I do take calcium supplements.
Unfortunately, that was not always the case. Early in my undiagnosed years, I developed lactose intolerance and casein allergy with very bad neurological symptoms, so I avoided dairy as much as possible. I did not recognize the importance of supplementing calcium, thought I was eating enough broccoli, and am now dealing with osteopenia. I've cracked a couple of ribs, broken my fibula (outside lower leg bone), and crushed three vertebrae, all in separate incidents.
Things I've learned along my journey....
Pregnancy can pull calcium out of the mother's bones for the baby's bones. There's an old wives' tale that says for every child the mother loses a tooth.
Medications can cause calcium loss. Proton pump inhibitors, antidepressants, sleep aids, highblood pressure medications, thiazide and loop diuretics, diabetic medications, thyroid replacement therapy, lithium, corticosteroids, and some forms of birth control cause bone loss.
Since I have been exposed to most of those medications that induce calcium loss and avoid dairy like the plague, I choose to supplement Calcium. Calcium deficiency can cause neurological symptoms like confusion, anxiety, depression, memory loss and muscle cramps.
Calcium supplements that I tolerate well is in the form calcium malate citrate. This form is absorbed better than some other forms like calcium oxide. Calcium lactate is made from shells of muscles and oysters. If you have an allergy to shellfish or crustaceans like I do, do not take calcium lactate.
Yes, balance calcium and magnesium intake. Twice as much Calcium as magnesium is a good rule of thumb. Take calcium and magnesium at different times so they don't compete with each other for absorption.
Bones need trace minerals like Boron, Copper, Manganese, Selenium, Iron, and Zinc, too.
Bones need Vitamin D. Vitamin D level should be about 80 ng/L or above. At this level, Vitamin D can function as a hormone like it's supposed to do, being a powerful immunoregulator, reducer of inflammation and bone builder.
Bones need more vitamins: Vitamin K, Riboflavin Vitamin B 2, Pyridoxine B 6, Folate B9, Choline, and Cobalamine B12. And of course Thiamine B 1 to provide energy for all that bone building work.
It's very difficult to eat enough to correct nutritional deficiencies. Supplementing while the intestines are healing is beneficial. Do discuss all supplements with your doctor and nutritionist.
Perhaps @cristiana can join us and share about Dexa scans.
Hope this helps!
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The Autoimmune Protocol Diet (AIP diet) is very helpful in healing the intestines.
The AIP diet is a very basic meat, fish, veggies, fruit diet.
No dairy, no grains, no legumes, no nightshades, no seeds, no nuts, no processed foods. These foods have components that are very irritating to the digestive system.
Three weeks on the AIP diet and one's system calms down. Then additional foods are added back one at a time to check for reactions.
Here's further information...
An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/
And...
Can the paleo diet help people with ulcerative colitis?
https://www.medicalnewstoday.com/articles/is-paleo-diet-good-for-ulcerative-colitis
The AIP diet really helped me. Dr. Sarah Ballantyne's book The Paleo Approach is most helpful.
Best wishes
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Welcome to the forum, @Flaura001!
Have you explained your anxiety to the doctor and nurse doing the endoscopy? They may be able to give you a medication to take at home before your appointment to relax you. (In which case, someone should accompany you.) In light of your anxiety, they may be able to reschedule you sooner, or put you on the list to fill in for other people's cancelled appointments.
Having an endoscopy now can provide a baseline of how much inflammation there is in your intestines and make sure there's not other things going on. The first endoscopy can be used to compare future endoscopies if the need arises.
Since you have stopped eating gluten, you need to ask the gastroenterologist if you need to do a gluten challenge. (Ten grams of gluten daily for two weeks prior to the endoscopy.) A gluten challenge will cause more symptoms and active inflammation in the small intestine. This is what the doctor is looking for, signs of active Celiac disease. Once you start a gluten free diet, the inflammation goes down and the small intestine starts healing, so they might misdiagnose you. This misdiagnosis is not a good path to take.
I believe you have a boyfriend who works with wheat....that's probably why your antibody level is still high. Wheat dust can go up your nose, down your throat and into your digestive system and cause continuing symptoms. The boyfriend might need to clean up a bit before you let him in the house....
Let us know what you decide. We're here to help and support.
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Ask for a genetic test to see if you have any of the known genes for Celiac Disease. Sounds like doing a gluten challenge could set back the progress you've made so far.
Get checked for nutritional deficiencies!
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Welcome to the forum!
You could ask your doctor for a genetic test to see if you have any of the common genes for Celiac Disease. Having the genes simply means you have the potential to develop Celiac Disease. Not all Celiac genes have been identified though. Yes, Celiac does happen in people of color.
Also get your rash biopsied by a dermatologist who understands how to biopsy for Dermatitis Herpetiformis, the rash of Celiac Disease. The rash appears after ingesting gluten.
According to recent research, updates to the gluten challenge are being implemented.
Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.
While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.
Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods. Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.
References:
https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/
And...
Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader
"In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine) following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al. While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Hope this helps! Keep us posted on your results!
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How are you doing?
How much Thiamine are you taking? You can increase the amount of Thiamine you take. I took about 1000 mg of Thiamine throughout the day. I took smaller doses 300-500 mg every three to four hours. Magnesium helps Thiamine work properly, so adding a magnesium glycinate or citrate supplement will help as well.
Hope things are going better for you.
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Malabsorption in Celiac Disease causes malnutrition because we can't absorb nutrients in the small intestine. Proton pump inhibitors can make this worse because PPI's lower stomach acid. H. Pylori infection can cause low stomach acid and messes with parietal cells in the stomach. Parietal cells secrete the intrinsic factor needed to absorb Cobalamine Vitamin B12.
Low stomach acid, hypochlorhydria, or no stomach acid, Achlorhydria, also occurs in Niacin Vitamin B 3 deficiency.
The gallbladder uses Thiamine Vitamin B 1 to make and secrete bile which helps digest fats. Bile is what makes our poop brown. Other poop colors can be a result of the gallbladder not working properly due to Thiamine deficiency.
The pancreas uses a great deal of Thiamine Vitamin B 1 to make and secrete insulin and digestive enzymes. Thiamine deficiency is linked to the development of diabetes. I developed Type Two Diabetes while deficient in Thiamine. I also had my gallbladder removed because it wasn't working properly and had become infected. Thiamine helps our bodies fight off infections. Antibiotics (like those used to treat H. Pylori) can cause Thiamine deficiency.
Thiamine deficiency can cause abdominal pain (gastrointestinal beriberi), brain fog, peripheral neuropathy (tingling in arms and feet), dizziness and blurry vision. Some of these symptoms also occur in B12 deficiency and Niacin deficiency. The eight essential B vitamins all work together, so deficiency symptoms can overlap. If you are low in one B vitamin, you're probably low in all the others, too. Blood tests are not reliable measures of B vitamins, but...Don't supplement with vitamins for twelve weeks before getting blood tests done, otherwise your test results will show false high results. Vitamins circulate throughout the body in the bloodstream. Blood tests do not measure how well a vitamin is being utilized inside cells and organs. One can have a Thiamine deficiency in an organ, but have "normal" blood levels. An Erythrocyte Transketolase test is a better option for measuring Thiamine levels.
More than the current RDA of Thiamine is needed if one eats a diet high in carbohydrates (like rice). Tannins in tea, coffee, caffeine, and chocolate all contain chemicals that break apart thiamine making it unusable. So be sure to avoid eating these at the same time as Thiamine supplements.
Thiamine also helps with MCAS and Histamine Intolerance by helping mast cells not to release histamine. Thiamine helps fight infections caused by viruses (RSV, CoVid) and bacteria. Thiamine helps regulate intestinal bacteria, helping beneficial bacteria grow.
I corrected my nutritional deficiencies caused by Celiac Disease. I have been able to control my diabetes with a Paleo diet and Thiamine (Benfotiamine) supplementation. I supplemented High Dose Thiamine (with Thiamine Hydrochloride, Benfotiamine, and TTFD --tetrahydrofurfuryl disulfide) as Dr. Lonsdale and Dr. Marrs recommend (Hiding in Plain Sight, linked below). Thiamine supplementation has improved my health dramatically.
Thiamine is water soluble and easily cleared by the kidneys. The World Health Organization recommends taking (500 - 2000 mg/day) Thiamine and looking for improvement. I had improvement within an hour.
Keep us posted on your progress!
References:
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
The Relevance of Thiamine Evaluation in a Practical Setting
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551939/
The role of pancreas to improve hyperglycemia in STZ-induced diabetic rats by thiamine disulfide
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9209469/
Adaptive regulation of pancreatic acinar mitochondrial thiamin pyrophosphate uptake process: possible involvement of epigenetic mechanism(s)
https://pubmed.ncbi.nlm.nih.gov/28729247/
Neuropsychiatric Disorders Associated With Vitamin B12 Deficiency: An Autobiographical Case Report
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8858590/
Gastric Parietal Cell Physiology and Helicobacter pylori–Induced Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715393/
Role of Helicobacter pylori infection on nutrition and metabolism
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4177464/
The Effects of Vitamins and Micronutrients on Helicobacter pylori Pathogenicity, Survival, and Eradication: A Crosstalk between Micronutrients and Immune System
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8942682/
Update on the diagnosis and management of exocrine pancreatic insufficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880257/
Exocrine Pancreatic Insufficiency and Malnutrition in Chronic Pancreatitis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462188/
Pancreatic Diseases and Microbiota: A Literature Review and Future Perspectives
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7692447/
Exocrine Pancreatic Insufficiency in Type 1 and Type 2 Diabetes
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Yes, knowledge is valuable. I'm here to share what I have learned the hard way so that others will have an easier journey. I've struggled with the same things I write about. My university degree in microbiology was earned in pursuit of answers. I'm thankful @Scott Adams has provided a place we can share our experiences.
Do discuss these options with your doctor and nutritionist. Many doctors are not as up to speed on Celiac Disease as those of us who have lived with it for a lifetime.
Your jungle guide,
kk
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I apologize that one of those articles upset you. It wasn't a well done study because no one was checked for nutritional deficiencies during the study. Taking multivitamins doesn't correct existing nutritional insufficiency or deficiency immediately. The study looked at vitamin usage ONLY in the six weeks before and after conception. And some of those using multivitamins already had problems.
Quoting from the article...
"Compared with non-users, multivitamin and folate-only users were more likely to be nulliparous, 25–35 years old and to have lower BMI. They reported more often planned pregnancies, a longer waiting time to pregnancy, more frequent use of infertility treatment and a history of miscarriage."
Here's a much better article...
Evidence based recommendations for an optimal prenatal supplement for women in the US: vitamins and related nutrients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9275129/
And...
Vitamin D and miscarriage: a systematic review and meta-analysis
https://pubmed.ncbi.nlm.nih.gov/35637024/
Many Celiacs have the MTHFR genetic mutation which can result in Histamine Intolerance. Many Celiacs have Histamine Intolerance. High histamine levels are problematic in pregnancy.
Taking methylated forms of vitamins, following a low histamine Paleo diet, and supplementation with DAO helps.
Other helpful articles....
Histamine Intolerance Originates in the Gut
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/
And...Effects of histamine and diamine oxidase activities on pregnancy: a critical review
https://academic.oup.com/humupd/article/14/5/485/812106
And...MTHFR gene polymorphism and homocysteine levels in spontaneous abortion of pregnant women
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8290815/
Keep us posted on your progress!
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Welcome to the forum, @Mswena!
Your reaction sounds more like Histamine Intolerance than a glutening. Yes, Histamine Intolerance produces gastrointestinal symptoms like bloating!
Menthol is derived from plants in the mint family, or produced synthetically. Menthol stimulates histamine release.
Our bodies make histamine. Histamine is a neurotransmitter that makes us alert. Histamine is produced by mast cells as part of an immune or autoimmune response to things like bacteria, viruses, and gluten.
So, histamine has its uses, but too much can be bad. Our bodies can break down histamine, but if there's lots of histamine and not enough tools needed to break down histamine, then there's a problem.
Mast cells can become over excitable (especially in Thiamine insufficiency) and release histamine at the least provocation. Foods can also contain histamine. Certain foods can prompt mast cells to release histamine, as in food allergies. Certain chemicals like perfumes can trigger histamine release. Menthol triggers histamine release.
Histamine Intolerance and Mast Cell Activation Syndrome are often found in Celiac Disease. Following a low histamine diet, and supplementation with Diamine Oxidase (DAO) and Betaine, as well as Thiamine, Vitamin C, Cobalamine, Folate and Pyridoxine helps provide the body with the tools it needs to break down histamine. It worked for me!
References:
Histamine Intolerance Originates in the Gut
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/
And...
TRPM8 mediates cold and menthol allergies associated with mast cell activation
https://pubmed.ncbi.nlm.nih.gov/20934218/
And...
Non-responsive celiac disease may coincide with additional food intolerance/malabsorption, including histamine intolerance
https://pubmed.ncbi.nlm.nih.gov/33268003/
And...
Histamine Intolerance—The More We Know the Less We Know. A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/
Keep us posted on your progress!
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Whether they are from food or supplements consumed, vitamins can pass directly into the bloodstream from the digestive tract. Blood tests for vitamins can be inaccurate. These tests do not give much information about how well the vitamins are being utilized inside cells of organs and tissues. Cells can have depleted vitamin stores inside but the body shows no deficiency in blood levels. This depleting of stores is done in order to provide important organs like the brain and heart with sufficient nutrients via the bloodstream.
Supplements should be discontinued eight to twelve weeks prior to testing vitamin levels.
Because the eight essential B vitamins all need each other to function properly, a B Complex supplement is a good idea. Just supplementing one or two B vitamins can precipitate deficiencies in others. The B Complex vitamins are water soluble so any excess the body doesn't need is easily excreted.
Minerals like magnesium, calcium, zinc and iron are needed to work with the B vitamins and Vitamin C.
Correction of nutritional deficiencies is part of proper follow up care for Celiacs. It's important to correct deficiencies quickly so as not to leave permanent damage, so discuss with your doctor about the benefits of supplementing essential vitamins while healing from CeD. However, doctors are not given much nutritional education, so ask for a referral to a nutritionist who can help you develop a nutritionally dense diet.
I've experienced miscarriages, too, so I understand how you feel.
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Were you taking vitamins at the time the blood tests were done?
Were you checked for vitamins other than B12, folate and iron?
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Welcome to the forum!
We can have an immaculately gluten free diet for years, but until we address and correct the nutritional deficiencies inherit in Celiac Disease, our CeD is not "fully controlled".
Gluten free diets can be notoriously lacking in essential vitamins and minerals necessary for a successful pregnancy. Additionally, malabsorption due to intestinal damage caused by the autoimmune reaction in CeD must be addressed.
Nutritional status of the mother prior to getting pregnant is as important as the mother's nutritional status throughout the pregnancy.
Let's learn more about nutrition...
Evidence based recommendations for an optimal prenatal supplement for women in the US: vitamins and related nutrients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9275129/
And...
Vitamin D insufficiency as a risk factor for reproductive losses in miscarriage
https://pubmed.ncbi.nlm.nih.gov/34937516/
And...
Vitamin B3 levels in women who experience first-trimester miscarriage
https://pubmed.ncbi.nlm.nih.gov/33866568/
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Call and ask for an Erythrocyte Transketolase test to be done on the sample you've given. This tests how well Thiamine is being utilized. Thiamine is not one of those vitamins routinely checked.
Blood tests aren't really accurate measurements of vitamins inside cells where they are used. Blood tests can reflect vitamin supplements you've taken and even how much you've absorbed from food in the past couple days.
You can have vitamin deficiency symptoms before blood levels detect a deficiency. The body keeps certain levels of vitamins in the bloodstream so the vitamins can go to important organs like the heart and brain, but it does this by depleting vitamins stored inside cells, resulting in deficiencies inside cells of tissues and organs.
Thiamine will also help you absorb and utilize more iron.
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On 10/8/2023 at 8:36 PM, currydmc said:
Interesting, most weeks I can drink below the govt recommendation limit 14 units, with approx 2 days off between drinking (only evening after food). Once my health returns I ideally want to cut down more . I'm bringing it up with the nutritionist on Tuesday.
The only thing that didn't give me grief since diagnosis is that I have no craving for gluten, I honestly don't miss it. Was super hungry for first two weeks but assumed that was a good sign!
Started on iron+B12 slow release caplets today, they give me gas and IBS but just a fraction of my GP prescribed ferrous fumarate pill trouble (those bad boys HURT!)... eventually my gut has to be repaired enough to actually absorb stuff....
How are things going?
What did your nutritionist say?
I'm concerned about your drinking and malabsorption of CeD might be causing a subclinical deficiency in Thiamine Vitamin B 1.
Early symptoms of insufficient Thiamine include depression, anxiety, irritability and brain fog. Getting easily agitated and stressed with others are more symptoms. I had these symptoms while I was deficient in Thiamine. My doctors missed it completely. They gave me SSRIs which causes further loss of Thiamine. I relied on what I had learned in university in nutrition and microbiology. I started supplementing with High dose Thiamine, B Complex vitamins and magnesium. (Pyridoxine Vitamin B 6 helps tremendously with OCD.) I had improvement within an hour.
Vaccines, including flu shots, also can cause a subclinical Thiamine insufficiency.
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
And...
Hiding in Plain Sight: Modern Thiamine Deficiency
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2 hours ago, SportySue said:
I had DH about 12 years ago. I overdosed on gluten knowingly. Treated this yucky skin plague with…Liquid Bandage (this product has addt’l titles) applying a coverage over each blister spot! I maintained doing that for a week & it stopped itching, discomfort & cleared rash. The product has anti-bacterial properties that probably jump started healing. P.S. eating supposed gluten-free food stuff for Celiacs is not strict enough…no such gluten-free food called oatmeal or corn. Originally, according to Elaine,Gotschall and Mr’s Haas (brothers) , celiac is mainly a carbohydrate intolerance. I found this to certainly be true for me. Good luck have a safe Thanksgiving meal. Sue Duby Macomb MI
Do be aware that the Specific Carbohydrate Diet can be low in Thiamine Vitamin B 1.
Nutritional Adequacy of the Specific Carbohydrate Diet in Pediatric Inflammatory Bowel Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653423/
"Seventy-one percent of participants' daily intakes were below the RDA for vitamins B1 and sixty-seven percent for B9. One-hundred percent of participants ' daily intakes were below the RDA for vitamin D."
Do take a B Complex supplement, Vitamin D and extra Thiamine in the form Benfotiamine. Benfotiamine has been shown to promote intestinal healing, too.
Low-carbohydrate diet optic neuropathy
https://pubmed.ncbi.nlm.nih.gov/840092/
Another example of Thiamine deficiency in low carbohydrate diet...
And...
Thiamine helps!
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
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39 minutes ago, Acacia Voynar said:
A BIG thank you for ALL of that information. I appreciate you taking time out of your day to help me. I'm going to digest what you have told me (I am feeling a bit overwhelmed by all the information) and start taking some action. One more question - are you familiar with any nutritional deficiencies that cause amenorrhea?
Yes, Thiamine deficiency will cause amenorrhea. Vitamin D deficiency will contribute to amenorrhea.
High dose Thiamine supplementation has been shown to improve fibromyalgia.
High-dose thiamine improves the symptoms of fibromyalgia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669831/
And...
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
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Yes, I understand how frustrating doctors can be. They are not well trained in recognizing nutritional deficiencies.
Thyroid problems occur in subclinical Thiamine deficiency. The gallbladder starts being problematic in subclinical Thiamine deficiency. Thiamine also helps Mast cells not to release their histamine, so your histamine levels should go down.
Benfotiamine is an over-the-counter form of Thiamine that can help correct subclinical thiamine deficiency.
Thiamine needs magnesium to make enzymes together. Magnesium Glycinate is a form gentle on the digestive system.
The eight B vitamins work together, so an active B 100 Complex would provide them.
These are supplements I took to correct my deficiencies. I hope this helps.
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Yes, your symptoms sound like they are related to vitamin and mineral deficiencies.
Don't be taking multivitamins, nor vitamin and mineral supplements in the eight to twelve weeks prior to having blood tests done to check for nutritional deficiencies. Acacia, your blood tests probably reflect the multivitamin you've been taking. Vitamins can enter the bloodstream directly from our digestive tract. They circulate throughout the body, replenishing every cell. Excesses are filtered out through the kidneys. By waiting several weeks after stopping supplementation, more accurate measurements of what your body is absorbing would be made.
There are some tests that check how well a vitamin is being utilized in the body. They check for the end products after a vitamin has been used. One such test is the Erythrocyte Transketolase test that sees how well Thiamine is being utilized.
We do need to talk about diet because, ideally, that is where vitamins and minerals should come from.
Gluten based flours are required to be enriched with vitamins and minerals. Removing gluten from the diet also removes the vitamin and mineral supplements added by the manufacturers. Gluten free facsimile foods are not required to be enriched with vitamins and minerals. So if you are substituting gluten free facsimile foods filled with carbohydrates, proteins, and fats without the corresponding vitamins and minerals needed to process them into energy, you are doing yourself a great disservice.
A diet that includes fresh meat, fruits, and vegetables is beneficial because these foods contain micronutrients and beneficial natural compounds we are only beginning to understand. I highly recommend the Autoimmune Protocol Diet, a Paleo diet.
Excluding certain inflammatory foods like dairy, high plant lectins (grains, pseudo grains, grasses), and nightshades (which contain glycoalkaloids that promote leaky gut syndrome) is needed in order to reduce inflammation, repair gut permeability, and promote healing.
At the same time, providing essential vitamins and minerals is needed for healing.
Vitamin D (the form D 3 is better assimilated than D 2, the synthetic form often prescribed by doctors) will help regulate the immune system at levels above 78 nmol/L.
Replenishing my Thiamine insufficiency made a major improvement in my journey. Thiamine Vitamin B 1 is the B vitamin that becomes depleted the quickest. Symptoms of Thiamine insufficiency seem to wax and wane due to dietary consumption of foods high in Thiamine or high in carbohydrates.
Thiamine needs magnesium to make important enzymes. If there is a magnesium deficiency, Thiamine won't be able to work resulting in a functional thiamine deficiency. So many thiamine deficiency symptoms overlap with magnesium deficiency symptoms.
These symptoms include:
Headaches & migraines
Feeling fatigue, muscle weakness, and muscular pain or cramping
Sleep issues (both insomnia and sleeping too much)
GI issues (bloating, loose stools or constipation) aka gastrointestinal beriberi
Depression, anxiety and irritability
Mental struggles: Terrible brain fog, difficulty concentrating, feeling confused, having a hard time remembering words and forming sentences
Neuropathy in my feet
Urinary incontinence
Random shivers / feeling extra cold
Ridges in nails
Occasional balance issues
The cognitive and neurological symptoms are especially worrisome. Thiamine deficiency can affect the brain, causing white spots on MRIs. Thiamine deficiency needs to be corrected as quickly as possible so no permanent damage is done.
I supplemented with high dose Thiamine, 500 - 2000 mg of Thiamine Hydrochloride. Later I added Allithiamine and Benfotiamine, forms of Thiamine shown to get into cells easily and improve deficiency symptoms quickly.
I also took a B 100 Complex to ensure I was getting sufficient B vitamins. The eight B vitamins work together, depending on each other for enzymes and energy to work properly.
Magnesium Glycinate is a well absorbed form of magnesium supplements. Magnesium and calcium work together, so a calcium supplement is a good idea.
I hope this helps.
Thiamine deficiency disorders: a clinical perspective
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I've come across a couple of scientific studies that show there's minimal benefit in gluten tolerance in Celiacs with hookworms.
One study concluded Celiacs with hookworms occasionally exposed to small amounts of gluten may show less immediate damage than a Celiac without hookworms, but with loss of quality of life.
It sounds like you're eating more gluten than an occasional small amount. It's concerning.
Effect of Hookworm Infection on Wheat Challenge in Celiac Disease – A Randomised Double-Blinded Placebo Controlled Trial
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0017366
And...
Randomized, Placebo Controlled Trial of Experimental Hookworm Infection for Improving Gluten Tolerance in Celiac Disease
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Welcome to the forum!
Yes, many of us only develop more severe symptoms after years of mild symptoms which often get attributed to other factors and overlooked.
Do talk to your doctor and nutritionist about supplementing with vitamins and minerals while you are healing. Subclinical deficiencies can affect your health. Thiamine Vitamin B 1 helps improve nausea. Vitamin D, the eight essential B vitamins, and magnesium levels are often low in newly diagnosed Celiacs.
Hope this helps.
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8 hours ago, mzfixit said:
I had to go back to my emails to see what the three were, but when they reply they do not include the original message…sneaky cheeks AND they put their response in a link that expires in 14 days so it is no longer their either. 😡 Just off memory I believe one of the grains they did not mention is triticale, and at the time I though glutenous rice contain gluten, but I have since learned differently so that one was one I asked about but the other was in a list of grains containing gluten I found on the internet and was matching to the list of grains they said they did not use. Maybe Kamut? I would have to send another request to look back through this group because someone did post their initial response one time with the list included. Just aggravating that they cant be forthcoming when we suffer so much.
Thank you for the wealth of info. I will print it out and use it as a reference to get me on track. I appreciate you going to the effort to type that out for me. And yes, I have MTHFR variants. I am compound heterozygous for c677t and a1298c. :-(.
😿 MTHFR variants. Does your doctor have you on Methylfolate?
Microcrystaline cellulose is made from the stalks of different plants around the world. It's doubtful they would contain gluten which is concentrated in the seeds of wheat crops. It's admirable they are trying to find uses for waste products (stalks of food crops).
It's more likely you're having a reaction to the medication itself. I have hypersensitivity type four reactions to many drugs especially sulfa based drugs.
Fixed drug eruption due to levocetirizine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4936078/
There's also more severe, sinister reactions...
Levocetirizine-induced Psychiatric Disorders in a Pediatric Patient: A Case Report and a Pharmacovigilance Database Analysis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5497403/
Drug reactions are no fun. I've had some scary experiences, too. What helped me the most was correcting subclinical vitamin deficiencies by taking an "active B Complex" with all the methylated forms of the B vitamins and taking high dose Thiamine (Benfotiamine and TTFD - Tetrahydrofurfuryl disulfide).
Hope this helps!
Help with recent test results
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
According to recent research, updates to the gluten challenge are being implemented.
Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.
While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.
Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods. Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.
References:
https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/
And...
Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader
"In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine) following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al. While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!