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, @Linedancegal,
No, you still have Celiac Disease. You just have been on a gluten free diet successfully for so long that your body's immune system isn't reacting strongly YET.
It can take many exposures consistently to get your immune system back to making the quantity of antibodies necessary for those typical symptoms.
Remember gluten challenges insist you eat ten grams of gluten daily for several weeks to produce the damage seen in endoscopy of small intestine and antibodies in the blood.
Don't be fooled by no reaction today. Don't think you can start eating gluten again. Every exposure will stimulate the immune system.
Hope this helps!
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Ask for an Erythrocyte Transketolase test to test for Thiamine deficiency. It's more accurate than a blood test for Thiamine.
The bloodstream is a transportation method. Vitamins absorbed from foods or supplements go into the bloodstream and can circulate for at least a couple of days before being absorbed by cells in organs and tissues. So, of course, a blood test would reflect high levels if you've been supplementing in the previous eight to twelve weeks. Most of the B vitamins cannot be stored for longer than eight to twelve weeks. You need to be off vitamin supplements for eight to twelve weeks before testing for deficiencies. But, again, blood tests do not reflect the stores inside cells in tissues where the B vitamins are actually utilized. The body will rob tissues of their vitamin stores and put them in the bloodstream to supply important organs like the brain and heart.
More than B12 and iron are needed to correct anemia. Riboflavin B2, Pyridoxine B6, Folate B9, and Thiamine B1. All the B vitamins are water soluble and easily lost. It's rare to be deficient in just one B vitamin. The eight B vitamins all need each other work properly. We need to supply all eight B vitamins every day. You can be eating nutritionally dense food sources, but if you are not digesting the food and absorbing the nutrients, they can't be much use.
We also need B vitamins to make and secrete digestive enzymes. Digestive enzymes are needed to break down fats and oils.
Many of the eight essential B vitamins can cause neuro symptoms when deficient.
Thiamine deficiency needs to be corrected as quickly as possible with high dose Thiamine. This can be administered by IV or by supplementing with over the counter Thiamine Hydrochloride, Allithiamine (Tetrahydrofurfuryl Disulfide TTFD), and Benfotiamine. Read my blog about my journey with Thiamine deficiency and permanent brain damage.
Keep us posted on your progress!
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Have you been boosting your absorption of essential nutrients by supplementing with vitamins and minerals? The anemia and B12 deficiency needs to be addressed. Adrenal insufficiency is linked to Thiamine deficiency. Which supplements are you taking?
A Gluten free diet can be nutritionally insufficient.
Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/
Nutritional Deficiencies in Celiac Disease: Current Perspectives
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703793/
The Gluten-Free Diet for Celiac Disease: Critical Insights to Better Understand Clinical Outcomes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10537989/
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Sorry for your loss.
Some chemotherapy drugs can cause Thiamine deficiency. Thiamine and the other B vitamins are essential to life and some are needed to fight cancer. High dose Thiamine has been shown to help fight cancer.
High Rate of Thiamine Deficiency among Inpatients with Cancer Referred for Psychiatric Consultation: Results of A Single Site Prevalence Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/
B Vitamins and Their Role in Immune Regulation and Cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7693142/
The Effects of Thiamine on Breast Cancer Cells
https://pubmed.ncbi.nlm.nih.gov/29914147/
Study on the correlation between B vitamins and breast cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9912611/
Getting sufficient nutrients from the gluten free diet and from supplementation can help keep us healthy so cancer doesn't get a chance.
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How long have you been on the gluten free contamination diet?
I found the Autoimmune Protocol Diet worked best for me. It allows time for healing before adding foods back in.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/
What was your tTg? What are your immediate symptoms? Did you eat the apple peel?
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Have you asked for a DNA test to look for Celiac Disease genes?
If you don't have any of the genes for Celiac, you may have something else like colitis or crohns.
Your two weeks gluten free before the endoscopy/biopsy and a low gluten diet in general would have affected your test results.
Anti-gluten antibodies (tTg IgA, DGP IgA, etc) are only present when gluten is consumed. A low gluten diet and going gluten free prior to testing will definitely affect test results.
Ten grams of gluten a day are required to produce sufficient antibodies in the bloodstream and damage on endoscopy. If a slice of bread has 2-3 grams of gluten, consumption of three to five slices every day for a minimum of two weeks would be necessary.
Hope this helps!
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Insufficient Thiamine B1 can cause unintended weight loss. The thyroid gland uses lots of Thiamine. A B Complex, Benfotiamine, and Vitamin D supplements should help. Malabsorption of essential vitamins and minerals occurs with intestinal damage. Supplementing with vitamins and minerals boosts your ability to absorb these.
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How are you doing?
I checked on the ingredients of those Aussie Bites.
Organic Rolled Oats, Organic Oat Flour, Organic Unsalted Butter, Organic Expeller Pressed Canola Oil, Organic Dried Apricots, Organic Sugar, Organic Cane and Invert Sugar, Organic Raisins, Organic Flax Seeds, Organic Honey, Organic Shredded Coconut, Organic Quinoa, Organic Chia Seeds, Sea Salt, Baking Soda, Organic Vanilla. Allergy Information: Contains Milk and Coconut. Produced on shared equipment that may contain Wheat, Soy, Eggs, Milk, Coconut, Peanuts and Tree Nuts.
Flax seeds and China seeds are difficult to digest. They are high in plant lectins and insoluble fiber. Not the best for high Marsh score damage.
I found it helpful in recovery to avoid all grains (oats included) and seeds for several months. This allows time for the intestinal lining to heal. Avoiding dairy altogether will help as well. Avoid Nightshades (tomatoes, potatoes, eggplant and peppers) as well. These contain glycoalkaloids which promote leaky gut syndrome.
Basically, avoid all processed foods. Fruit, veggies and meat are gluten free.
Glad you're being checked for vitamin and mineral deficiencies. Correcting Vitamin D deficiency can help lower inflammation and regulates the immune system. A B Complex will help ensure you are getting sufficient essential vitamins needed to heal the intestines. Minerals like calcium, potassium, and magnesium can help lower inflammation, too.
Hope this helps. Keep us posted on your results.
- Blue Roan, Scott Adams and Nicole Maree
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@RILEYW and @marjoryrw1
Consider having genetic tests done to see if you have any genes for Celiac Disease.
You do not have to be eating gluten for a genetic test for Celiac Disease.
Genes don't change. If you have a gene for Celiac disease, and improve on a gluten free diet, this can be a diagnosis of Celiac Disease.
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Welcome to the forum, @BunnyBrown!
Many people with Celiac Disease become deficient in vitamins and minerals even if following a strict gluten free diet for years.
Thiamine deficiency disorders can present with dysphagia, difficulty swallowing. I had developed nutritional deficiencies and experienced dysphagia. High doses of Thiamine are administered to correct it. Thiamine deficiency disorders present differently than Thiamine deficiency in Alcoholism, so my doctors didn't recognize my symptoms as a Thiamine deficiency disorder. Thiamine is safe and nontoxic even in high doses, so it doesn't hurt to try it. I took over-the-counter thiamine hydrochloride, benfotiamine and Allithiamine (Tetrahydrofurfuryl Disulfide) to correct it. My symptoms started improving within an hour. A B Complex and magnesium malate glycinate should be taken as well since all the B vitamins work with Thiamine.
References:
Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9788281/
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/
- cristiana and patty-maguire
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https://pubmed.ncbi.nlm.nih.gov/29555204/
Seems just the cows milk protein can stimulate tTg IgA antibody production even on a gluten free diet. Removal of cows milk protein stops the production of tTg IgA antibodies.
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There's the fecal test for gluten immunogenic peptides (GIP).
Biomarkers to Monitor Gluten-Free Diet Compliance in Celiac Patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5295090/
A multivitamin is not sufficient in people with poor absorption. More of the water soluble B vitamins are needed, especially if there's been diarrhea or constipation. Supplementing with Thiamine helps. Please be sure to read this article.
Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study
https://pubmed.ncbi.nlm.nih.gov/12195231/
Talk with a nutritionist or dietician who can explain a diet that includes plenty of essential vitamins and minerals.
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Welcome to the forum!
Antibody tests shouldn't be used to test for compliance to a gluten free diet.
Reliability of antitransglutaminase antibodies as predictors of gluten-free diet compliance in adult celiac disease
"Conclusions: In adult celiac disease patients on a GFD, IgA-tTG-ab are poor predictors of dietary transgressions. Their negativity is a falsely secure marker of strict diet compliance."
https://pubmed.ncbi.nlm.nih.gov/12809831/
Have you considered supplementing your son's diet with vitamins and minerals? This would be invaluable since your son doesn't seem to be eating a nutritionally dense diet.
Has your son been checked for nutritional deficiencies?
Constipation can be caused by deficiencies in Thiamine B1 and magnesium.
Thiamine has been shown to be helpful in Autism.
Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study
https://pubmed.ncbi.nlm.nih.gov/12195231/
The Rationale for Vitamin, Mineral, and Cofactor Treatment in the Precision Medical Care of Autism Spectrum Disorder
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9964499/
Relationship between Vitamin Deficiencies and Co-Occurring Symptoms in Autism Spectrum Disorder
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7279218/
Hope this helps!
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We call it a food/mood/poo'd journal. Keeping track of mood swings helped me track high histamine reactions to certain foods.
Good plan! Great advocating for your daughter!
Looking forward to hearing from you! Best wishes
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POTS and elevated liver enzymes are symptoms of Thiamine Deficiency Disorders.
Thiamine deficiency disorders: a clinical perspective
"Thiamine deficiency also causes depletion of ATP in the liver, which may result in elevated liver enzymes..."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
And...
https://www.hormonesmatter.com/thiamine-deficiency-causes-problems/
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Welcome to the forum, @NikkiRose96!
While only having one allele for Celiac may put you in a lower risk group for developing celiac disease, it also may put you at higher risk for ulcerative colitis.
Not diagnosing.
HLA-DQA1*05 Associates with Extensive Ulcerative Colitis at Diagnosis: An Observational Study in Children
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Welcome to the forum, @Lrgthrcl.
Get your daughter checked for nutritional deficiencies. Many of the symptoms you related are related to vitamin and mineral deficiencies due to malabsorption caused by Celiac Disease.
Talk to the doctors about testing for deficiencies before starting vitamin supplements on your own. Get testing done for more than just Vitamins D and B12. Ask for an ErythrocyteTransketolase test for Thiamine B 1 deficiency.
Doctors aren't familiar with nutritional deficiency symptoms and rarely recognize them. I studied Nutrition before earning a degree in Microbiology. I experienced the same symptoms on my journey to a Celiac diagnosis. I understand how your daughter feels so desperately out of control of her emotions. Our body and brain cannot function properly without a sufficient supply of essential vitamins. We cannot make vitamins and must absorb them from our diet. If there's poor digestion and poor absorption and poor food choices, our body quickly runs out of the eight essential B vitamins and other essential nutrients, and our body and brain start to malfunction.
Rashes can be signs of deficiencies in the B vitamins and fat soluble vitamins, especially Vitamins A and D. Dark circles under eyes can be caused by Cobalamine B12 deficiency. Flaking nails are a symptom of iron and B vitamin deficiencies. Cobalamine B12, Folate and iron deficiencies can cause anemia which can result in poor antibody production.
Abdominal pain, acid reflux, nausea and loose stools can be caused by deficiencies in Niacin, Pyridoxine, Riboflavin, and Thiamine, all needed to make and secrete digestive enzymes.
Recurring infections can be a symptom of Thiamine deficiency. Thiamine usage is increased in illness, physical and emotional stress. Headaches are linked to Thiamine deficiency. Thiamine and magnesium deficiencies are linked to muscle cramps.
Behavior changes can be caused by Thiamine, Niacin, Cobalamine B12, and Pyridoxine and Omega Three deficiencies. The symptoms overlap because these vitamins are important in making neurotransmitters and in brain function. Neurotransmitters are made in the intestines. If the intestines are damaged, as in Celiac, the neurotransmitters don't get produced.
Thiamine and Niacin deficiencies results in increasing anxiety and panic attacks, hypersensitivity and overload to stimulus, sensitivity to light, sound and touch. ADHD is connected to Thiamine deficiency. Emotional lability (not being able to control ones emotions, emotional outbursts, flying into a rage) are symptoms of Thiamine and Niacin deficiencies. Niacin deficiency causes increased irritability. Pyridoxine deficiency causes Obsessive Compulsive behaviors, impulses to follow rituals, superstitions and magical thinking, and impulses to self harm. Nutritional deficiencies need to be corrected as quickly as possible to prevent permanent damage.
As sick as your daughter is, and as urgently as she needs the nutritional deficiencies corrected, a gluten challenge for further testing for Celiac antibodies would do more damage. I suggest getting a DNA test to look for any known Celiac genes.
Talk to your doctors about correcting nutritional deficiencies as soon as possible.
Do keep us posted on your progress!
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Yes, eating gluten sporadically and not eating gluten for a week can impact your biopsy results.
You owe it to yourself to do the gluten challenge appropriately. Go all in so you will get unequivocal results.
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 Trialhttps://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! -
There's a higher risk for Celiac people to develop chronic urticaria. First generation antihistamines like hydroxyzine are helpful in reducing histamine levels.
Does urticaria risk increase in patients with celiac disease? A large population-based cohort study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896876/
Histamine release is part of the autoimmune reaction in Celiac Disease. We can also consume histamine in foods.
Histamine Intolerance Originates in the Gut
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/
Some intestinal bacteria can also secrete histamine. Reducing dietary histamine can lower histamine levels.
The dietary treatment of histamine intolerance reduces the abundance of some histamine-secreting bacteria of the gut microbiota in histamine intolerant women. A pilot study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9633985/
Yes, our menstrual cycle can influence our histamine levels, causing higher levels at mid-cycle.
Histamine metabolism during the menstrual cycle
https://pubmed.ncbi.nlm.nih.gov/973560/
Lowering dietary histamine, supplementing with Diamine Oxidase DAO, a digestive enzyme that breaks down histamine, and antihistamine medications help lower histamine levels.
Histamine Intolerance—The More We Know the Less We Know. A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/
Yes, I've had urticaria and dermatitis herpetiformis both.
Hope this helps!
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Have you thought about getting a DNA test? Celiac Disease is genetic. You must have at least one of the genes for celiac disease to develop. You don't have to be consuming gluten for a DNA test.
What is being done for your low iron? Low iron is common in newly diagnosed Celiacs.
In the early stages of celiac disease, intestinal damage can be patchy or beyond the reach of an endoscopy. Biopsy samples need to be examined under a microscope by someone familiar with changes due to Celiac Disease.
The amount of gluten eaten prior to blood tests can affect the results. Were you eating 6 -10 grams of gluten prior to testing? Sometimes people cut back on gluten before testing because of their uncomfortable symptoms, and get equivocal results.
It can be frustrating trying to get a diagnosis. But, do keep trying so you won't be stuck in that limbo land of wondering.
I was diagnosed by genetic test and improvement on a gluten free diet. I had diabetes, anemia and Thiamine deficiency, all of which affect anti gluten antibody production, and was seronegative. You do have positive antibodies. Ask your doctor for a genetic test. Be strong. It is a bumpy road to diagnosis, but we're here to cheer you on. Best wishes!
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Keep in mind that gluten free processed facsimile foods are not required to be enriched or fortified with vitamins and minerals. Gluten based foods are required to be enriched with vitamins and minerals lost during processing. So when you go gluten free, you have to buy your own vitamins.
Do you eat any vegetables? Veggies are an important source of fiber which helps move things along in the digestive tract. Not getting enough fiber in your diet can cause constipation.
Constipation is another symptom of Thiamine and magnesium deficiencies.
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@B1rdL0ver, welcome to the forum!
Minocycline is a tetracycline antibiotic that can interact with Thiamine Vitamin B1 in your body resulting in Thiamine deficiency.
Some acne can be caused by deficiencies in any of the eight essential B vitamins. Diets high in carbohydrates can induce a thiamine deficiency.
Thiamine deficiency symptoms cause nausea, dizziness, and digestive upsets (Gastrointestinal Beriberi).
An Erythrocyte Transketolase test to test for Thiamine deficiency is better than a test of Thiamine by blood level.
Subclinical or borderline Thiamine deficiency can occur for years.
Attached are some studies done about thiamine deficiency. See if any of your symptoms are similar.
Case Report: Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/
Vitamin B group levels and supplementations in dermatology
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10099312/
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
Hope this helps! Keep us posted on your progress!
Negative Test but I have All the Symptoms!
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Hello, @Hannah24
Have you had a DNA test done? Celiac Disease is genetic. You must have at least one gene to develop celiac disease. You don't have to be consuming gluten for a genetic test.
Anemia, diabetes and thiamine deficiency can cause false negatives. Some lucky people are seronegative, but still have celiac disease.
Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies. Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy. These same vitamins are needed to produce blood cells. Most undiagnosed Celiacs suffer from nutritional deficiencies.
The DNA test would be helpful.