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, @glucel!
Are you still consuming dairy?
About half of people with Celiac Disease also react to dairy. Dairy products can make antibody levels rise.
More importantly, vitamin deficiencies occur after surgery. Anesthesia can precipitate a B 12 deficiency because nitrous oxide used in anesthesia can irrevocably bind with the B12 making it useless. Thiamine deficiency can be precipitated by surgery because of increased metabolic demands when ill.
Deficiencies in these vitamins can cause constipation and "senior moments".
Do talk to your doctor about checking for nutritional deficiencies as part of proper follow up care for Celiac patients. Supplementing with essential vitamins and minerals can boost your absorption of these nutrients. Most Celiacs are deficient in the B Complex vitamins, Vitamin D, and minerals like magnesium, iron, and zinc, all important in repairing and healing the body.
Keep us posted on your progress!
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Yes, I do. Handled carefully, the bags of flour should not be a problem.
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I think the cashier's job in the supermarket would be better than the fast food restaurant job.
You can always keep an M-95 mask in your pocket to use if you see someone purchasing sacks of flour in the grocery store.
The airborne gluten would be much higher in a restaurant where cooking makes gluten particles airborne. Stay clear of the bakery if the grocery store has one for the same reason.
Best wishes!
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I understand. You've every right to be worried. I'm very concerned, too. If she doesn't improve, I would suggest a visit to urgent care or the emergency room. Thiamine deficiency, if not corrected quickly can cause permanent damage, especially with neurological symptoms.
Doctors are not as knowledgeable about vitamin deficiencies as they need to be.
There's no harm in trying Thiamine if only to rule it out. I took supplements, Benfotiamine and Allithiamine (Tetrahydrofurfuryl Disulfide - TTFD), to correct my Thiamine deficiency. My story is in my blog, if you click my name, under activities.
Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/
And...
Thiamine deficiency disorders: a clinical perspective
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4 hours ago, kate g said:
still struggling to swallow, body aches, stomach and headaches...and now blurred vision....fatigued...
These are symptoms I had prior to diagnosis. I had become seriously malnourished. Unfortunately, my doctors didn't recognize nutritional deficiency symptoms, so I depended on my university studies in nutrition and microbiology.
Before taking any vitamin supplements, talk to your doctor and nutritionist about testing for nutritional deficiencies. Taking vitamin supplements beforehand will mask any deficiencies. Testing for nutritional deficiencies is part of proper follow up care for Celiac Disease.
Keep in mind, gluten free facsimile foods are not required to be enriched or fortified with vitamins like their gluten containing counterparts. Add to that malabsorption, and an increase metabolic demand while ill, so going on a gluten free diet, especially while having absorption problems, can result in nutritional deficiencies.
Do talk to your doctor soon about possible Thiamine deficiency. Dysphagia, trouble swallowing, fatigue, abdominal pain and blurred vision ares symptomatic of Thiamine deficiency, which can quickly worsen and lead to altered mental status, and is life threatening. I've experienced these symptoms myself.
Thiamine is one of eight essential B vitamins. We need all eight, but Thiamine is the first to run out. We can become depleted in as little as three days to three weeks.
A medical doctor can administer Thiamine intravenously. Thiamine is nontoxic and safe even in the high doses required to reverse Thiamine deficiency. I took over-the-counter Thiamine to correct my Thiamine deficiency because my doctors were undereducated about nutrition. I had health improvement within an hour. No harm, no foul to try it.
Here are some interesting studies...
Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9788281/
Association Between Vitamin Deficiencies and Ophthalmological Conditions
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10363387/
Adopting a low histamine autoimmune diet will help reduce antibodies and inflammation...
Efficacy of the Autoimmune Protocol Diet as Part of a Multi-disciplinary, Supported Lifestyle Intervention for Hashimoto’s Thyroiditis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592837/
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I was the same way when younger. Our bodies become adapted to pumping out anti-gluten antibodies regularly, but when dairy is added, the additional reaction can push our limits and symptoms worsen.
Our bodies may be able to keep up for a short time, but the malabsorption of nutrients catches up with us.
Digestive enzymes from the Pancreas, and bile from the gallbladder require lots of B Complex vitamins, especially Thiamine B1, which help us digest fats, carbohydrates and proteins. If we're low in vitamins, we can't make as much of the digestive enzymes and bile, so things don't get properly digested, allowing intestinal bacteria to ferment the undigested food, causing gas and bloating and Small Intestinal Bacterial Overgrowth (SIBO).
My grandmother had a Guernsey cow (A2 milk producer). As a child on rare visits, I'd get up at the crack of dawn to milk that cow with my grandmother. It was the only milk I liked and it didn't cause symptoms. So long ago, A2 milk wasn't on the market then...
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Malnutrition caused by Celiac Disease can affect reproductive health. Talk to your doctor and nutritionist about supplementing with essential vitamins and minerals. Newly diagnosed Celiacs often have clinical or subclinical deficiencies.
Low Thiamine Vitamin B1 can affect sperm formation. Thiamine needs the seven other water soluble B vitamins, Vitamin C, and minerals like magnesium and zinc to function properly, so a B Complex and trace mineral supplements are a good idea.
Low Vitamin D affects sperm motility. The three other fat soluble are important, too.
Do look into a low histamine Paleo diet, like the AIP diet, to improve health.
Keep us posted on your progress!
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On 9/13/2024 at 6:59 PM, moore.amy said:
no significant acute inflammation.
There's inflammation and there's Acute Inflammation which is way worse. Symptoms begin or worsen with acute inflammation.
What lead you to see a doctor if you weren't having gastrointestinal symptoms? Celiac Disease can cause over two hundred symptoms, not all of them are gastrointestinal symptoms.
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I found this article very interesting, especially section 5.2 in which milk and wheat are discussed as environmental triggers in Celiac Disease.
A Potential Link between Environmental Triggers and Autoimmunity
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Investigation into cow's milk protein and specifically Celiac Disease seem lacking, but cow's milk protein and other autoimmune diseases have been studied and there is a connection...
Google this...
Cow's milk protein "autoimmune" diseases. PubMed
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45 minutes ago, Wheatwacked said:
That's what fermented foods are for, the lactobacillus (probiotic) supplies us with lactose.
Lactose is the sugar/carbohydrate in dairy. I think you mean LactAse, the enzyme that breaks down LactOse in this quote.
Lactobacillus does not produce LactAse for us to use. Lactobacillus break down lactose for their own use.
The result of eating fermented pickles is that there is an increase in the lactobacillus population in the intestines. Lactobacillus are one of the good bacteria that get kicked out when SIBO (Small Intestinal Bacterial Overgrowth) occurs. SIBO can and does occur in Celiac Disease.
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Yes, it's that high.
Mucosal reactivity to cow's milk protein in coeliac disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/
Lactose Intolerance is where the villi in the small intestine are damaged and cannot make Lactase, the enzyme that digests the sugar in dairy, Lactose.
The protein in dairy, Casein, can stimulate the autoimmune response just like gluten. Casein and gluten both can cross link proteins that stimulate antibody production (antibodies to transglutaminase are used to diagnose Celiac, those tTg IgA blood tests).
Dairy products often have microbial transglutaminase added for texture. Microbial transglutaminase cross links proteins just like gluten and casein do, triggering the autoimmune response. Microbial transglutaminase acts the same as tissue transglutaminase which our bodies produce.
P.S. Just wanted to add, some people are genetically programmed to stop producing LactAse in adulthood and have lactose intolerance forever.
Others with lactose intolerance can consume dairy after their villi grow back and can produce LactAse again.
Others, like me, will always react to Casein as well as gluten. We can have lactose intolerance if our villi are damaged and cannot produce lactase, as well as a reaction to Casein.
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The foods that you are sensitive to may contain high histamine levels. Your body makes histamine in response to foods you are sensitive to.
Your body needs time to clear the build up of histamine from both high histamine foods and the high histamine levels your body makes in response to them.
Avoiding high histamine foods for a while is important while your body heals.
Antihistamines are not going to be able to clear the histamine if you keep eating high histamine foods.
Diamine Oxidase (DAO) supplements help reduce histamine in foods. Our bodies make DAO from Vitamins B12 Cobalamine, B6 Pyridoxine, Vitamin C and Thiamine B1.
DAO supplements are available over the counter.
You may want to consider DAO supplements and supplementing with Thiamine (Benfotiamine) and the other B Complex vitamins, and Vitamins D and C.
Histamine Intolerance—The More We Know the Less We Know. A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/
Diamine oxidase supplementation improves symptoms in patients with histamine intolerance
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Dairy will trigger the same reaction as gluten does in about fifty percent of Celiacs because Casein, the protein in dairy, resembles the protein Gluten. Dairy will provoke the same autoimmune reaction as gluten does, including damaging the villi in the intestines!
Damage to the villi causes malabsorption of vitamins and minerals. Absorption of all the vitamins and minerals are affected, but the water soluble B vitamins, especially Thiamine, are affected. We can run out of Thiamine in as little as three days to three weeks.
The Gallbladder, the Pancreas and the Thyroid all use large amounts of Thiamine Vitamin B1 to function. Thiamine is needed to turn fats, protein, and carbohydrates into energy for the body to function. Insufficient Thiamine can cause gastrointestinal symptoms like bloating, floaty stools, and oily stools.
Thiamine deficiency disorders can occur in organs like the Pancreas, Thyroid and Gallbladder, resulting in insufficient digestive enzymes and bile, and low Thyroid hormones.
Vitamin D is commonly low in Celiac. Vitamin D helps regulate the immune system. Getting your Vitamin D level up in the 80's will help immensely.
Talk to your doctor about supplementing with vitamins like Thiamine and the B Complex vitamins, Vitamin D and minerals like magnesium and calcium while you are healing.
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NCGS (Non Celiac Gluten Sensitivity) can be a precursor to Celiac Disease in people with positive Celiac genes.
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Welcome to the forum, @Jole,
Children often produce DGP IgG antibodies when so young. If TTG IgA antibody testing was done, false negatives could've been seen.
Insufficient gluten consumption prior to blood tests can also cause false negatives.
Genetic testing for Celiac Disease can help with diagnosis. Since Celiac Disease is an Autoimmune Disease, one has to have the genes to develop it. All first degree relatives should be tested as well.
Growth retardation, changes in sleep patterns and changes in mentality can be signs of nutritional deficiencies which develop in Celiac Disease.
Do consider further testing!
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Welcome to the forum, @Smitty1953,
While the positive blood tests and biopsy/endoscopy are the preferred method of diagnosis, genetic testing and improvement on a gluten-free diet are acceptable testing methods if ones health is endangered doing a gluten challenge.
Since Celiac Disease is a genetic autoimmune disease, one must have specific genes in order to potentially develop the disease. One does NOT have to endure a gluten challenge for Genetic Testing. Not all genetic combinations are known for celiac disease, but looking for the most common ones can help diagnosis.
I went gluten free before testing, but after reintroducing gluten I became so ill I couldn't complete the challenge. Genetic testing shows I have two genes for celiac disease. With improvement on a gluten free diet and positive genes, my doctors diagnosed Celiac Disease.
Best wishes
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Call your doctor that treats your diabetes about the Januvia and about being at your tolerance level for the gluten challenge. Encourage this doctor to get the appointment with the gastroenterologist moved up.
The increase in the dosage of Januvia may be causing side effects.
"JANUVIA may have other side effects, including stomach upset and diarrhea, swelling of the hands or legs, when JANUVIA is used with metformin and rosiglitazone (Avandia)."
https://www.januvia.com/possible-risks-and-side-effects/
Metformin is known to cause Thiamine deficiency. Gastrointestinal Beriberi causes symptoms like you describe. Nausea, vomiting, diarrhea/constipation, anxiety, and palpitations are all symptoms of Thiamine deficiency.
Talk to your doctor about supplementing with Thiamine and checking for other nutritional deficiencies.
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
Call your gastroenterologist and let them know you are at your limit on the gluten challenge. You are endangering your health if you continue. Request your appointment be moved up.
!!!Throw out the Gatorade Zero Sugar!!! The artificial sweetener in that ACESULFAME POTASSIUM is really bad. It messes with your body's ability to regulate glucose metabolism. It also messes with your intestinal bacteria, resulting in diarrhea and bloating. It also increases inflammation.
The artificial sweetener acesulfame potassium affects the gut microbiome and body weight gain in celiac disease-1 mice
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464538/
I hope you feel better!
Keep us posted on your progress!
- Beverage and GardeningForHealth
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I agree with @Scott Adams. It may have been something else.
Sensitivity to Sulfites can develop in Celiac Disease. Many of those scents in perfumes, air freshener, laundry detergent and dryer sheets contain Sulfites.
I've got Sulfite Hypersensitivity. I've reacted to perfumed things. Gluten is not the cause of everything.
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Yes, @itarachiu, taking antibiotics and probiotics together is rather useless. However, since Rifaximin promotes the good bacteria naturally in the intestines, boosting those with a probiotic containing good bacteria like Lactobacillis should still be beneficial.
Finishing the antibiotics first, then follow up with probiotics is a good plan, too.
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We are supposed to have beneficial bacteria in our intestines.
Rifaximin has been shown in early studies to promote the growth of beneficial intestinal bacteria. You may want to consider taking a probiotic and continue taking B Complex vitamins as Rifaximin can cause vitamin deficiencies.
So glad you are seeing improvement!
References:
Eubiotic properties of rifaximin: Disruption of the traditional concepts in gut microbiota modulation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5504364/
Systematic review with meta‐analysis: rifaximin is effective and safe for the treatment of small intestine bacterial overgrowth
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5299503/
And...
Look at the side effects and dosage...
https://www.mayoclinic.org/drugs-supplements/rifaximin-oral-route/side-effects/drg-20065817?p=1
And...
Try rotating antifungal herbal remedies....
Antifungal and Immunomodulatory Ingredients from Traditional Chinese Medicine
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I agree with @Wheatwacked. More nutritional factors need to be looked at in Celiac Disease.
Dr. Han only mentioned checking vitamin levels once in passing. Doctors need to acknowledge the importance of nutritional factors in Celiac Disease.
Not only does Vitamin D help regulate the immune system, other vitamins like Thiamine and the rest of the B vitamins are integral to the immune system responses.
Vitamin B1 Supports the Differentiation of T Cells through TGF-β Superfamily Production in Thymic Stromal Cells
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7452312/
B Vitamins and Their Role in Immune Regulation and Cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7693142/
Diet-mediated constitutive induction of novel IL-4+ ILC2 cells maintains intestinal homeostasis in mice
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The essential vitamins need to be taken all together. There's a balance. Just taking one vitamin or mineral can throw that balance out of whack.
Blood tests for serum vitamin levels are unreliable. You can have vitamin deficiency symptoms before a deficiency is detected in the bloodstream.
The proper way to treat some vitamin deficiencies is to administer high doses in conjunction with appropriate amounts of the rest of the essential nutrients.
Unfortunately, many doctors are not required to take sufficient nutritional education. Many don't recognize nutritional deficiency symptoms. Nevertheless, everyone should discuss supplementation with their doctor and nutritionist.
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Me, too, @RMJ! I was more curious as to what those vitamins were doing inside our bodies. We cannot live without them, but why? So I switched to microbiology and learned about how vitamins are used to make energy and enzymes that allow our bodies to function properly.
While undiagnosed, Celiac Disease causes malabsorption by damaging the villi that absorb nutrients. The Gluten Free diet can be low in essential nutrients, which increases the level of malnutrition.
The Autoimmune Protocol Diet has been shown to promote intestinal healing. So adopting the AIP diet can reduce inflammation, but those nutritional deficiencies that developed prior to diagnosis and even after diagnosis need to be addressed.
Damaged intestines will heal better and faster if there is sufficient nutrients available.
References:
Efficacy of the Autoimmune Protocol Diet for Inflammatory Bowel Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/mid/NIHMS889275/
Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/
Nutritional Status and Metabolism in Celiac Disease: Narrative Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10419423/
Prevalence and Impact of Malnutrition in Hospitalizations Among Celiac Diseases: A Nationwide Analysis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10524785/
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
Nutritional Considerations in Celiac Disease and Non-Celiac Gluten/Wheat Sensitivity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10058476/
The Gluten-Free Diet for Celiac Disease: Critical Insights to Better Understand Clinical Outcomes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10537989/
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks...
3 month retest
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
Were you taking supplements in the weeks before having your B12 measured? Taking supplements before testing for deficiencies can cause falsely high readings.
Weight gain or weight loss can be caused by low thiamine, needed to process fats, carbohydrates and proteins into energy for the body.
Low Thiamine and low magnesium can also cause constipation.
Interesting Reading:
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/