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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Have you tried Basmati Rice? It's the type of rice that's well tolerated, least likely to provoke a reaction, easily digested.
I can't tolerate rice or grains, especially corn, but I found I can have basmati rice.
It should be near the other types of rice....short grain rice, brown rice and black rice.
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I'm confused now. Those are genes that code for Celiac.
Paste each line into Google.
HLA-DQA1 - rs2187668
HLA-DQB1 - rs7454108
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You may have a small amount of damage from Celiac Disease in your intestines, but Celiac Disease affects the whole body. The antibodies do damage not only in the intestines, but the antibodies get into the bloodstream and attack other organs and tissues.
Some Celiacs have problems with their thyroid because of the antibodies attacking. Some people get skin problems (dermatitis herpetiformis, acne, eczema). Some have problems breathing because of the antibody attack on the lungs. Some get achy joints because the antibodies attacking the joints cause inflammation. Some have neuropathy because the antibodies attack the nerves. Some develop ataxia because the antibodies attack the brain. Some develop diabetes or other pancreas problems because the antibodies attack the pancreas. The inflammation is throughout the body. If you can control your diet, removing anything inflammatory like high histamine foods, gluten, and dairy, then you can give the body a chance to heal, but due to the malabsorption, malnutrition follows, so supplementing with essential vitamins and minerals is necessary.
The Gluten Free Diet can be deficient in vitamins and minerals. Supplementing with vitamins and minerals boosts your ability to absorb them. With these essential nutrients, our bodies can repair the damage. I believe that if you take care of the Celiac Disease, you will improve the function of the pancreas.
The Paleo Diet is basically meat and vegetables and some fruit. Nothing processed, no grains, no dairy, no nightshades (peppers, potatoes, eggplant, and tomatoes). Choose low histamine foods. After a few weeks, you should feel much better. Then you can add in other foods as long as your body tolerates them.
I personally don't like antihistamines, but they've been helpful to others.
I like Passion Flower tea. Twinings has a nice one.
About the Paleo Diet...
AIP (Autoimmune Protocol) Diet: A Beginner's Guide
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
And...
https://www.thepaleomom.com/start-here/the-autoimmune-protocol/
An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/
Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/
Long-Term Effect of Gluten-Free Diets on Nutritional Status, Body Composition, and Associated Factors in Adult Saudi Females with Celiac Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9144408/
Micronutrient deficiencies are frequent in adult patients with and without celiac disease on a gluten-free diet, regardless of duration and adherence to the diet
https://pubmed.ncbi.nlm.nih.gov/36096056/
Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet
https://pubmed.ncbi.nlm.nih.gov/19154566/
Hope this helps!
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Anemia, diabetes and Thiamine deficiency can cause false negatives.
Has your daughter been checked for these?
And some of us rare ones are seronegative Celiac.
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You could be eating foods high in histamine. Processed foods are high in histamine.
Our bodies can make histamine. Plants and animals can make histamine, too. It's a useful neurotransmitter. Histamine release is what wakes us up in the morning. That cup of coffee? Causes histamine release. Insomnia? High histamine levels can keep us awake at night.
Histamine is released as part of the inflammation process. Anti-gluten antibodies not only attack gluten, but also structures in the membranes of the cells in our bodies that resemble certain segments of gluten. The antibodies attacking our own cells call in mast cells. Mast cells release histamine. Histamine causes inflammation and edema.
Our bodies can normally deal with a certain amount of histamine, but if more histamine is added in from foods and illness, our bodies can have a hard time coping.
High histamine foods include processed foods, fermented and aged foods, crustaceans, tomatoes and others.
Following a low histamine Paleo diet really helped me get my histamine down. Supplementing with essential vitamins and minerals was most helpful. Certain B vitamins (Thiamine, Pyridoxine, and Cobalamine B12), Vitamin C, and minerals like zinc, copper, and magnesium are needed to break down histamine.
Diamine Oxidase (DAO) is an enzyme which our bodies make with these vitamins that breaks down histamine. DAO supplements from beef and pork are available. Some people find antihistamines work for them.
Gastrointestinal Beriberi can develop as Thiamine Vitamin B1 stores become depleted. Gastrointestinal Beriberi symptoms (abdominal pain, gas and bloating, diarrhea) are similar to SIBO (Small Intestinal Bacterial Overgrowth). When we eat diets high in carbohydrates, our bodies require more Thiamin to turn the food into energy. Gluten free processed facsimile foods are not required to be enriched or fortified with vitamins and minerals. The Gluten free diet cuts out a major source of vitamins - the vitamins mandated to be added to gluten containing flours to replace the ones lost in processing. When you cut out gluten, you cut out those added vitamins, too. Add to that the damage done by celiac disease which affects our ability to absorb all vitamins and minerals from our poorly digested food. Supplementing with vitamins and minerals boosts our absorption and ensures our bodies have the vitamins needed to heal.
Poorly digested carbohydrates are fermented by Intestinal Bacterial releasing gas as a byproduct. Those Intestinal Bacterial can move into the Small intestine and grow quickly there. This SIBO can cause gastrointestinal symptoms, too.
Thiamin is a water soluble B vitamin. Thiamin makes life sustaining enzymes with other B vitamins. Thiamine stores can become depleted within as little as a week. Symptoms can wax and wane mysteriously depending on the amount of Thiamine is absorbed from daily dietary sources. Benfotiamine, a form of Thiamine, has been shown to promote healing in the intestines. Thiamine helps Mast cells not to release histamine. Thiamine helps break down histamine. Thiamine is utilized to make pancreatic enzymes, digestive enzymes, and insulin. Thiamine interacts with all the other B vitamins, so a B Complex and Benfotiamine are a great combination.
Talk to your nutritionist and doctor about supplementing with vitamins and minerals while healing.
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3 hours ago, Lori from Fl said:
Knitty kitty,thank you for sharing your experience with me! I do take a Women’s 50 + vitamin along with once a week 50000 vitamin D.My gastroenterologist also prescribed the creon enzyme to take 2 at every meal and 1 at every snack. My doctor said that I may have a slight stage of the celiac disease but most of my problems are the pancreatic insufficiency, and he also prescribes 4mg’s of nausea medication to help me when I’m feeling nauseous,but the pain and diarrhea keeps me down
"A slight stage of Celiac Disease" sounds a lot like "being a little bit pregnant."
Were biopsies taken to check for Celiac Disease microscopically when you had your endoscopy?
Malabsorption occurs in both celiac disease and pancreatic insufficiency. Fat malabsorption occurs, so we can become low in fat soluble vitamins like Vitamins D and A. Vitamin A is important in dry eyes and Sjogren's Syndrome. Smaller doses of Vitamin D every day improves its absorption more than once a week large doses.
It's great you're taking a multivitamin, but it wouldn't hurt to take a B Complex to boost absorption and replete stores. The B vitamins are water soluble.
I had nutritional deficiencies because I had such poor absorption for so long. I suffered from pain, chronic fatigue, anxiety, depression, and diarrhea. I was taking a multivitamin every day, but it wasn't enough to meet the increased demands when one is ill, is not digesting food well, and experiencing diarrhea. I had symptoms of nutritional deficiencies.
I had developed Gastrointestinal Beriberi, a form of Thiamine deficiency in the gastrointestinal tract. The pancreas uses lots of Thiamine as well. Supplementing with the B vitamins, Vitamin C, Vitamins D and A, and minerals like magnesium,potassium, and calcium were very beneficial.
I'm attaching studies done. I hope you'll take the time to compare your symptoms with these.
Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/
Effect of thiamin deficiency on pancreatic acinar cell function
https://pubmed.ncbi.nlm.nih.gov/6180623/
Vitamin Nutritional Status in Patients with Pancreatic Cancer: A Narrative Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11084158/
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/
A randomized controlled trial of omega-3 fatty acids in dry eye syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874521/
Omega-3 and omega-6 fatty acids in primary Sjögren's syndrome: clinical meaning and association with inflammation
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I've found that taking Flaxseed oil supplements help with my dry eye symptoms and Sjogren's Syndrome.
Omega Threes and Omega Sizes are not absorbed well from our diet in Celiac Disease. Omega Threes and Sixes are very important in eye health as they keep the eyes from drying out.
Flaxseed oil, Sunflower seed oil, and Oil of Evening Primrose supplements help immensely.
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Welcome to the forum, @Brenda F.,
I've had insomnia. I take Passion Flower extract. Passion Flower lowers histamine levels. Histamine is released as part of the inflammation due to Celiac Disease. Lowering the histamine level with Passion Flower allows for sleep without feeling groggy in the morning.
Tryptophan, a form of Niacin Vitamin B 3, also helps promote sleep.
The eight essential B vitamins work better when taken all together. Just taking one or two B vitamins can unbalance the others. Try taking a B Complex supplement in addition to the B12 and Riboflavin B 2.
Benfotiamine, a form of Thiamine Vitamin B1, is helpful in healing the digestive tract.
Talk to your doctor and nutritionist about supplementing with vitamins and minerals while you are healing.
Hope this helps!
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Welcome to the forum, @Greentea34,
Was the DGP IgG test run? It's just as reliable as the tTg IgA when there's IgA insufficiency and in children and young adults.
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Welcome to the forum, @Lori from Fl,
Watermelon has a laxative effect and lemon is a diuretic.
I prefer warm clove tea with meals. Clove has beneficial properties, like lowering inflammation.
Try to avoid processed gluten free facsimile foods until you are feeling better. Concentrate on meat and vegetables, a Paleo Diet, for several weeks, then try adding in other foods. I followed the Autoimmune Protocol Diet and felt better within three weeks.
Malabsorption of vitamins and minerals is a concern. The eight essential B vitamins are water soluble and easily lost with diarrhea. Talk to your doctor and nutritionist about supplementing with vitamins to boost your absorption.
Deficiencies in some of the B vitamins, like Thiamine B1, can result in pancreatic enzyme insufficiency. I took high dose Thiamine, a B Complex and magnesium which helped resolve my digestive issues.
Hope this helps!
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Since you are worried about the damage done to your intestines already, you could talk to your doctor about having an endoscopy and biopsy.
As you've been gluten free already, an endoscopy now might not show typical "gold standard" damage caused by Celiac Disease since the intestines have started healing while on a gluten free diet.
A gluten challenge would provoke an autoimmune response typical of celiac disease. However, symptoms may become more pronounced with the reintroduction of gluten.
Yes, dapsone should be discontinued before the gluten challenge. Dapsone's immunosuppressive effects will affect the test results.
Best wishes.
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Different types of flours are used for different types of breads, cakes, and pasta. Some types of flour contain different amounts of gluten.
Your husband would do better getting a proper diagnosis by an endoscopy with biopsies after a gluten challenge (a diet high in gluten - 10 grams a day) by a gastroenterologist, along with blood antibody tests.
Best wishes.
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@TDK welcome to the forum!
Increased lymphocytes can be a result of Thiamine deficiency. Thiamine is Vitamin B1, an essential water soluble vitamin that works with the other B vitamins. Thiamine is the vitamin that can be stored for the shortest period of time. Low levels of Thiamine can increase lymphocytic penetration.
Have you discussed with your doctor and nutritionist about supplementing with vitamins and minerals while healing on the gluten free diet? Supplementing with vitamins boosts our ability to absorb them.
Best wishes.
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High carbohydrate diets contribute to gut dysbiosis.
When we consume diets that are heavy in carbohydrates, excess carbohydrates don't get thoroughly digested. The bacteria in our guts ferment the carbs (resulting in gas and bloating). This can allow carbohydrate loving bacteria to out-populate the beneficial bacteria in our guts, resulting in dysbiosis. Add to that high fructose corn syrup, used as sweeteners in many carbohydrates, which forms a matrix which can be used by colonic bacteria to climb into the small intestine and colonize there.
High carbohydrate diets require additional thiamine to process the high carbohydrate load. Additional Thiamine is needed to keep those intestinal bacteria controlled. Thiamine is also needed to calm mast cells so less histamine is released.
Hiding in Plain Sight: Modern Thiamine Deficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
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Histamine plays a big role in gut dysbiosis. Zonulin is a downstream effect of histamine and inflammation.
Food Intolerance: The Role of Histamine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8469513/
Food, gut barrier dysfunction, and related diseases: A new target for future individualized disease prevention and management
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10084985/
P.S. Ask for an Erythrocyte Transketolase test which is more accurate than blood level tests.
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Have you talked to your doctors about supplementing with essential vitamins and minerals?
Several of the B vitamins, if low, can cause neuropathy.... Cobalamine B12, Niacin B 3, Pyridoxine B 6 and Thiamine B1.
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Hello, @James47,
I found supplementing with essential vitamins and minerals improved my health. The gluten free diet can be low in some nutrients. Taking vitamins improves absorption.
Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review
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Sequences of proteins in corn resemble sequences of proteins in gluten. Antigluten antibodies hone in on those sequences no matter the source. Sometimes, we develop antibodies against other protein sequences in corn as well.
Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820067/
The Prevalence of Anti-Zein Antibodies: A Comparative Study between Celiac Disease and Irritable Bowel Syndrome
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Welcome to the forum!
I get dermatitis herpetiformis, too. Staying away from foods high in Iodine will help with the dermatitis herpetiformis. Iodine in foods is known to make the dermatitis herpetiformis blisters worse. Try eliminating foods high in Iodine like dairy products, iodized salt, seafood, crustaceans, and kelp. No sushi. 😿
This has helped my dermatitis herpetiformis immensely.
Hope this helps you, too!
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I found this article very interesting. Section 4.2 discusses how gluten affects intestinal permeability.
Food, gut barrier dysfunction, and related diseases: A new target for future individualized disease prevention and management
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Gut dysbiosis can be caused by consuming a diet high in carbohydrates. Carbohydrate fermenting bacteria can push out more beneficial bacteria leading to SIBO, leaky gut and nutritional deficiencies in the B vitamins, especially in Thiamine. Thiamine is the B vitamin that we can run out of very quickly. Thiamine is needed to keep intestinal bacteria from overgrowth. In Thiamine deficiency, mitochondria become dysfunctional and begin to shut down. There's a thiamine deficiency shut down switch on our DNA strand which when triggered turns on the switch for autoimmune diseases stored in our DNA. Fascinating article is in my blog.
Thiamine deficiency has a connection to thyroid problems. Thiamine has been shown to improve fatigue in CFS/myalgic encephalomyelitis.
https://pubmed.ncbi.nlm.nih.gov/33210299/
Supplementing with essential nutrients is important because the gluten free diet can be deficient.
Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease
https://pubmed.ncbi.nlm.nih.gov/23198728/
Thiamine deficiency: Hiding in Plain Sight
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review
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I found following the Autoimmune Protocol Diet the best thing for me. The AIP diet has you remove all the foods from ones diet that can be irritating to the gastrointestinal tract. Eating those non-irritating foods for several weeks allows the intestines to heal, then other foods are slowly reintroduced. Find baseline foods that your body can tolerate, allow healing time, then add in other foods slowly to make sure there's not a reaction.
I also chose low histamine foods. Some foods contain more histamine than others. Histamine is produced by the body when there's inflammation. So high histamine foods and high histamine from inflammation can overwhelm our body and make us sick. Eating low histamine foods allows time for the body to clear that histamine, heal the intestines and lower inflammation. No eating out. No processed packaged foods. Restaurant foods and processed foods are high histamine, too.
The AIP diet recommends Bone Broth and Fermented Foods (like sauerkraut and kefir, but these are very high in histamine, so I avoided them). I also avoid nightshades (tomatoes, potatoes, peppers and eggplant) because they cause leaky gut syndrome.
I also took vitamins and minerals because the gluten free diet can be low in essential nutrients. A B Complex, Benfotiamine, minerals like calcium, magnesium and zinc are important. Benfotiamine Thiamine Vitamin B1 is especially helpful in healing the intestinal system.
The AIP diet cuts out many carbohydrates. This starves out the SIBO bacteria that causes a big bloated belly.
Sounds really restricted and severe, I know, but I figure six weeks on the AIP diet is better than six weeks recovery from major surgery. The mental shift to thinking "this food is my medicine" is helpful.
Hope this helps!
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
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Welcome to the forum, @Royalred.
If you're referring to tTg IgA, the test used to look for antigluten antibodies, then recent test results which are the nearly same as when diagnosed would indicate continued gluten consumption, resulting in inflammation due to the antibodies attacking the body in the autoimmune response of Celiac Disease.
As a general rule of thumb, the higher the tTg IgA antibody levels, the more severe the damage to the intestines.
She really needs to take the gluten free diet seriously. Down the road, there's serious health consequences if the gluten free diet isn't followed. It's preventable damage. Symptoms get worse as one ages and as nutritional deficiencies arise due to malabsorption.
Hope this helps!
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Welcome to the forum!
Newly diagnosed are usually low in B vitamins. Fatigue can be caused by being low in some of the B vitamins. The B vitamins are water soluble, so you may be inadvertently flushing them out of your system by drinking "tons" of water.
Athletes and people who exercise frequently have higher requirements for Thiamine Vitamin B1.
The effects of endurance training and thiamine supplementation on anti-fatigue during exercise
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/
A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/
Thiamine deficiency disorders: a clinical perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/
Thiamine helps recover from Covid.
Evaluation of thiamine as adjunctive therapy in COVID-19 critically ill patients: a two-center propensity score matched study
Genetic Testing for DQ2.5, DQ2.2, DQ7.5, DQ8?! Provider HELP!
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
@Confusedcelic,
Have you done the anti-gluten antibody testing?
Were the results borderline? High? Low?
Endoscopy?
Nutritional deficiencies?
Other autoimmune diseases?
Current symptoms?