knitty kitty

On 1/8/2025 at 9:39 AM, Lotte18 said:

Hi Matt,  So sorry you're having to suffer all this.  I'm just chiming in on your dairy question because the answers are often far from what we or our doctors assume.  For example, I thought I could go back to having dairy once my intestinal villi healed.  I was fine for about 8 months.  And then I wasn't.  Started having weird issues with maintaining my balance while walking.  Even my PCP who has celiac didn't relate it to dairy.  Had to have a second endoscopy with enzyme testing.  Sure enough my pancreas no longer produces enough Lactase to process lactose.  My GI just brushed it off as, "common for people with celiac."    I'd never seen or heard that before.  I should have pressed him on it.  Common for celiacs who are women?  Common for celiacs of a certain age group?  But I was so surprised I didn't say anything.  Maybe Scott has more information on celiac and pancreatic function.  At least I'm back to walking upright!  

Hi, how are you doing?

Have you been checked for nutritional deficiencies?  The pancreas uses lots of Thiamine to make digestive enzymes and insulin.  Deficiencies in Thiamine, or Vitamin D can affect the balance.

P. S. Interesting articles:

Proinflammatory cytokines inhibit thiamin uptake by human and mouse pancreatic acinar cells: involvement of transcriptional mechanism(s)

https://pmc.ncbi.nlm.nih.gov/articles/PMC8112188/

Histamine Intolerance Originates in the Gut

https://pmc.ncbi.nlm.nih.gov/articles/PMC8069563/

Non-responsive celiac disease may coincide with additional food intolerance/malabsorption, including histamine intolerance

https://pubmed.ncbi.nlm.nih.gov/33268003/

Histamine Intolerance—The More We Know the Less We Know. A Review

https://pmc.ncbi.nlm.nih.gov/articles/PMC8308327/

On 1/8/2025 at 2:34 AM, Deanne jones said:

Hi Matt, like you I lost almost 3stone over 2yrs, my symptoms were exactly as you describe . 

  I was eventually referred  to a consultant who has been treating me for reflective coeliac.  I’ve been taking(  Budenofalk 3mg )steroids for the past 9 mths  and the course is coming to an end shortly. I’ve gained 2 stone and feel so much better in myself. Im due an endoscopy at the end of the course of steroids so unable to say if my villi’s have returned or my digestive system has repaired. But like you I was besides myself with worry. 

Apparently the condition is quite unknown and the consultant at the hospital I attend has been in contact  with  Sheffield hospital who specialises in this condition.

I hope this helps, 

 

Deanne

Hi, how are you doing? 

Have you tried a low histamine diet?  I was wondering because you said you had refractory celiac.  Steroids will lower histamine, but I wondered if you were following a low histamine diet in addition.  Have you been checked for nutritional deficiencies?  

@SaiP,

I noticed that you are eating foods that are high in histamine.  Bananas, avocados, spinach, gluten, and tuna are high histamine foods or are histamine liberators.  Histamine is released by mast cells in the body as part of the autoimmune reaction to gluten.  High histamine foods add to that histamine burden, making clearing histamine difficult.   

Histamine is a helpful neurotransmitter, causing alertness.  We wake after sleep because our body produces histamine.  BUT, excess histamine causes insomnia.  

We need vitamins and minerals, like Thiamine, Pyridoxine, Cobalamine, Vitamin C, and magnessium, to help our body break down and clear out histamine.  

We need Thiamine and the other B vitamins to turn carbohydrates, like white rice, protein and fats into energy and fuel for the body.  The more carbohydrates you eat, the more thiamine is needed above normal.  More thiamine is needed when physically sick, or emotionally stressed.  Losing weight until skin and bones is a symptom of Thiamine deficiency.

White rice is stripped of nutrients like Thiamine, when the germ is removed to make it white.  Vitamins added to enriched rice can be lost if the rice is washed.  If you are increasing your rice consumption, you need to increase your thiamine.  The form Benfotiamine has been shown to promote intestinal healing.

Healthy fats like olive oil should be included in the diet.  Our body likes to use healthy fats as fuel.  

Do look into a low histamine gluten free diet.

How are you doing, @sadiec123?  Did you get through the holidays alright?   

Have you been checked for nutritional deficiencies?  Many newly diagnosed Celiacs  are low in Vitamin D and many of the B vitamins like thiamine.  Thiamin insufficiency can cause weight loss and loss of appetite (anorexia) as well as affect mood.   Benfotiamine has been shown to promote intestinal healing and improve mood.

I agree, @Sarah Marie, it's best to keep eating gluten and get on the doctor's cancellation list.  Some people have extreme symptoms when reintroducing gluten after a brief abstinence.  Be sure she consumes six slices of bread or gluten-y equivalent a day in the two weeks prior to the endoscopy.  There are different amounts of gluten in different products.  Chewy pizza crust and artisan breads have more gluten than cookies and cakes.

Keep us posted on your progress!

Those are links to articles on this site.  I don't do Instagram either.

https://www.celiac.com/celiac-disease/cross-reactivity-between-anti-gliadin-antibodies-and-proteins-in-spices-may-trigger-symptoms-in-some-people-with-celiac-disease-r5900/

And 

https://www.celiac.com/celiac-disease/beyond-gluten-exploring-lesser-known-triggers-and-cross-reactivities-for-celiac-patients-r6350/

Canker sores can be more frequent if deficient in zinc, Thiamin B1, Riboflavin B2, Pyridoxine B6, Cobalamine B12, Folate B9, iron and Vitamin D.  

Following a low histamine paleo diet helps heal.  Mast cells in our body make histamine and release it as a part of the inflammation process.  Foods that contain high histamine levels can make inflammation worse.  Mast cells get "itchy triggers" and can release histamine when exposed to some spices and foods.  The vitamins listed above are also required to clear histamine along with Vitamin C. 

Following a low histamine diet like @Mari and @Blue Roanand keeping a food journal like @Blue Roan does are excellent ways to travel on our Celiac journey.

@dlaino,

Which symptoms are getting worse for you?  

Which vitamins do you take?   Do you take Vitamin D?

Hello, @Lightingthunder2,

I understand how confusing Celiac can be, especially when one develops other health problems.

I developed Type Two Diabetes and was prescribed Metformin.  I started feeling weak and tired.  I searched for answers using my nutrition and microbiology education to find answers.  

I learned that Metformin can cause Thiamin Vitamin B1 deficiency.  Metformin blocks the thiamin transporters that allow thiamin to enter cells.  

Keep in mind that Celiac Disease causes poor absorption of all nutrients, vitamins and minerals that our bodies require daily to live.  Thiamin can be rapidly depleted because it cannot be stored for very long (3 - 21 days).  With Metformin blocking entry into cells and malabsorption from celiac disease, thiamine deficiency can set in quickly.  The early symptoms of thiamine insufficiency can be vague and easily be attributed to other things, like a bad day at work, and doctors can easily overlook the symptoms.  Doctors aren't well educated in nutritional deficiencies.  My doctors were clueless.  

I took thiamin in the form Benfotiamine and followed the Autoimmune Paleo diet (developed by Dr. Sarah Ballentyne, a Celiac herself).  Benfotiamine has been shown to promote intestinal healing.  The Paleo diet cuts out most high carbohydrate foods.  This helps me keep my blood glucose levels under control without Metformin or other medications.  Now, I do add in occasionally rice or potatoes.  I avoid most gluten free processed foods since they are not enriched with vitamins like gluten containing products and are filled with saturated fats.  I do not take any pharmaceuticals for high blood glucose.  I control my type two diabetes with diet, and take Benfotiamine.

Thiamine deficiency is found in both Type One and Type Two Diabetes.  Thiamin is not properly reabsorbed in the kidneys in both types.  Since thiamin is water soluble, it is lost easily in urine.  Type One Diabetes has a genetic component which involves thiamine transporters in cells not functioning properly due to faulty genetic information.  Type Two Diabetes may result as a consequence of thiamine insufficiency.  Ninety-eight percent of diabetics in both types are Thiamin deficient.  

Discuss with your doctor and Nutrutionist any dietary changes and supplementing with essential vitamins and minerals while you are healing.

Here are some articles I found helpful. 

Thiamine and diabetes: back to the future?

https://pmc.ncbi.nlm.nih.gov/articles/PMC8505293/

The potential role of thiamine (vitamin B1) in diabetic complications

https://pubmed.ncbi.nlm.nih.gov/18220605/

Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations

https://pubmed.ncbi.nlm.nih.gov/32528766/

Exploring the link between dietary thiamine and type 2 diabetes mellitus risk in US adults aged 45 years and older: Insights from a cross-sectional investigation

https://pubmed.ncbi.nlm.nih.gov/39642136/

Metformin Is a Substrate and Inhibitor of the Human Thiamine Transporter, THTR-2 (SLC19A3)

https://pubmed.ncbi.nlm.nih.gov/26528626/

Do you eat processed gluten free foods?

Welcome to the forum, @KCGirly,

In addition to side effects like rashes and gastrointestinal symptoms, Semaglutide is known to cause Thiamine Vitamin B1 deficiency.   Gastrointestinal Beriberi (a Thiamine deficiency disorder) causes nausea, vomiting, abdominal pain, diarrhea, constipation, and tachycardia.  

Consuming a diet high in carbohydrates (like during a gluten challenge) can make symptoms worse.  Thiamine is needed to convert carbs, fats, and proteins into energy and enzymes that keep us alive.  Without sufficient thiamine, our bodies store excess calories as fat.

Symptoms of thiamine deficiency can wax and wane depending on how much dietary thiamine is consumed.  If you eat a meal with lots of thiamine (meat and liver are good sources of dietary thiamine),  a twenty percent increase in dietary thiamine produces an eighty percent increase in brain activity and symptoms improve.  Symptoms can occur for years with subclinical thiamine deficiency.

A doctor can administer high dose thiamine intravenously, or over-the-counter thiamine supplements (Benfotiamine) can be taken.  Symptoms improve within a few hours to days with thiamine supplementation.  Thiamine is safe and nontoxic even in high doses.  No harm in trying thiamine supplementation, if only to rule it out.  Unfortunately, many doctors are not aware of thiamine deficiency caused by pharmaceuticals.  

Thiamine deficiency can affect antibody production and results in false negatives on Celiac testing.

Semaglutide can also cause Vitamin B12 deficiency and folate deficiency.  Anesthesia can also deplete B12.

Do keep us posted on your progress.

Foods tasting salty can be an indicator of diabetes, kidney failure, Sjogren's syndrome, thyroid problems, smoking, dehydration and zinc deficiency.  

Do you wear an N-95 mask left over from the pandemic when you handle flour?

Do you eat out in restaurants?

Do you take vitamins?

These articles are helpful.

@DayaInTheSun,

Have you been checked for nutritional deficiencies?  The gluten free diet can be low in the eight essential B vitamins.  Most Celiac are low in Vitamin D, which helps calm the immune system.  Thiamine (Benfotiamine) helps calm mast cells so they don't release histamine at the slightest provocation.  Taking a B Complex and Benfotiamine will help.  

P.S. Covid can deplete Thiamine stores.  Physical stress, like an infection or injury, as well as emotional stress, require more Thiamine.  

Hello, @Dora77,

Pancreatic elastase is a digestive enzyme that requires Thiamine Vitamin B 1 to be produced.  Thiamine is needed to make insulin, too.  Thiamine, Niacin B 3, and Pyridoxine B6 are needed to make digestive enzymes and turn carbohydrates, fats and proteins into energy for the body, and for repair and healing of the body.  The Gluten free diet can be low in the eight essential B vitamins.  Gluten free processed foods are not enriched with vitamins and minerals like their gluten containing counterparts.  Supplementing with the water soluble B vitamins can ensure you're absorbing sufficient amounts of B vitamins to keep the body healthy.  Benfotiamine is a form of thiamin that helps heal the digestive tract.  Benfotiamine and Vitamin D help to reduce inflammation and calm immune responses, so if you are accidentally exposed, your autoimmune response might not be so bad.

Have you been checked for nutritional deficiencies? 

Welcome to the forum, @LKMatchett,

Yes, I believe airborne particles carried from steam released during cooking can enter the body and make one ill, whether it's gluten from noodles boiling, or bread baking.  I know I get ill if I'm around shrimp or lobster boiling, too.  I have a crustacean allergy.  

I think distilleries have a condensation process during which heavier airborne particles like gluten are eliminated.  

Welcome to the forum, @Gill.brittany8,

Yes, the bloodwork is confusing.  

One has to be eating a sufficient amount of gluten (10 grams/day, about 5-6 slices of bread) in order for the antibody level to get high enough to be measured in the bloodstream.  If insufficient amounts of gluten are eaten, the the antibodies stay in the small intestines, hence the statement "tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet." 

The bloodwork reflects anemia.  People with anemia can have false negatives on tTg IgA tests because anemia interferes with antibody production.  Diabetes and Thiamine deficiency are other conditions that may result in false negatives.  Anemias, B12 deficiency, iron deficiency, Thiamine deficiency and gastritis are common in undiagnosed Celiac disease.    The DGP IgG antibody test should be given because your daughter is so young.  Many young people test positive on DGP IgG because their immune systems are not mature and don't produce IgA antibodies yet. 

Your daughter has several alleles (genes for Celiac disease).  

Your daughter needs to be checked for nutritional deficiencies.  Iron (ferritin) B12, Vitamin D, Thiamine and Vitamin A should be checked.  

Were any biopsies taken during the endoscopy?

Keep us posted on your progress.  

The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  

@Jack Common,

It's possible that your antibiotic for giardiasis has caused thiamine deficiency.  

https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/

And...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.  

Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  

Sorry about that link.  It was meant for a different post.  

Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.  

Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies.

A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.  

Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.  

Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy.

Keep us posted on your progress!

@ABP2025,

Here's some studies and articles that will help you learn more about thiamin and all... I will write more later.

https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/

And...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

and...

Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial

https://pubmed.ncbi.nlm.nih.gov/31746327/

Welcome to the forum, @Kiwifruit,

I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.  

On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.  

Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.  

Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.  

Best wishes on your journey!  Please keep us posted on your progress.

Welcome to the forum, @Debado,

Migraines at night can be caused by high levels of histamine.  Histamine Intolerance can cause physical symptoms like migraines.

Foods contain histamine.  Our bodies make histamine, an important neurotransmitter.  Our bodies naturally produce more histamine at night as part of our circadian rhythm, our sleep-wake cycles.  

Some foods like gluten and nuts contain high histamine themselves or trigger our bodies to produce more histamine.  A low histamine diet is helpful, cutting out high histamine foods and histamine-release triggering foods.  

Our bodies can breakdown a certain amount of histamine, but sometimes our bodies cannot keep up with the amount of histamine needing to be broken down, and can be overwhelmed by the amount of histamine resulting in Histamine Intolerance and health problems like migraines.  

Vitamins C, B12, Pyridoxine B6 and thiamin B1 help lower histamine levels.  Our bodies use these vitamins to make an enzyme DOA (diamond oxidase) that breaks down histamine.  DAO from beef or pork kidney is an over-the-counter supplement that can be taken.  

Riboflavin B2 is very helpful for relieving migraines.  

Have you been diagnosed with Celiac Disease or suspect you have it?  

Happy Holidays!

@ABP2025,

Have you thought about having a DNA test to check for known Celiac genes?   

I do hope you will make sure that you are getting sufficient gluten to provoke an autoimmune response strong enough that the antibodies can be measured in the blood.  See article below.

Celiac disease affects the absorption of nutrients,  including vitamins and minerals.  Your symptoms may be associated with thiamine deficiency.   Migraines and peripheral neuropathy, phimosis (yes, even this), and white spots on the brain are seen in thiamine deficiency.  Celiac disease disrupts the absorption of all the essential nutrients, but thiamine can be quickly depleted, in as little as three days.  Thiamine deficiency can occur even if blood tests show normal levels.  Thiamine deficiency can affect antibody production.