knitty kitty

@TerryinCO,

Are you taking a B Complex in addition to your B12?  B 12 needs the other B vitamins to function correctly.  Celiac disease and the damage to the intestines makes absorbing vitamins and minerals difficult.  Talk to your doctor and nutritionist about supplementing while you're healing.  

Are you on any medication for your Gerd?  Here is often caused by too little production of digestive juices.  Supplementing with a B Complex will help.  

Bless your heart!  That does make for a bumpy journey! 

The Takeda ALINAMIN EX Plus really works well for pain relief.  I was surprised at how well it works.  I can't recommend it enough.  I can't tolerate aspirin nor nsaids.  

Are you getting enough Omega Threes in your diet?  Healthy fats like olive oil help keep our discs and joints healthy and fluid. 

Welcome to the forum, @trsprecker,

I needed daily pain relief for three crushed vertebrae and found out that Thiamine, Pyridoxine, and Cobalamin (Vitamins B 1, B 6, and B12) have an analgesic effect.  

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

This is the one I order through that big online store... It's made in Japan.  I've been taking it for a couple of years now without problems.  

GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets

I don't do corn, nuts nor artificial sweeteners, either!   

Keep us posted on your progress!

Welcome to the forum, @TerryinCO,

Have you been checked for nutritional deficiencies?  Damage to the intestines like your doctor found affects the absorption of essential nutrients.  Supplementing with B Complex, Vitamin D, and minerals like magnesium help ensure you are absorbing vitamins your body needs to heal.  Weight loss is often seen in the malnutrition that accompanies Celiac Disease.  Weight loss, Barret's esophagus, and hypothyroidism are related to Thiamine Vitamin B1 insufficiency.  Talk to your doctor and nutritionist about supplementing with Thiamine in the form Benfotiamine and other vitamins and minerals.

Best wishes for your new journey with Celiac.  Keep us posted on your progress.

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.

Supplementing with the B Complex vitamins is beneficial while healing.  Have you talked to a nutritionist?

@Sharke,

The updated guidelines for a gluten challenge are to eat ten grams of gluten per day for two weeks minimum.  Lesser amounts of gluten (3 grams) don't provoke an immune response strong enough that the antibodies leave the gastrointestinal tract and get into the blood where they can be measured in tTg blood tests.  

Have no doubt that the antibodies made in the small intestine are doing damage there, even if you don't suffer severe symptoms, yet.

Did you react to barley prior to going gluten free?

Have you been checked for chronic autoimmune gastritis which is another autoimmune disease that sometimes occurs with Celiac Disease?

Have you been checked for nutritional deficiencies?  Thiamine deficiency (Gastrointestinal Beriberi) can cause constipation and/or diarrhea, abdominal pain, and weight loss.  

Thiamine Deficiency Disorders

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

@sillyyak52,

Count another one in the same boat!  My family has always been in denial.  They said my tummy aches were a ploy to miss school.  My parents passed from health problems associated with uncontrolled Celiac Disease (Abdominal Aortic Aneurysm and Glioblastoma brain tumor).  My sister still has her head buried in the sand.  

I agree with @Rogol72, try the consequences of untreated celiac disease shock treatment.  Sometimes people are just scared of having to change their comfortable lifestyle.

I take Life Extension brand Mega Benfotiamine, (250 mg with each of two meals) and Maxlife Natural TTFD-B1 Max Thiamine (100 mg).  

I try to take my Benfotiamine and TTFD before four pm, otherwise I have so much energy, it can be hard to fall asleep.  

Some people react to the Casein in dairy the same as to gluten, like me.  I avoid dairy avidly because I get ataxia so bad.

Some Celiac people produce tTg 6 antibodies in response to gluten or casein.  tTg 2 antibodies are what blood tests for Celiac measure.  tTg 6 antibodies are also found in Alzheimer's and Parkinson's diseases, contributing to ataxia.  Have you been checked for tTg 6 antibodies?  

P. S.  Can you share your B vitamin test results?

I agree that you were not eating sufficient gluten prior to your endoscopy. 

@Soleihey,

Do get checked for thiamine deficiency.  Blood tests for thiamine deficiency are not accurate.  You can have "normal" levels in the blood, but still be deficient because thiamine stores inside cells are depleted. 

Thiamine deficiency can cause ataxia, tremor, muscle twitching, leg weakness, constipation, and slurred speech.  I had these symptoms and more that did not resolve with a one a day type vitamin.  I needed high doses of Thiamine to correct the deficiency.  Thiamine is safe and nontoxic even in high doses.  Pregnancy can deplete thiamine stores.  

Interesting Reading:

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

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.