Refractory or super sensitive?

[jeema]

@Bindi the reason I asked about the antibody levels is because if they remain elevated after going on a gluten free diet then I think that typically indicates that there's still ongoing accidental gluten consumption.  Do you know what the trend in your levels have been since you started the diet?

[Bindi]

When I was diagnosed my TTG levels were 306, they've since been consistently falling and the last results they shared with me they were at 66 which is much better but still too high. This last lot of bloods I havnt seen but the specialist said they were no good and is sending my biopsies to be checked for refractory sprue because they've ruled out contamination. I don't eat anything I havnt prepared myself, have my own toaster, oven trays, condiments etc and don't eat food from a packet unless it's got the gluten free seal of approval.

 

 

[knitty kitty]

Would you tell us what you do eat?  

I had a problem with high histamine foods when I first started eating gluten free.  Perhaps we can help point out problematic foods.  Do you keep a food journal?

[Bindi]

Chicken, fish, beef, venison fruit and veges. Rice, gluten-free pastas, quinoa, gluten-free toast, crackers and chips. All my herbs are home grown and dried myself unless I've bought certified gluten free and I make all my sauces and stuff from scratch.

[knitty kitty]

Impressive!  I wish I had a green thumb!  

I followed a Paleo diet, the Autoimmune Protocol diet.  It cuts out all grains and processed foods made with grains for a few weeks.  I felt great improvement during that time.  I didn't eat grains again for a few months because I kept feeling better.   

Gluten is a lectin, a carbohydrate storage molecule that is hard to digest.  Other plants like rice and quinoa have their own lectins that are hard to digest.  Lectins can keep the intestines irritated, and histamine levels high.

Consider cutting these out and see if you feel better.  Feed your tummy like you would a small child or kitten.  Small, easily to digest meals close together.   Try it over the weekend and let us know the results!

[glucel]

On 10/25/2024 at 2:10 AM, knitty kitty said:

Impressive!  I wish I had a green thumb!  

I followed a Paleo diet, the Autoimmune Protocol diet.  It cuts out all grains and processed foods made with grains for a few weeks.  I felt great improvement during that time.  I didn't eat grains again for a few months because I kept feeling better.   

Gluten is a lectin, a carbohydrate storage molecule that is hard to digest.  Other plants like rice and quinoa have their own lectins that are hard to digest.  Lectins can keep the intestines irritated, and histamine levels high.

Consider cutting these out and see if you feel better.  Feed your tummy like you would a small child or kitten.  Small, easily to digest meals close together.   Try it over the weekend and let us know the results!

Depending on which source you research sprouting or fermentation can reduce lectins. I sprout rice, buckwheat and quinoa. However, I admit that gas and intestinal inflammation still plague me after 5 1/2 mo gluten-free. I have been resisting but I may try the aip diet at some point.

[knitty kitty]

Using a pressure cooker will break down Lectins.  Long cooking times as in using a crock pot will also reduce Lectin content.  

However, having tried both, going lectin free for a few weeks is like a vacation for my digestive system. 

I do hope you give the AIP diet a try.  I understand that changing ones diet takes a lot of mental readjustment which is difficult, but it's really worth the effort for long-term health.  

P.S.  Once your digestive tract is healed up, you should be able to add beans and rice back into your diet gradually.

Edited November 14 by knitty kitty
Added post script

[glucel]

20 hours ago, knitty kitty said:

Using a pressure cooker will break down Lectins.  Long cooking times as in using a crock pot will also reduce Lectin content.  

However, having tried both, going lectin free for a few weeks is like a vacation for my digestive system. 

I do hope you give the AIP diet a try.  I understand that changing ones diet takes a lot of mental readjustment which is difficult, but it's really worth the effort for long-term health.  

P.S.  Once your digestive tract is healed up, you should be able to add beans and rice back into your diet gradually.

I was checking aip diet and discovered that aspirin is prohibited. I definitely can understand why that is but my cardio dr says to stay on it. So aip is done before I even get started.

[trents]

4 hours ago, glucel said:

I was checking aip diet and discovered that aspirin is prohibited. I definitely can understand why that is but my cardio dr says to stay on it. So aip is done before I even get started.

Not being able to implement all elements of a discipline does not necessarily mean going through with the rest of it will not benefit you.

[glucel]

1 hour ago, trents said:

Not being able to implement all elements of a discipline does not necessarily mean going through with the rest of it will not benefit you.

That's interesting because I think that the lousy 81 mg irritates my gut. I'm sensitive to drugs in general and blood thinners are all the same to me so aspirin necessary evil. As they say, better to be a live chicken than a dead duck. 

[trents]

What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about alternatives to aspirin. 

[glucel]

56 minutes ago, trents said:

What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about alternatives to aspirin. 

I don't react the same way to all of them but do react badly to many of them where others may not. I also have a touch of hypochondria so when the labs come back too high or makes me anxious. I am dismayed but not really surprised that I may be in the small group of people to suffer a particular side effect. I was originally on warfirin. I think that was the one where I had trouble with vitamin k numbers and or was anemic with low hemoglobin, red blood cells etc. 

My blood pressure drops to very low numbers after taking something as simple as turmeric for a few weeks. My diastolic had touched 50 one day before I finally figured out that the herb was the problem. No intention to go for 40 so never looked back.

I wanted to try benfothiamine but one of the listed side effects is bradycardia and other stuff that I am not going to challenge esp since I have had and still have to a lesser degree heart rhythm problems. 

[Wheatwacked]

The paleo diet is based on the idea that the human body evolved to consume a balanced ratio of omega-6 and omega-3 fatty acids, and that the modern diet is out of balance. A healthy ratio of omega-6 to omega-3 is 1:1–4:1, while the modern diet is closer to 20:1–40:1. The paleo diet aims to restore this balance.

[knitty kitty]

@glucel,

I agree with @trents.  You can still do the AIP diet while taking aspirin.  

I'm one of those very sensitive to pharmaceuticals and have gotten side affects from simple aspirin. 

Cardiac conduction abnormalities and atrial arrhythmias associated with salicylate toxicity

https://pubmed.ncbi.nlm.nih.gov/3952006/

Another part of the problem is that those drugs, aspirin and warfarin, as well as others, can cause nutritional deficiencies.  Pharmaceuticals can affect the absorption and the excretion of essential vitamins, (especially the eight B vitamins) and minerals.  

Potential Drug–Nutrient Interactions of 45 Vitamins, Minerals, Trace Elements, and Associated Dietary Compounds with Acetylsalicylic Acid and Warfarin—A Review of the Literature

https://pmc.ncbi.nlm.nih.gov/articles/PMC11013948/

 

Aspirin causes a higher rate of excretion of Thiamine Vitamin B1.  Thiamine deficiency can cause tachycardia, bradycardia, and other heart problems.  Other vitamins and minerals, like magnesium, are affected, too.  Thiamine needs magnesium to make life sustaining enzymes.  Without sufficient Thiamine and magnesium and other essential nutrients our health can deteriorate over time.  The clinical symptoms of Thiamine deficiency are subtle, can easily be contributed to other causes, and go undiagnosed because few doctors recognize Thiamine deficiency disorders.

Thiamine deficiency disorders: a clinical perspective

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

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/

Celiac Disease causes malabsorption of vitamins and minerals.  Supplementing with essential vitamins and minerals can boost absorption.  

Our bodies cannot make vitamins and minerals.  We must get them from our diet.  The Gluten free diet can be low in Thiamine and the other B vitamins.  Gluten free processed foods are not required to be enriched nor fortified with vitamins and minerals like their gluten containing counterparts.

You would be better off supplementing with essential vitamins and minerals than taking herbal remedies. 

Turmeric is known to lower blood pressure.  If you already have low blood pressure, taking turmeric would lower it further.

Curcumin/turmeric supplementation could improve blood pressure and endothelial function: A grade-assessed systematic review and dose-response meta-analysis of randomized controlled trials

https://pubmed.ncbi.nlm.nih.gov/38220376/

I've taken Benfotiamine for ten years without any side effects, just better health.

Other References:

Association of vitamin B1 with cardiovascular diseases, all-cause and cardiovascular mortality in US adults

https://pmc.ncbi.nlm.nih.gov/articles/PMC10502219/

Prevalence of Low Plasma Vitamin B1 in the Stroke Population Admitted to Acute Inpatient Rehabilitation

https://pmc.ncbi.nlm.nih.gov/articles/PMC7230706/

Bradycardia in thiamin deficiency and the role of glyoxylate

https://pubmed.ncbi.nlm.nih.gov/859046/

Aspirin/furosemide:  Thiamine deficiency, vitamin C deficiency and nutritional deficiency: 2 case reports

https://pmc.ncbi.nlm.nih.gov/articles/PMC9023734/

Hypomagnesemia and cardiovascular system

https://pmc.ncbi.nlm.nih.gov/articles/PMC2464251/

Atypical presentation of a forgotten disease: refractory hypotension in beriberi (thiamine deficiency)

https://pubmed.ncbi.nlm.nih.gov/31285553/