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, 2024 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/

[Levi]

On 10/21/2024 at 3:36 PM, Wheatwacked said:

Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years.

I have taken D2 50K oral capsules once weekly for 7 years consecutively due to a dangerously low deficiency level of 17. It took 3 whole years before I reached D level 34, followed by higher D levels up to low 70s. Two or three times throughout the following 4 yrs my labs would show slight high TSH (hypothyroidism).
Is it possible that the last 4 of the 7 consecutive years of D2 50K which gradually increased my D levels to 60s & 70s is causing current labs of high TSH, even though for at least the last 4 months I have reduced my D2 50K intake to half dosage, every other week vs. weekly? 

[Levi]

On 10/21/2024 at 3:36 PM, Wheatwacked said:

Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years.

I have taken D2 50K oral capsules once weekly for 7 years consecutively due to a dangerously low deficiency level of 17. It took 3 whole years before I reached D level 34, followed by higher D levels up to low 70s. Two or three times throughout the following 4 yrs my labs would show slight high TSH (hypothyroidism).
Is it possible that the last 4 of the 7 consecutive years of D2 50K which gradually increased my D levels to 60s & 70s is causing current labs of high TSH, even though for at least the last 4 months I have reduced my D2 50K intake to half dosage, every other week vs. weekly? 
 

[Levi]

On 10/21/2024 at 3:36 PM, Wheatwacked said:

Dave McCarthy, MD, said medical research on the high prevalence of vitamin D deficiency motivated him to introduce the findings into his family practice, and his patients have had a substantial reduction in influenza and infections.

“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, whose family practice is affiliated with The Memorial Hospital of Belleville, Ill.

“There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. Elevations in blood pressure now require many fewer medications,” he said.

What is the correlation in taking supplemental Magnesium with D? 

I can attest to Dr. McCarthy when it comes to influenza. In all 7 full years that I took extremely high weekly dose D2 50K only once did I become ill with flu like symptoms. At the time I became ill I was sharing residence with a sibling, 3 children, and 1 additional adult - a full house that was almost daily trafficked by other children and adults. Total 7 years, other than contracting Covid twice at 22 months apart, when it comes to flu illness I was practically immune. 

[Levi]

On 10/20/2024 at 3:39 AM, Bindi said:

I was first diagnosed with celiac disease nearly 14 months ago, going gluten free has made no difference for me and have now also lost 20kg. Had biopsies 3 months ago, showed ongoing damage, increased lymphocytes, villous atrophy and chronic inflammation. Repeat bloodwork I've been told doesn't look good although I've not been told what that means and the biopsies are being rechecked for refractory sprue and I've also been called in for a contrast ct scan. Hubby left back in Feb so I'm on my own with my daughter an struggling working through this journey on my own. I guess I was hoping to hear from any of you who have a similar story to mine, id love to hear how you are doing and what has helped you?

In your whole posts the red flag raised is “villous atrophy,” this is serious as it is the villi that holds the nutrients until they are absorbed into the cells of the body… the focus should be on healing of the villi while maintaining gluten free diet. I’m sure there is a Dr’s and Specialist section on this forum that can assist you with more information. 

 

In our Prayers with GOD for you and your daughter. LORD GOD send YOUR Holy Angels to Protect and Provide for Your children and All those involved and affected by All they are enduring, that All their Spiritual and temporal needs are met according to THY Most Perfect and HOLY will O LORD 🙏😇 

 

[knitty kitty]

@Levi,

How are you doing?  Sorry I missed your posts.  

How's your thyroid?  Did your Vitamin D stabilize?  Do you have long hauler syndrome after Covid?

Consider switching to Vitamin D 3, the natural form of Vitamin D.  Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form.  Also, Thiamine is needed to active Vitamin D.  

Hypothyroidism can be caused by Thiamine deficiency.  The thyroid is an organ that uses lots of thiamine.  sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism.

We need more Thiamine when we're sick with an infection (like Covid) or injured.  We need more Thiamine when we're physically active.  We need more Thiamine when we're emotionally stressed or worried.  Our brain uses the more Thiamine just thinking than our muscles do while running a marathon.  Thiamine is extremely important in fighting infections.  Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms.  

Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing.  Damaged villi need thiamine to grow back.  

Be sure to take a magnesium supplement, too.  Thiamine and magnesium make life sustaining enzymes together.  You also need magnesium to keep calcium in the bones.  The thyroid regulates calcium.  A wonky thyroid can lead to reduced bone density.  

Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease.

Namaste