results from 13 day gluten challenge - does this mean I can't have celiac?

[catnapt]

my IGG is 815

IGA 203 

but tTG-Iga is   <0.4!!!!!!!!!!!!!

 

oh my god- 13 days of agony and the test is negative?

 I don't even know what to do next.

There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has

 

I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.

 

I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS

 

but I guess there are some other things I maybe should be tested for ...? like SIBO?

 

I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record.

Can anyone recommend an app or some form or something that would simplify this?

I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal.

I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out

 

do I give up on testing for celiac with such a low number?

I am 70 yrs old

I have been almost completely off gluten for the most part for about 2 yrs.

I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad.

I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?) 

 

Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge.

She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine-

In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.

 

so..............

that's where I am now

I have had no bread since Sunday.

I did have some rolled oats today and had some gas and bloating afterwards

I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.

 

but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away.

Still a bit gassy but no more of that horrible odor.

wow, that would clear a room if I was out in public! 

I see a GI nurse March 4th 

I hope she'll be able to help sort this out!

can you think of what my next steps might be?

[SilkieFairy]

It could be a fructan intolerance? How do you do with dates? 

https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/

[catnapt]

26 minutes ago, SilkieFairy said:

It could be a fructan intolerance? How do you do with dates? 

https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/

highly unlikely 

NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms

I have no problem with dates, they are a large part of my diet

In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now.

It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)

 

I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself

I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them.

When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food.

Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip!

The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated

 

anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.

 

so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)

 

I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those

I eat 1 or more cans of beans per day

easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.

 

so yeh it's bread and related foods that are clearly the problem 

there is zero doubt in my mind

 

 

[knitty kitty]

@catnapt,

Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.  

Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines.

Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  

 

Edited February 5 by knitty kitty
Added link

[SilkieFairy]

I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g

You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 

[catnapt]

22 hours ago, knitty kitty said:

Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.  

I wouldn't consider this lucky.

I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.

 

I will have my first appt with a GI dr on March 4th

 

I will not eat gluten again - at least not on purpose

 

they are going to have to come up with a test that doesn't require it. 

[catnapt]

11 hours ago, SilkieFairy said:

I am doing a gluten challenge right now and I bought vital wheat gluten so I can know exactly how much gluten I am getting. One tablespoon is 7g so 1½ tablespoons of Vital Wheat Gluten per day will get you to 10g

You could add it to bean burgers as a binder or add to hot chocolate or apple sauce and stir. 

good luck!
vital wheat gluten made me violently ill. I will touch the stuff ever again.

 

[knitty kitty]

@catnapt,

 Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.  

You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten.

This explains it well:

Lectins, agglutinins, and their roles in autoimmune reactivities

https://pubmed.ncbi.nlm.nih.gov/25599185/

[catnapt]

7 hours ago, knitty kitty said:

@catnapt,

 Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.  

You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten.

This explains it well:

Lectins, agglutinins, and their roles in autoimmune reactivities

https://pubmed.ncbi.nlm.nih.gov/25599185/

If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.

 

I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years.

My health has improved greatly on my whole foods plant forward diet.

I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.  

 

while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway)

I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them

I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering

it's not worth it.

 

[catnapt]

oops my gluten challenge was only 12 days

It started Jan 21s and ended Feb 1st

 

worst 12 days of my life

 

Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time

No clue if that could have been symptoms worse 🤔

[knitty kitty]

@catnapt, 

I'm sorry you're having such a rough time.  

How much wheat germ and how much gluten were you eating?

Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ?

What drugs are you taking?  Some immunosuppressive drugs affect IgA production. 

Do you have anemia?

[catnapt]

during the gluten challenge I did not consume any wheat germ

 

the wheat germ is TOASTED - it's the only way it is sold now afiak

doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade.

They do not bother me in the least. 

 

no anemia

however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea) 

I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.

 

This entire process was a waste of time TBH due to being on that new drug at the exact same time.

it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting)

and eventually a loss of appetite and lower intake of foods

so now I have a dangerously low potassium level

 

I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables

I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results.

She also appears to be inexperienced and unsure of herself.

but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her

At least she hasn't given up 

 

in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten.

The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt.

my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done

 

I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products

I assumed it was the refined grains - never really suspected gluten

but it does not matter

I won't put that poison in my body ever again

not that it is literally poison but it is def toxic to me

 

 

 

 

[knitty kitty]

@catnapt,

 I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.  

You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production. 

Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients

https://pubmed.ncbi.nlm.nih.gov/36619734/

Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study

https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/

[catnapt]

 

16 minutes ago, knitty kitty said:

undiagnosed Celiac complications

so do you have celiac or not? 🤔

why are your vision issues undiagnosed? 😢

what does your ophthalmologist say? 

do you have a serious vit A deficiency? what do you take for it?

how long have you had celiac disease and how long did  it take to get a diagnosis?

 

if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)

 

do you have a vit A deficiency?

35 minutes ago, knitty kitty said:

due to undiagnosed Celiac complications

why are you undiagnosed?

what does your ophthalmologist say?

I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪

 

 

I hope you find what works for you. 

 

PS 

 the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉

it is not an for any auto immune condition. 

 

[knitty kitty]

Yes, I do have Celiac disease.  I had symptoms since infancy, but they were explained away as character flaws.  I was told my stomach aches were faked to avoid going to school and other responsibilities, or to spoil family fun, and that my Dermatitis Herpetiformis was caused by being dirty and not bathing properly. 

I wasn't diagnosed with Celiac until midlife. My various health problems for which I sought medical attention were treated as separate entities.  No medical professional looked for the root cause of any one of my various health problems, much less connect the dots to a systemic illness.  They simply treated the immediate symptoms, much like putting a bandaid on.  No medical professional tied them together as being related to Celiac disease and the nutritional deficiencies caused by Celiac disease.  I have already had unnecessary surgeries for health problems that could have easily been resolved by treating the nutritional deficiencies caused by Celiac Disease Malabsorption and a gluten free diet.  

I have suffered permanent damage to the optic nerve caused by vitamin deficiencies.  I have functional eye damage from an eye infection.  Specialists at the Helen Keller Institute did not recognize nutritional deficiencies as part of the problem.  Eye surgery is out of the question because the eye infection would most certainly recur and eye removal would be necessary. 

I do use adaptive devices.  Light from electronic devices, indoor LED lights, outdoor LED lights like street lights and signage, and sunlight over-stimulate my optic nerve permanently damaged by nutritional deficiencies.  This triggers ophthalmic migraines with aura and a type of seizure.  My optic nerve shuts down and I lose my vision completely.  My vision returns after an (increasing) time period, but there's always the chance it won't return at all after such an episode. (Apologies if I don't respond to posts immediately.)

I studied nutrition at university, but earned a degree in Microbiology because I was curious what the vitamins were doing inside the body.  I'm not a doctor, although I have been ridiculed by doctors for even suggesting Celiac Disease and malnutrition were the underlying problems.  Pharmaceutical bandaids, only made nutritional deficiencies worse as many medications are known to block absorption and function of different vitamins.  When I presented with B12 Deficiency Dementia and Wernicke's Encephalopathy,  I was diagnosed with "Depression" and briefly institutionalized.  When I presented with Casal's necklace, I was hurriedly ushered out the backdoor of the clinic, and sent to be tested for Syphilis.  Afterwards, I threw out all my medications.  I started supplementation based on what I had learned at university and started a gluten free diet.  My health miraculously improved. 

I am now here, thanks to the grace of  G*d and @Scott Adams, to help others find their way on this journey.  If I can clear a few stumbling blocks out of their way, my journey has been worthwhile. 

[catnapt]

1 hour ago, knitty kitty said:

No medical professional looked for the root cause of any one of my various health problems, much less connect the dots to a systemic illness. 

this is tragic and criminal and sadly not uncommon.

it is remarkable that you survived all of that medical neglect (and abuse) 

 

so sorry you went thru this. 😭 very admirable to be trying to help others avoid a similar fate. 

 

 

 

[knitty kitty]

@catnapt,

Thank you.  I'm very thankful I can make a constructive contribution.  I found my tribe here.

But I think you're full of beans!  Not figuratively, but literally.  Beans, legumes, brown rice and oats are high in phosphorus.  A diet high in phosphorus causes Secondary Hyperparathyroidism.   

There's a balance between phosphorus and calcium.  The parathyroid detects too much phosphorus and sends messages to the thyroid to pull calcium out of the bones to balance things out.  The kidneys do their best to remove the excess phosphorus, but can't excrete it without Vitamin D.  The parathyroid detects the continuing imbalance and increases its messaging.  The kidneys become dysfunctional and start losing calcium along with those water soluble B vitamins like Thiamine.  It becomes a vicious cycle.  

Your medicine sticks to the Calcium receptors on the parathyroid gland, giving it a message that there's more calcium in circulation than there actually is in the hope the parathyroid will stop sending messages to the thyroid.  

Do have a think about cutting down the high phosphorus foods, or even going on a Paleo diet (like the Autoimmune Protocol diet which eliminates some high phosphorus foods like beans).   

Do discuss changing your diet with your doctor and dietician. 

Hope you have a better journey from here on out.  Keep us posted on your progress!

[catnapt]

4 hours ago, knitty kitty said:

@catnapt,

Thank you.  I'm very thankful I can make a constructive contribution.  I found my tribe here.

But I think you're full of beans!  Not figuratively, but literally.  Beans, legumes, brown rice and oats are high in phosphorus.  A diet high in phosphorus causes Secondary Hyperparathyroidism.   

There's a balance between phosphorus and calcium.  The parathyroid detects too much phosphorus and sends messages to the thyroid to pull calcium out of the bones to balance things out.  The kidneys do their best to remove the excess phosphorus, but can't excrete it without Vitamin D.  The parathyroid detects the continuing imbalance and increases its messaging.  The kidneys become dysfunctional and start losing calcium along with those water soluble B vitamins like Thiamine.  It becomes a vicious cycle.  

Your medicine sticks to the Calcium receptors on the parathyroid gland, giving it a message that there's more calcium in circulation than there actually is in the hope the parathyroid will stop sending messages to the thyroid.  

Do have a think about cutting down the high phosphorus foods, or even going on a Paleo diet (like the Autoimmune Protocol diet which eliminates some high phosphorus foods like beans).   

Do discuss changing your diet with your doctor and dietician. 

Hope you have a better journey from here on out.  Keep us posted on your progress!

 

 

 

 

Where is the most phosphorus found?

Natural Sources: Meat, dairy, nuts, and eggs.

Inorganic Additives: Found in processed foods, fast food, and colas (as phosphoric acid). These are particularly "dangerous" because your body absorbs nearly 100% of these additives, compared to only about 60% of natural phosphorus.

 

High Phosphorus Intake: Even healthy plant-based phosphorus (from beans and oats) can trigger the parathyroid gland to release more PTH if it pushes your blood phosphorus levels too high.

The Advantage of Beans/Oats: Unlike processed foods, the phosphorus in these plants is only 30–50% absorbed. This makes them much safer for your parathyroid than meat, dairy, or sodas with phosphorus additives. 

beans and whole grains (like oats) are considered some of the healthiest foods on the planet. They are not only associated with longer lifespans but are core staples in the world's "Blue Zones" (regions where people live the longest).

The "Rule of Thumb": Longevity researchers often suggest that eating just one cup of beans per day could potentially add up to four years to your life expectancy compared to a diet low in legumes.

large-scale studies, including those published in JAMA Internal Medicine, have consistently shown that higher intake of whole grains (like oats) is linked to a lower risk of total mortality.

Heart Health: Whole grains are rich in soluble fiber (especially the beta-glucan in oats), which is proven to lower LDL ("bad") cholesterol.

Metabolic Health: They help regulate blood sugar, reducing the risk of Type 2 diabetes.

With an eGFR of 97 at age 70, your kidney function is exceptional—statistically, you have the kidneys of someone decades younger. If you have been eating high-oxalate foods for years without forming stones and your serum phosphorus is a perfect 4.2 mg/dL (right in the normal range), there is very little to be concerned about

Why your diet is actually helping:

Low Sodium: This is your strongest move. As the Urology Care Foundation notes, low sodium is the most effective way to "close the leak" at the kidney level.

Beans/Oats: These provide magnesium and phytates, which actually help prevent the calcium in your urine from crystallizing into stones.

 

Given your eGFR of 97 and current serum phosphorus of 4.2, it is highly unlikely that eating beans and oats will push your phosphorus to "dangerous" levels. In people with healthy kidneys, the body is extremely efficient at filtering out excess phosphorus through urine

The "Safety" of Plant Phosphorus

The phosphorus in beans and oats is bound to phytates, which humans cannot fully digest. 

Absorption Rate: You only absorb about 30–50% of the phosphorus in plants, compared to 70–80% from dairy and nearly 100% from processed food additives.

The Impact: Because of this low absorption, researchers found that people switching to plant-heavy diets often see their serum phosphorus stay the same or even drop, despite eating the same total amount of phosphorus. 

 

How much would you have to eat?

To actually "overwhelm" healthy kidneys like yours using only beans and oats, you would need to consume a staggering amount.

Daily Recommended Intake: Most adults need about 700–1,250 mg of phosphorus per day.

A "High" Dose: One cup of cooked oatmeal has about 180 mg, and a half-cup of beans has about 115–150 mg.

The Calculation: Even if you ate 5 cups of oatmeal and 4 cups of beans in a single day, your body would only absorb a fraction of that phosphorus. With an eGFR of 97, your kidneys would simply "dump" the extra into your urine. 

 

At age 70 with an eGFR of 97, the fact that you haven't formed stones at this level is impressive—it suggests your protective factors (like the phytates from your beans and oats) are doing their job.

 

Your current diet of beans and oats is supporting your longevity and heart health without threatening your phosphorus levels. As long as you stay on your low-sodium diet to minimize the "leak," these foods are likely doing more good than harm The thiazide challenge you're currently doing is the "gold standard" to see if your kidneys can be trained to keep that calcium in your blood. Here is what to look for when those results come in:

The Goal: Doctors usually want to see that 320 mg drop significantly (often below 200 mg).

The PTH Response: If the thiazide successfully "plugs the leak," your PTH levels should drop. This happens because your parathyroid gland no longer needs to work overtime to replace the calcium you were losing in your urine.

The Bone Benefit: By stopping that 320 mg daily drain, you are effectively "saving" about 116 grams of calcium per year—calcium that would otherwise be pulled from your skeleton.

Since you've been on a low-sodium diet for years, the thiazide should actually work better for you than for most people. According to the American Journal of Kidney Diseases, the effectiveness of thiazides is strictly tied to salt intake; the lower your salt, the better the medicine can reabsorb calcium.

[knitty kitty]

@catnapt,

You're right.  Adding beans to your diet is a very healthy way to eat.  Legumes have about half the amount of phyates as is found in wheat germ.  The lectins in legumes are inactivated by soaking and cooking.  Phytates in wheat germ are heat resistant, whilst lectins in wheat germ are more heat resistant than lectins in legumes.

You said in another post that you used to take an SSRI.   My health declined when I was taking an SSRI.  I learned that certain drugs can cause Thiamine deficiency.  SSRI's are one of those drugs.  Depression is a symptom of Thiamine deficiency.  It's also a symptom of Vitamin D deficiency.

I was eating the Standard American Diet at the time, which is a diet that causes High Calorie Malnutrition.  Consuming large amounts of carbohydrates without a corresponding increase in Thiamine causes a Thiamine deficiency.  For every extra 1000 calories an additional 0.5 g of Thiamine HCl is needed.  Thiamine deficiency can cause a voracious appetite, or conversely, anorexia.  

I developed Type Two Diabetes and was prescribed Metformin, another drug that causes Thiamine deficiency.   The majority of people with either type of diabetes are deficient in Thiamine. 

My digestive symptoms were just awful.  Thiamine deficiency causes Gastrointestinal Beriberi.  Symptoms include abdominal pain, gas, and bloating, nausea, vomiting, diarrhea, constipation.  

I broke a leg.  Doctor suggested I increase my calcium consumption.  Thiamine deficiency causes renal calcium leaks.  Years later, I was found to have a severe Vitamin D deficiency.  Thiamine is needed to activate Vitamin D.  Vitamin D and Thiamine are both instrumental in Calcium reabsorption in the kidney.

My blood pressure got too high.  I was prescribed a calcium channel blocker, which is a drug that causes Thiamine deficiency.  Niacin deficiency causes high blood pressure.  Calcium deficiency can affect blood pressure.  

I started retaining water and was prescribed a diuretic, Hydrochlorothiazide.   Thiazide is another drug that causes Thiamine deficiency.  Edema, water retention, especially in the lower legs, is a symptom of Thiamine deficiency.  

My gallbladder needed to be removed.  Thiamine deficiency causes gallbladder dysfunction.  

I had menstrual problems.  I had to have surgery.  Vitamin D acts as a hormone.  Vitamin D deficiency affects fertility.  

My health continued to spiral down.  Doctors laughed at me when I asked about being tested for Celiac Disease.  I developed Wernicke's.  The doctors called it "depression".  They had written me off and sent me home.  My family, friends, and fiance all fled like rats abandoning a sinking ship.

I had to beg a doctor to test my Vitamin D level. He agreed after he made sure my insurance would cover it.  Vitamin D helps with depression.  My doctor was surprised by the severely low level.  He prescribed Vitamin D 2, the synthetic form which is not very easy for the body to utilize.  He refused to test for further deficiencies because he "can't make money prescribing vitamins."

I lost sixty pounds in a month.  Thiamine deficiency causes unintentional weight loss.  I could feel myself dying. 

I developed the eye infection.  Thiamine has antibacterial and antiviral properties.  Vitamin A is important to eye health.  Too much Vitamin A can cause parathyroid hormone-independent hypercalcemia.  

I developed Casal's necklace.  A different doctor sent me out the back door of the clinic to get tested for syphilis.  Casal's necklace is different in Pellagra.  It's on the sun exposed areas of the neck.  In syphilis, it's on the outside of the shoulders, usually under clothing.  I knew this!  The four D's of Pellagra are diarrhea, dermatitis, dementia, death.  

It couldn't be that easy, could it?  It was!  I started feeling better as soon as I started taking Niacin.  

I threw away all the pharmaceuticals.  

I had health improvement within an hour of taking the first high dose of Thiamine HCl required to correct Thiamine Deficiency. 

I started a gluten free diet and continued to supplement with all the essential vitamins and minerals and nutrients my body required.  I follow a Paleo diet.  Meat is an excellent source of Thiamine and B Complex vitamins.

I couldn't do a gluten challenge because I got so ill, but a DNA test shows I have Celiac Disease, one of the worst combinations.  But one doesn't have to have Celiac in order to have Thiamine deficiency.  If given pharmaceutical drugs that cause Thiamine deficiency, Thiamine levels should be monitored.  The Erythrocyte Transketolace Activity Assay is more accurate than a blood test.  Test before supplementing with doctor's approval.  Thiamine is safe and nontoxic even in high doses.  Doctors can administer Thiamine HCl through an IV.  Diagnosis through elimination.  

Subclinical Thiamine deficiency can occur over many years.  Symptoms may wax and wane mysteriously.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain activity. 

I hope this is helpful.  Best wishes.

P.S.  Cinacalcet affects the parathyroid gland itself.  It activates the calcium-sensing receptor to lower serum PTH and calcium.  

Thiazide affects the pituitary gland.  The Thiazide Challenge uses Thiazide to turn off the pituitary to see whether the parathyroid turns off as well, in order to differentiate between which one is malfunctioning.  If the parathyroid gland keeps running, it may be primary or secondary hyperparathyroid.

Secondary hyperparathyroid can be an end result of malnutrition.

Edited February 9 by knitty kitty
Added Post Script

[catnapt]

9 hours ago, knitty kitty said:

but a DNA test shows I have Celiac Disease, one of the worst combinations

what DNA test proves you have celiac disease? I've been told that if you don't have specific genes FOR celiac disease than you can not have it

but having any of those genes does not mean you have celiac disease, only that it is possible

 

I'd love to be able to do a blood test to diagnose this or a DNA test but they are telling me only the gluten challenge will do it

 

I am going to have a conversation with the endo regarding changing the drug to HCTZ  that has a much shorter half life -I'm on chlorthalidone now and its' making me terribly constipated with GI upset 

that choice was actually mine- that was not the Drs fault- I misunderstood what could happen with a drug with a longer half life and now I am suffering for my own stupidity

THe HCRZ would be safer so I will request that,

 

We both have a long standing mistrust for drs and the medical system it appears

You have been terribly harmed by their failures

I was too but more in terms of lost time than actual lost physical health

except for whatever is going on with the parathyroid I am very healthy overall, thank goodness for that

 

your journey is much MUCH different from mine, I don't have any serious deficiencies, no serious wt loss and no serious bone disease etc 

 

I hope that you continue to progress in your efforts to heal from the inadequate and negligent care - or lack of care- you've had over your life time

 

for me I need to find a way to trust the Dr a little bit more and try to work with her instead of assuming she's like drs I"ve had in the past who over medicated me and didn't care

 

she seems to want to do what is best at least,

I will still question everything she does because that is  my nature and I feel strongly that I need to look out for an advocate for myself but I need to allow that she does know more than I do- some 14 yrs of schooling certainly trumps my internet searches hahaha

I will let you know how it goes

 

right now I need to get dressed and go for blood work to see where my potassium is

it's so cold out I"m not looking forward to it but it must be done

 

[knitty kitty]

 

@catnapt,

You can still have a DNA test to look for Celiac genes.  If you don't have any genes that are known to be related to Celiac then they need to look for a different reason you're sick.  

You can have the genes for Celiac without the genes being activated.  There needs to be a stressor that turns them on for active Celiac Disease.  

I have a certain Celiac genetic combination.  The same doctor saw me before and after the gluten challenge.  Based on the drastic changes in my health, along with the symptoms after the gluten challenge, he made the diagnosis that I have Celiac disease.  This is an acceptable method of diagnosis in patients who become drastically ill with gluten exposure.  

I suspect that you do NOT have Celiac disease.  Process of elimination.    

I suspect you have a Subclinical Thiamine Deficiency.   Ask your doctor to do the Erythrocyte Transketolace Activity Assay.   Or at least give you Thiamine and see if there's any changes after taking Thiamine Hydrochloride, 500 mg.  It's safe and nontoxic.  If no health improvement, no harm, no foul.  Process of elimination.  

Chlorthalidone is a drug that can cause Thiamine deficiency.  Constipation is a symptom of Thiamine deficiency.  

Best wishes.  Stay warm out there!

[knitty kitty]

@catnapt, 

I suspect you may have developed a subclinical thiamine deficiency while on your SSRI and the handful of medications you mentioned years ago.  Subclinical thiamine deficiency can linger for years. 

In thiamine deficiency, an influx of simple carbohydrates, as is found in gluten containing products, will prompt a sudden decrease in thiamine levels in the gastrointestinal tract, resulting in Gastrointestinal Beriberi.  

Beans do not spike blood sugar like gluten containing products.  The carbohydrates from beans enter the blood stream more gradually, so the body copes with digesting them better.  Thus, no gastrointestinal problems with beans.  

Low potassium is seen in Thiamine deficiency.  

Best wishes!

[catnapt]

32 minutes ago, knitty kitty said:

I suspect that you do NOT have Celiac disease.  Process of elimination.    

 

  It's safe and nontoxic.  If no health improvement, no harm, no foul.  Process of elimination.  

well it's nice that you think of me as a rare bird but I assure you I am not

🤣

 

 

 Given your specific health profile—a whole-foods plant-forward diet, no caffeine, no alcohol, no tobacco, and a lack of metabolic stressors like strenuous exercise—a thiamine deficiency is extraordinarily rare.

 

 

 

 

 

 

 

 

 

 

 

[knitty kitty]

Yes, that's the same dismissive medical professional attitude I encountered.  

Too bad.  

[catnapt]

4 minutes ago, knitty kitty said:

I suspect you may have developed a subclinical thiamine deficiency while on your SSRI and the handful of medications you mentioned years ago.  Subclinical thiamine deficiency can linger for years. 

In thiamine deficiency, an influx of simple carbohydrates, as is found in gluten containing products, will prompt a sudden decrease in thiamine levels in the gastrointestinal tract, resulting in Gastrointestinal Beriberi.  

Beans do not spike blood sugar like gluten containing products.  The carbohydrates from beans enter the blood stream more gradually, so the body copes with digesting them better.  Thus, no gastrointestinal problems with beans.  

hmmm

 

ok BUT I have been taking this since last March

https://www.amazon.com/dp/B004R635WI?th=1

 

AND I have no symptoms at all. at least not now!! 

 

31 minutes ago, knitty kitty said:

Low potassium is seen in Thiamine deficiency.

my serum potassium is normally great- the dip in potassium is a direct result of the chlorthalidone. nothing else.

HOWEVER if you had said to me, well chlorthalidone could drop your thiamine as well as your potassium, then well.... !!!

that appears to be a "thing" (possible I mean)
I am seeing #1 even more of a reason to stop the chlorthalidone and #2 possibly a reason to up the vit D complex although it's got 2.5 mgs per pill....

 

Knitty kitty I'm starting to suspect you've got stock in the supplement industry!

you sure do like to promote them 😉🙃

don't worry I am not against taking supplements-I have a cabinet full of them.
While it try to get most nutrients from food in todays world that is difficult. maybe impossible

~~~~~~~~~~~~~

all very interesting theories but they still do not fit my timeline. 

~~~~~~~~~~~

since you don't believe I have celiac disease (can't wait to inform the GI dr that she's not needed as a random stranger on the internet is sure I can't have it, 😆 😉😇)

and I have been off the SSRI for ...um, at least 10 yrs now...

any possible deficiency I had should surely be gone by now..?

 

and with no symptoms, it's hard to worry about chasing after something that just doesn't seem to be an issue at this time.

Good to keep in my back pocket if any symptoms pop up but it is distracting from the real serious issues I have RIGHT NOW

 

~~~~~~~~~~~

the endo is not going to like this but regardless of whether my potassium is up to a good level (need it to be at least 4 for my heart) I am not planning to take even the reduced dose of chlorthalidone

I'll take my chances with bone loss.

I can't tolerate the symptoms of taking this drug.

still curious to see what my blood work shows