Confused and a little scared...

[lrmilas]

I am about to turn 69, spent the last four years rock climbing in the desert, and suddenly am very very sick.  I rapidly lost 20 pounds, and my iron/ferritin levels plummeted from 100 a month ago to 30 today. I've been unable to sleep... in fact, the nervous symptoms are worse than the physical ones.  Celiac was the last thing on my mind because I was thinking I've been 'pretty much' gluten free.  I never eat any actual gluten products.  But, I have to admit, over the last two years I haven't been fanatical.  We've been to a few restaurants where they were 'pretty sure' the entire meal was gluten free.  The priest at our church accidentally gave me regular communion wafers 3 or 4 times.  etc.  Looking back now I can see many instances where I;ve had small amounts of gluten (like eating chinese food with soy sauce) but never gave it a thought.  But over the last two years I've been steadily getting more and more tired, thinking it was that I needed more protein, vitamins, etc.  Can it suddenly cause this level of exhaustion?    

My new Gastro said "The only thing that makes sense here would be Celiac.  Nothing else would explain the weight loss, iron loss and total exhaustion."

I was also diagnosed with a protozoa called blastocystis.  Because it has persisted, I was treated with Flagyl--a drug that about did me in.  I found out yesterday that the Flagyl did not touch the infection, it's still there and thriving.  The thing is, is a normal healthy person this wouldn't even be treated for blastocystis since it is not considered a harmful bug.  It has been suggested that the problem is Celiac, which prevents the gut  from mounting a normal defense.  Has anyone had this kind of thing happen?

Today is Day 3 of being absolutely 1000% gluten free.  My new Gastro wants to do an endoscopy next Thursday.  I really suspect it will be negative, as it was 10 years ago when this same thing happened to me.  What if labs and endoscopy are negative?  Does that mean I've been imagining that I have Celiac?  Can you be this sick with a normal Endoscopy?  How long until I start feeling better?

Thank you for any feedback.  

 

[knitty kitty]

Welcome to the forum!

Get checked for THIAMINE Vitamin B1 deficiency!

Flagyl is a medication that keeps thiamine from working.  

Symptoms of Thiamine deficiency include rapid, unintentional weight loss, fatigue (beriberi means "I can't, I can't), anxiety and insomnia.

Here's some helpful articles...

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

And...

Metronidazole encephalopathy: Uncommon reaction to a common drug

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477391/

 

My doctors didn't recognize my thiamine deficiency either.  In addition to undiagnosed Celiac, I was on three prescription medications that are known to cause thiamine deficiency.  High dose Thiamine supplementation was needed to restore my health. 

It's important to have Thiamine deficiency treated promptly to reduce risk of permanent damage.  Do contact your doctor.  

The World Health Organization says thiamine deficiency can be diagnosed if improvement is seen after thiamine supplementation has been given.  WHO recommends 500-1500 mg of Thiamine Hydrochloride several times a day for several days.  Improvement can be seen in hours to days.  

In my case, I had improvement within hours.  I was truly astounded.  I've continued taking Thiamine HCl, Allithiamine and Benfotiamine.  The improvements in my health continued for months.  

Hope this helps!

[lrmilas]

Thank you so much for the heads up!  I do take a good B Vitamin, and my B12 shots have B1 in them... however I cannot say I've been faithful.  I also have Benfotiamine.  I will take some today and keep on taking!  I REALLY appreciate this information!  

 

[knitty kitty]

High dose Thiamine is required to correct Thiamine deficiency otherwise the Thiamine will have trouble getting into cells. Thiamine Transporters turn off during deficiency.  High dose Thiamine can flood the system and get into the cells better.  

Dr. Lonsdale explains here...

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

[lrmilas]

Thank you so much for this.  I  just browsed the study but am too wiped out to read it all right now.  Bottom line, what do you take daily?  How much of what?  I am also a Type 1 diabetic, so I know thiamine is a factor. 

[Rogol72]

Speaking from experience, Flagyl is a really nasty antibiotic. It leaves a metallic taste in the mouth hours after taking it, wipes out the gut flora! I have found that being consistent with taking supplements is the only way to get well combined with a strict gluten-free diet and lots of patience ... at least in my case! Even trace amounts of gluten getting in to the body regularly will cause persistent issues. I take a B Complex 50, along with 300mg of Thiamine Hydorchloride, Omega 3 Fish Oil 1g, Vitamin D 2000iu, low dose Iron Bisglycinate 15mg to top up every now and then as needed. I hope you feel better soon.

[lrmilas]

I am hanging onto these words.  I don’t know when I last had a trace amount of gluten but I suspect it’s been frequent.  And now here I am powering back iron (120 mg a day), B12 and other things and feeling weak enough to be in a hospital.  If this is celiac related I’m wondering how long before I start to turn around.  I’m on my way to the store to pick up B1.  I just can’t tell you how much I appreciate your taking the time to post.  

[knitty kitty]

1 hour ago, lrmilas@gmail.com said:

Thank you so much for this.  I  just browsed the study but am too wiped out to read it all right now.  Bottom line, what do you take daily?  How much of what?  I am also a Type 1 diabetic, so I know thiamine is a factor. 

When I was recovering, I took Thiamine Hydrochloride 300 mg every three hours.  That's about as much as the body can absorb in that amount of time.  I had to have Benfotiamine and Allithiamine sent to me, but added those in as soon as they arrived.  I took Benfotiamine 250 mg with meals because this form helps with gastrointestinal healing and diabetes.  I have Type Two.  I took Allithiamine 100 mgs with 100 mgs thiamine hydrochloride in the morning to get my brain going.  

At one point I was taking up to 1500 mg spread throughout the day.  I was able to reduce that over time.  I really had to experiment with my dosage.  Some people take more, some less.

There is a point where you may start feeling icky, but keep taking the Thiamine!  It's a physical change the body goes through when switching from rationing minimum thiamine supplies and anaerobic methods, to operating aerobically with plentiful thiamine as the body starts running as it's supposed to.  It will pass.

I am so glad this has helped you!  Do keep us posted on your progress.  I'd love to hear how quickly you start feeling better.  

 

[knitty kitty]

P.S. you may want to lay off the iron and try copper instead.  Thiamine and copper make enzymes that allow cells to hold onto iron.  

[lrmilas]

My mind is racing. I have studied nutrition my entire life. I know about B1. Yet it never occurred to me or any doctor to test for it… except once ten years ago when the test came back very low. It was a shock then because I was taking at least some supplements.  As I recall I had lost a huge amount of weight, couldn’t sleep, paced endlessly.  I’m doing that again.

 I moved to the desert to rock climb this late in life but over the last few years I’ve been progressively more tired… trying everything, liver, iron, b12 shots.  Tons of protein.  And then, every day at 2pm I would crash hard. Not just “I need a little nap.” But comatose.  It’s happening now every day and severe enough to frighten me.  I dread it so much… every day I’m on my knees begging to get through it.  I’ve tested heavy metals, phthalates, VOCs. Nothing much there.  Gave up chocolate in case it’s the cadmium and lead. Got rid of wifi.  Nothing has helped. 
 

i checked the multi I do take and at best I am getting one half RDA for thiamin.  I’m sure exercising in the desert like a maniac hasn’t helped.  I’m grieving to think it may be over. And thinking about this… I drink coffee, as a Celiac I’m not eating many grains and none are fortified… a perfect storm for B1 deficiency.   
 

I hope I can keep myself out of the hospital.  Will start thiamine protocol today and pray.  But what is that third kind of thiamine?  Never heard of that.  Thank you so much. 

 

[knitty kitty]

Allithiamine is found in garlic.  It is soluble in fat, so that means it can get inside cells easily.  It can cross the blood brain barrier by itself and is especially helpful for neurological symptoms like brain fog, anxiety, ADHD, memory loss, Parkinson's, Alzheimer's, Wernicke's, Aspergers, schizophrenia and depression.  

Benfotiamine is also fat soluble, but needs a carrier, a red blood cell, to cross the blood brain barrier.  Benfotiamine has been shown to be especially effective in diabetes and in healing the gastrointestinal tract.  

Magnesium is needed as a cofactor with Thiamine.  Magnesium citrate glycinate is a gentle, easily absorbed form of magnesium.  This is the form I take.  Magnesium will help you relax and sleep at night.

Yes, Celiac Disease and our dietary changes do set the stage for vitamin and mineral deficiencies.  

Hope you feel better soon.  

[Kate333]

Get the labs (TTG/IgA) and endoscopy your GI recommends.  That is the only way to confirm for sure whether (or not) you have celiac disease and your symptoms are due to ongoing G exposure for the last 2 years.   I would start with that before speculating or considering other causes for your symptoms.  And I would not worry about the result BEFORE you get them...that only fuels anxiety.  If you do indeed have celiac disease, you will have the knowledge you need to learn how to heal properly and avoid future problems.

If you are diagnosed with celiac disease, you must be advised that.."pretty much gluten-free" is NOT a real gluten-free diet required of all people with celiac disease to heal and maintain gut and body health.  It's not enough to simply reduce G in diet and it's not safe to "cheat once in a while."  And eating out regularly at restaurants, relying on "pretty sure meals are gluten-free" assurances from those places is VERY RISKY because of cross-contamination and lack of safety testing/regulations to ensure gluten-free claims of restaurants are indeed accurate.

Good luck on your healing journey.  

 

[lrmilas]

1 hour ago, Kate333 said:

Get the labs (TTG/IgA) and endoscopy your GI recommends.  That is the only way to confirm for sure whether (or not) you have celiac disease and your symptoms are due to ongoing G exposure for the last 2 years.   I would start with that before speculating or considering other causes for your symptoms.  And I would not worry about the result BEFORE you get them...that only fuels anxiety.  If you do indeed have celiac disease, you will have the knowledge you need to learn how to heal properly and avoid future problems.

If you are diagnosed with celiac disease, you must be advised that.."pretty much gluten-free" is NOT a real gluten-free diet required of all people with celiac disease to heal and maintain gut and body health.  It's not enough to simply reduce G in diet and it's not safe to "cheat once in a while."  And eating out regularly at restaurants, relying on "pretty sure meals are gluten-free" assurances from those places is VERY RISKY because of cross-contamination and lack of safety testing/regulations to ensure gluten-free claims of restaurants are indeed accurate.

Good luck on your healing journey.  

 

Thank you Kate. I know everyone wants a positive for sure diagnosis. I have not eaten gluten in any sizable amount in years. I just had the labs done again they are all negative. I am sure endoscopy would be too. However I’m a type one diabetic And the genetic testing I havd done for Celiac puts me at the very highest level of likelihood. I don’t know if I mentioned here that about 10 years ago I lost about 40 pounds and all my iron and it really started after eating a large submarine sandwich and some other major indiscretions and after that the weight just started coming off. When I went to see my endocrinologist she said this looks like celiac and I told her that my endoscopy was negative and she said “I don’t care about any of your labs or endoscopy. Half my type one diabetic patients have celiac and the only way you’re going to know for sure is to be 1000% gluten-free for the next six months.“ I believe she was right because I did what she said and got better. I have lost all but 6 of my teeth, I have had osteoporosis from a young age and a host of other chronic illnesses most of my life but one thing is certain if I stop eating all gluten things turn around pretty fast so I’m going with that for now. I don’t know if there is something else that the doctor could find with a scope but I am so weak I’m really afraid of letting everyone down by just not being able to show up the morning of. So right now I’m leaning towards postponing this till I’m stronger.

[knitty kitty]

16 hours ago, lrmilas@gmail.com said:

 However I’m a type one diabetic.

Here's some information about how Celiac Disease may present differently with Diabetes.....

IgA Anti-transglutaminase Autoantibodies at Type 1 Diabetes Onset Are Less Frequent in Adult Patients and Are Associated With a General Celiac-Specific Lower Immune Response in Comparison With Nondiabetic Celiac Patients at Diagnosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3447839/

And...

Type 1 Diabetes and Celiac Disease: Clinical Overlap and New Insights into Disease Pathogenesis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156157/

And...

Thiamine and diabetes: back to the future?

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

 

[AmyLue]

On 9/16/2022 at 9:12 AM, lrmilas@gmail.com said:

I am about to turn 69, spent the last four years rock climbing in the desert, and suddenly am very very sick.  I rapidly lost 20 pounds, and my iron/ferritin levels plummeted from 100 a month ago to 30 today. I've been unable to sleep... in fact, the nervous symptoms are worse than the physical ones.  Celiac was the last thing on my mind because I was thinking I've been 'pretty much' gluten free.  I never eat any actual gluten products.  But, I have to admit, over the last two years I haven't been fanatical.  We've been to a few restaurants where they were 'pretty sure' the entire meal was gluten free.  The priest at our church accidentally gave me regular communion wafers 3 or 4 times.  etc.  Looking back now I can see many instances where I;ve had small amounts of gluten (like eating chinese food with soy sauce) but never gave it a thought.  But over the last two years I've been steadily getting more and more tired, thinking it was that I needed more protein, vitamins, etc.  Can it suddenly cause this level of exhaustion?    

My new Gastro said "The only thing that makes sense here would be Celiac.  Nothing else would explain the weight loss, iron loss and total exhaustion."

I was also diagnosed with a protozoa called blastocystis.  Because it has persisted, I was treated with Flagyl--a drug that about did me in.  I found out yesterday that the Flagyl did not touch the infection, it's still there and thriving.  The thing is, is a normal healthy person this wouldn't even be treated for blastocystis since it is not considered a harmful bug.  It has been suggested that the problem is Celiac, which prevents the gut  from mounting a normal defense.  Has anyone had this kind of thing happen?

Today is Day 3 of being absolutely 1000% gluten free.  My new Gastro wants to do an endoscopy next Thursday.  I really suspect it will be negative, as it was 10 years ago when this same thing happened to me.  What if labs and endoscopy are negative?  Does that mean I've been imagining that I have Celiac?  Can you be this sick with a normal Endoscopy?  How long until I start feeling better?

Thank you for any feedback.  

 

I’m so sorry to hear of your troubles…and they sound very familiar!   I was diagnosed with a parasite called cryptosporidium the end of last year.  At first my doctor wasn’t going to prescribe medicine because it usually resolves itself.   The meds did get rid of it!  

Fast forward a few months, I developed diarrhea, weight loss, low iron, fatigue.   Celiacs is not known in my family, but it was later discovered that I carry the gene.  My first scopes all came back “clean”.  During my second ones, biopsies of my small intestine were taken and showed “near total villi blunting”.  
 

Fast forward to today, I am much better. Hiked the mountains again and have most my strength back.   My local doctors believe there was a correlation between the crypto taking over and Celiacs.

 I have also been on budesonide to help heal my villi and TPN (total parental nutrition, through IV).  This is my last week of TPN. I am completely gluten free now! I am Not going down that road again!

[AmyLue]

To add to my previous reply,  I was very active and never sick! I hadn’t been to the doctor in over 5 years (other than annual well woman exam)!!   But looking back, I can see small signs of gluten bothering me.

[lrmilas]

18 minutes ago, AmyLue said:

I’m so sorry to hear of your troubles…and they sound very familiar!   I was diagnosed with a parasite called cryptosporidium the end of last year.  At first my doctor wasn’t going to prescribe medicine because it usually resolves itself.   The meds did get rid of it!  

Fast forward a few months, I developed diarrhea, weight loss, low iron, fatigue.   Celiacs is not known in my family, but it was later discovered that I carry the gene.  My first scopes all came back “clean”.  During my second ones, biopsies of my small intestine were taken and showed “near total villi blunting”.  
 

Fast forward to today, I am much better. Hiked the mountains again and have most my strength back.   My local doctors believe there was a correlation between the crypto taking over and Celiacs.

 I have also been on budesonide to help heal my villi and TPN (total parental nutrition, through IV).  This is my last week of TPN. I am completely gluten free now! I am Not going down that road again!

Wow thank you for posting this! Yousaid just what I needed to hear right now. I had to cancel my endoscopy this week because I’m just too sick and besides unless I had something like cancer what can it tell us? But clearly my parasite is back and flourishing and I have been prescribed two powerful drugs to try to knock it out. That prescription won’t be in until tomorrow so I am waiting through another day.  Meanwhile I am learning a lot about this particular parasite and what it does and doesn’t like. For instance blastocysts love probiotics so I have been unwittingly giving it exactly what it needs to thrive.
 

i’m still too close to my situation to really understand it. I almost forget that the root problem is celiac. However my new gastroenterologist thanked me for sending him my genetic testing and I think for him that settles it. So I guess the plan now is to get rid of the parasite and continue healing gluten-free.

Sounds like you have been through a lot and how wonderful that you are regaining  some strength and out hiking again! That must be so rewarding!  It sure would be great to stay in touch and compare notes along the way. I’m really happy you wrote. 

 

 

 

[AmyLue]

15 hours ago, lrmilas@gmail.com said:

Wow thank you for posting this! Yousaid just what I needed to hear right now. I had to cancel my endoscopy this week because I’m just too sick and besides unless I had something like cancer what can it tell us? But clearly my parasite is back and flourishing and I have been prescribed two powerful drugs to try to knock it out. That prescription won’t be in until tomorrow so I am waiting through another day.  Meanwhile I am learning a lot about this particular parasite and what it does and doesn’t like. For instance blastocysts love probiotics so I have been unwittingly giving it exactly what it needs to thrive.
 

i’m still too close to my situation to really understand it. I almost forget that the root problem is celiac. However my new gastroenterologist thanked me for sending him my genetic testing and I think for him that settles it. So I guess the plan now is to get rid of the parasite and continue healing gluten-free.

Sounds like you have been through a lot and how wonderful that you are regaining  some strength and out hiking again! That must be so rewarding!  It sure would be great to stay in touch and compare notes along the way. I’m really happy you wrote. 

 

 

 

 

15 hours ago, lrmilas@gmail.com said:

Wow thank you for posting this! Yousaid just what I needed to hear right now. I had to cancel my endoscopy this week because I’m just too sick and besides unless I had something like cancer what can it tell us? But clearly my parasite is back and flourishing and I have been prescribed two powerful drugs to try to knock it out. That prescription won’t be in until tomorrow so I am waiting through another day.  Meanwhile I am learning a lot about this particular parasite and what it does and doesn’t like. For instance blastocysts love probiotics so I have been unwittingly giving it exactly what it needs to thrive.
 

i’m still too close to my situation to really understand it. I almost forget that the root problem is celiac. However my new gastroenterologist thanked me for sending him my genetic testing and I think for him that settles it. So I guess the plan now is to get rid of the parasite and continue healing gluten-free.

Sounds like you have been through a lot and how wonderful that you are regaining  some strength and out hiking again! That must be so rewarding!  It sure would be great to stay in touch and compare notes along the way. I’m really happy you wrote. 

 

 

 

I certainly hope treating the parasite helps!!!   Definitely do the scopes though, and have them biopsy small intestine to check for villi damage! You may need a steroid and modified diet to help heal if there is any damage!!!!   I found out a few weeks ago that eating out is a scary option for me! I accidentally got gluttened and was sick for a few days! 

[AmyLue]

4 minutes ago, AmyLue said:

 

I certainly hope treating the parasite helps!!!   Definitely do the scopes though, and have them biopsy small intestine to check for villi damage! You may need a steroid and modified diet to help heal if there is any damage!!!!   I found out a few weeks ago that eating out is a scary option for me! I accidentally got gluttened and was sick for a few days! 

Also, I looked up your blastocysts. One treatment is Nitazoxanide.  That is same medication I was given for my crypto!!  3 days worth of pills was all it took!  No antibiotics.   Strong antibiotics can also cause C-Diff.

[lrmilas]

10 hours ago, AmyLue said:

Also, I looked up your blastocysts. One treatment is Nitazoxanide.  That is same medication I was given for my crypto!!  3 days worth of pills was all it took!  No antibiotics.   Strong antibiotics can also cause C-Diff.

Thank you for this.  I think that may be the next drug if the Tinadazole doesn’t work. I really appreciate you sharing this. 

[lrmilas]

I think my blasto is back. The single dose of Tinidazole cleared up my diarrhea for a few days, now I have the rumbling stomach  and fatigue again. It’s only been one week.  I am wondering about alinia. Did you have side effects?  It really worked???  I need to get my doctor to pay attention to this!  

[knitty kitty]

Just repeating that those drugs for the parasites cause Thiamine deficiency.  So do antibiotics.

Gastrointestinal Beriberi (one way Thiamine deficiency presents) causes rumbly tummy and fatigue.