Multi Hospital Visits..

[MerryA]

My Husband was diagnosed 15 years ago when there wasn't a lot of information out there about Celiac Disease.  His Gastrologist Didn't even have a pamphlet on the Disease & just said look on line for information. We have always tried our best to have no Gluten in his Diet but I'm aware it happens sometimes when eating out.  For the last several years my husband has been experiencing Chest pains in center of chest and has recently moved to left side causing more alarms for Heart issues. Once again we rush off to the Hospital for multiple test to find out everything is ok with the heart again. His stress level is elevated, blood pressure is high (on BP meds) he does have IBS & Acid Reflux.  We have been going back & forth from one Dr. to the next Cardiologist, Gastrologist, Pulmonologist, and now try to plan and seek out a Celiac Specialist Dr. Does anyone else that has been diagnosed for some time have any Chest pains, Shortness of Breath, Continued Stomach pains while living a 98% Gluten Free lifestyle?  I'm desperate for help as my husband lives almost daily with this pain and some days he doesn't get out of bed as it gets so bad. Any suggestions?? Thanks..

[knitty kitty]

@MerryA,

Welcome to the forum!

So sorry to hear about your husband.  

I had similar symptoms, high blood pressure and was put on meds, IBS symptoms, Gerd/reflux, shortness of breath, tachycardia, anxiety and panic attacks.  My symptoms resolved when I took high dose Thiamine Vitamin B1.  

The Gluten Free diet can be deficient in certain vitamins and minerals.  Eating a diet high in gluten free carbohydrates can deplete thiamine because gluten free facsimile foods are not enriched with vitamins and minerals like their gluten containing counterparts.  Thiamine is needed to turn carbohydrates, fats and proteins into energy for the body.  

We need more thiamine during periods of illness and emotional stress.  So being glutened in a restaurant can deplete thiamine further.  

Doctors don't recognize thiamine deficiency symptoms because they were taught it only happens in starving third world countries or only in alcoholism.  Celiac Disease damages the small intestine resulting in malabsorption of essential vitamins like thiamine and minerals like magnesium.  

I'm including some informative articles you can share with your husband's doctors.  

Beriberi (Thiamine deficiency)

https://www.healthline.com/health/beriberi#causes

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

And...

Hypertension, the Autonomic System, and Thiamine

https://www.hormonesmatter.com/hypertension-the-autonomic-system-and-thiamine/

[trents]

MerryA, welcome to the forum!

Recent studies have demonstrated that most people who claim to be eating gluten-free are actually eating lower gluten. They are unaware that they are getting gluten contamination from various sources even though they are (somewhat) conscious of trying to avoid gluten. The studies show that the number one source of this gluten contamination is eating out in restaurants. I don't mean to sound mean but 98% gluten-free is not good enough and if you are aware that it is happening when he eats out then he needs to stop eating out. When you eat out you have no control over "cross contamination". You may order things that are naturally gluten free but you have no idea whether or not the kitchen staff is cooking, stirring, slicing and handling the naturally gluten free things you ordered in the same pot, the same grill, the same tongs, the same knife, etc. that they are using for the gluten containing foods they are also cooking. 98% gluten-free means enough gluten contamination is happening to keep the inflammation in the gut smoldering.

Also, look at oats and dairy as foods that are causing a celiac-like reaction. Many celiacs find they react to these same foods like they do to gluten. Eggs too.

[MerryA]

2 hours ago, knitty kitty said:

@MerryA,

Welcome to the forum!

So sorry to hear about your husband.  

I had similar symptoms, high blood pressure and was put on meds, IBS symptoms, Gerd/reflux, shortness of breath, tachycardia, anxiety and panic attacks.  My symptoms resolved when I took high dose Thiamine Vitamin B1.  

The Gluten Free diet can be deficient in certain vitamins and minerals.  Eating a diet high in gluten free carbohydrates can deplete thiamine because gluten free facsimile foods are not enriched with vitamins and minerals like their gluten containing counterparts.  Thiamine is needed to turn carbohydrates, fats and proteins into energy for the body.  

We need more thiamine during periods of illness and emotional stress.  So being glutened in a restaurant can deplete thiamine further.  

Doctors don't recognize thiamine deficiency symptoms because they were taught it only happens in starving third world countries or only in alcoholism.  Celiac Disease damages the small intestine resulting in malabsorption of essential vitamins like thiamine and minerals like magnesium.  

I'm including some informative articles you can share with your husband's doctors.  

Beriberi (Thiamine deficiency)

https://www.healthline.com/health/beriberi#causes

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

And...

Hypertension, the Autonomic System, and Thiamine

https://www.hormonesmatter.com/hypertension-the-autonomic-system-and-thiamine/

Thank you very much for all the information. 

Nutricost Vitamin B1 (Thiamine) 500mg, 120 Capsules is this what mg. you recommend?

I still learn something everyday with Celiac information..

 

[knitty kitty]

27 minutes ago, MerryA said:

Thank you very much for all the information. 

Nutricost Vitamin B1 (Thiamine) 500mg, 120 Capsules is this what mg. you recommend?

I still learn something everyday with Celiac information..

 

No!  Not Thiamine Mononitrate!

Thiamine Mononitrate is the least bioavailable form of thiamine.  

You want Thiamine Hydrochloride. like this for example...

https://www.nowfoods.com/products/supplements/vitamin-b-1-100-mg-tablets

Or Benfotiamine....

https://www.lifeextension.com/search#q=benfotiamine&t=coveo4A2453FD

Or Allithiamine...

https://www.lifeextension.com/vitamins-supplements/item26106/allithiamine

All are available on line.

[knitty kitty]

A B Complex supplement containing all eight B vitamins is a good idea.  Because if you're low in one B vitamin, you're probably low across the board.  The eight B vitamins all work together.  They are water soluble and are nontoxic.  Any excess is excreted in urine.

A Magnesium citrate or magnesium glycine supplement should be added, too, because thiamine needs magnesium to function properly.  

 

[plumbago]

There's not really enough information (labs, vitals, age, weight, social history, etc etc) here for any of us to offer meaningful advice. It sounds like a horrible situation and based on what you wrote, the greatest thing going for your husband is you, and with your continued persistence and hopefully widening network of interested people, you will be able to put a picture together eventually. I would be concerned about the shortness of breath and would really try to press on with that. High blood pressure is also something you do not want, not that you need me to tell you that, and obviously should be addressed now.

Gastroenterologists are only now (barely) coming round to taking celiac disease seriously. The ones who scoped me (upper and lower were separate procedures in my case) did not give a fig about it and couldn't even talk meaningfully about it. It was likely a way for them to diagnose people. There are not even many other kinds of docs who take celiac disease that seriously. They exist, but they're rare.

Plumbago

[C4Celiac]

98% aint good enough

[Kate333]

I second what others have said about potential cross-contamination risks.  Restaurants--even those touting gluten-free menus--are a BIG problem, as are processed/packaged foods.  The big problem with both is lax regulation.  Most companies and restaurants essentially operate on the "honor system" (i.e., they are not really regulated to ensure those gluten-free claims/labels are accurate).

Also, your husband should get an updated TTG/IgA blood test to assess his current gluten antibody level.  If it is above normal, he should avoid eating out, try to buy/cook only fresh, unprocessed/unpackaged foods.

One last thing, constant stress results in MANY physical symptoms, including those you describe.  See anxietycentre.com for a detailed description of the mind-body link.  Since your husband has multiple health issues, and it's so important to keep his BP down, probably a good idea to request referral for evaluation for chronic stress/anxiety to see if he would benefit from short-term counseling/medication.  Multiple trips to ER followed by--thankfully!--normal test results suggest he has possibly developed a health anxiety/panic disorder, which is treatable with counseling and/or meds.  

I hope he feels better soon.

[C4Celiac]

It's all or nothing.   That 2% Gluten is gonna make you sick

[Wheatwacked]

Could be gall bladder. Deficient choline can cause this.

Could we be overlooking a potential choline crisis in the United Kingdom?

On 6/1/2022 at 7:45 AM, MerryA said:

Chest pains in center of chest and has recently moved to left side

 

 

 

Quote

I do not know if this really works or not, but I can tell you my experience:
Fatty liver is rampant in my family, especially for the 3 members who had to have their gall bladders removed. I started to get a constant pain on my left side where the liver is located. Started taking these as a supplement to help my liver break down the fats. Been using it now 2 tablets a day for 2 weeks, and the pain I had for months has stopped. I recommend consulting your doctor first, but it seems to have worked for me.   Amazon.com: Standard Process Choline - Liver Support, Gallbladder Support, and Nervous System Supplement with Choline Bitartrate and Honey - 90 Tablets : Health & Household

 

[knitty kitty]

But the liver (and gallbladder) are on the right side of the body.

The pancreas is on the left.

Edited June 2, 2022 by knitty kitty
Typo correction

[Wheatwacked]

Referred Pain?

Pain may also radiate to the back or occur under the shoulder blades, behind the breastbone, or on the left side. Gallbladder Disease and Gallstones

Quote

 

What does gallbladder pain feel like? Pain location:  The pain is usually felt in your upper right abdomen but can spread to your upper back or shoulder blade.

Some people also experience pain in the center of their abdomen, just below their breastbone. This discomfort can last several minutes to a few hours.

A 2012 research review showed that up to 15 percent of adults in the United States have or will have gallstones.

 

 

[MerryA]

On 6/1/2022 at 10:46 AM, trents said:

MerryA, welcome to the forum!

Recent studies have demonstrated that most people who claim to be eating gluten-free are actually eating lower gluten. They are unaware that they are getting gluten contamination from various sources even though they are (somewhat) conscious of trying to avoid gluten. The studies show that the number one source of this gluten contamination is eating out in restaurants. I don't mean to sound mean but 98% gluten-free is not good enough and if you are aware that it is happening when he eats out then he needs to stop eating out. When you eat out you have no control over "cross contamination". You may order things that are naturally gluten free but you have no idea whether or not the kitchen staff is cooking, stirring, slicing and handling the naturally gluten free things you ordered in the same pot, the same grill, the same tongs, the same knife, etc. that they are using for the gluten containing foods they are also cooking. 98% gluten-free means enough gluten contamination is happening to keep the inflammation in the gut smoldering.

Also, look at oats and dairy as foods that are causing a celiac-like reaction. Many celiacs find they react to these same foods like they do to gluten. Eggs too.

I realize how hard it is for everyone trying to make sure you don't get cross contamination when eating out and we really try to be careful. We have a company that takes us out of town so it can't be avoided.  There is so much he can't eat I feel sorry for him. He is also lactose Intolerant and has Diabetes. I have never heard of a egg problem, geez there goes his omelets. There is something going on that no one has found and I worry it is something someone has over looked. Just tired of the run arounds and was wondering if anyone else had similar concerns.

[MerryA]

On 6/1/2022 at 2:42 PM, plumbago said:

There's not really enough information (labs, vitals, age, weight, social history, etc etc) here for any of us to offer meaningful advice. It sounds like a horrible situation and based on what you wrote, the greatest thing going for your husband is you, and with your continued persistence and hopefully widening network of interested people, you will be able to put a picture together eventually. I would be concerned about the shortness of breath and would really try to press on with that. High blood pressure is also something you do not want, not that you need me to tell you that, and obviously should be addressed now.

Gastroenterologists are only now (barely) coming round to taking celiac disease seriously. The ones who scoped me (upper and lower were separate procedures in my case) did not give a fig about it and couldn't even talk meaningfully about it. It was likely a way for them to diagnose people. There are not even many other kinds of docs who take celiac disease that seriously. They exist, but they're rare.

Plumbago

His labs has been done the only thing they found was his Potassium was low and gave him a script.  He's 62 20l0bs but not sure what you mean about Social History, we have been married for 42 years. My problem is I took him in with the same problems we left with. They did all the test and never find anything. Just seeing if anyone else was having similar issues.

[MerryA]

7 hours ago, Wheatwacked said:

Could be gall bladder. Deficient choline can cause this.

Could we be overlooking a potential choline crisis in the United Kingdom?

 

 

 

 

I know his Gallbladder is fine but we did just find out he does have a Fatty Liver. 

Thanks for the info

[plumbago]

19 minutes ago, MerryA said:

His labs has been done the only thing they found was his Potassium was low and gave him a script.  He's 62 20l0bs but not sure what you mean about Social History, we have been married for 42 years. My problem is I took him in with the same problems we left with. They did all the test and never find anything. Just seeing if anyone else was having similar issues.

That's good. I'd also recommend posting a query on one of the many reputable diabetes dialogue boards / forums. Some are quite excellent.

I am a nurse and I work with a lot of patients with diabetes. Again, the most concerning thing I hear from you is the SOB and high blood pressure. Your husband would certainly qualify for a good cardiac work up (I would think). It sounds like you are wondering if there is a connection between celiac disease and the symptoms. Unfortunately I cannot answer that - others may be able to weigh in on pathophysiology of the connection between SOB and celiac disease.

It is good of you to reach out, but -- we are a voiceless, faceless bunch here, (we don't know each other from Adam) and my own personal tendency is to urge caution before taking any advice on the Internet. That's all I meant.

Plumbago

[Wheatwacked]

26 minutes ago, MerryA said:

his Potassium was low and gave him a script.

The recommended potassium intake for an average adult is 4,700 milligrams (mg) per day. If he is on blood pressure meds what are they? Some cause hypokalemia and some cause hyperkalemia and some do not.

"in the journal Hypertension, showed that for each 0.5 milliequivalent-per-liter (MEq/L) decrease in serum potassium, there was a 45 percent increased risk of diabetes. None of the people in the group receiving the fake drug developed low potassium levels." Potassium Loss From Blood Pressure Drugs May Explain Higher Risk Of Adult Diabetes - https://www.hopkinsmedicine.org/news/media/releases/potassium_loss_from_blood_pressure_drugs_may_explain_higher_risk_of_adult_diabetes

The FDA has limited OTC potassium supplementation to <100 mg because it can cause intestinal lesions. A 100 gram banana has 358 mg of potassium.

 

[MerryA]

8 hours ago, knitty kitty said:

But the liver (and gallbladder) are on the right side of the body.

The pancreas is on the left.

Thats what I was thinking..

[MerryA]

10 minutes ago, Wheatwacked said:

The recommended potassium intake for an average adult is 4,700 milligrams (mg) per day. If he is on blood pressure meds what are they? Some cause hypokalemia and some cause hyperkalemia and some do not.

"in the journal Hypertension, showed that for each 0.5 milliequivalent-per-liter (MEq/L) decrease in serum potassium, there was a 45 percent increased risk of diabetes. None of the people in the group receiving the fake drug developed low potassium levels." Potassium Loss From Blood Pressure Drugs May Explain Higher Risk Of Adult Diabetes - https://www.hopkinsmedicine.org/news/media/releases/potassium_loss_from_blood_pressure_drugs_may_explain_higher_risk_of_adult_diabetes

The FDA has limited OTC potassium supplementation to <100 mg because it can cause intestinal lesions. A 100 gram banana has 358 mg of potassium.

 

Losartan/HCTZ 100/25mg Tablets once a day. Wow you guys are better than the FBI... Never get any responses or suggestions from the Doctors.. Thanx

[Wheatwacked]

Hypokalemia. Most widely recognized, the first adverse effect of thiazide diuretics is hypokalemia. As discussed above, hypokalemia is a sequela of the aldosterone-mediated actions of the Na/K pump in the CT. Hypokalemia can be life-threatening and requires monitored during the first 2-3 weeks of HCTZ therapy.   https://www.ncbi.nlm.nih.gov/books/NBK532918/#:~:text=Hypokalemia.,3 weeks of HCTZ therapy.

Out of curiosity do you know his homocysteine level and vitamin D plasma?

[knitty kitty]

@MerryA,

Losartan/HCTZ 100/25mg Tablets 

HCTZ is hydrochlorothiazide.  It is a diuretic.  Diuretics can cause Thiamine deficiency.  Thiamine is flushed out of the body with urine.

I was prescribed HCTZ and my doctors did not recognize the ensuing thiamine deficiency symptoms.  I knew what was happening because I had learned about Thiamine deficiency at university whilst getting a degree.

I agree, don't take advice from strangers on the internet.  That's why I give references to peer-reviewed published scientific studies and articles you can take to your doctor to discuss further.  

Like these....

Diuretic use: a risk for subclinical thiamine deficiency in elderly patients

https://pubmed.ncbi.nlm.nih.gov/10842416/

And...

A Retrospective Case Series of Thiamine Deficiency in Non-Alcoholic Hospitalized Veterans: An Important Cause of Delirium and Falling?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8037750/

And...

Shoshin Beriberi Induced by Long-Term Administration of Diuretics: A Case Report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4106092/

And...

Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations

https://www.cureus.com/articles/31208-thiamine-level-in-type-i-and-type-ii-diabetes-mellitus-patients-a-comparative-study-focusing-on-hematological-and-biochemical-evaluations

And...

Thiamine deficiency in diabetes mellitus and the impact of thiamine replacement on glucose metabolism and vascular disease

https://pubmed.ncbi.nlm.nih.gov/21564442/

 

Hope this helps!

P.S.  I have Type Two Diabetes and keep off medications by taking Benfotiamine and Thiamine HCl.  Metformin I was prescribed caused thiamine deficiency, too.  

Edited June 3, 2022 by knitty kitty
Added post script

[knitty kitty]

Forgot the Fatty Liver...and thiamine studies....

High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition

https://pubmed.ncbi.nlm.nih.gov/33608323/

And...

OCT1 in hepatic steatosis and thiamine disposition

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4353231/

 

[knitty kitty]

Shortness of breath is a symptom of Thiamine deficiency.

Thiamine deficiency is called Beriberi....from....

"the Arabic words buhr, meaning “asthma,” and bahri, meaning “sailor” (“Sailor’s asthma”)."

 

Pathophysiology, prevention, and treatment of beriberi after gastric surgery

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7666909/

 

Post-gastric surgery patients have malabsorption.  Celiac Disease patients have malabsorption.

[Beverage]

I had a lot of success with the strategies in this article...he may not have a hiatal hernia, but the things here help regardless.

https://drjockers.com/hiatal-hernia/

If he is taking any antacids, not good, we need acid in our stomach to absorb many vitamins, for example, vitamin D.

I had great success with the heel thumping maneuver, also elevating head of bed by placing two 2x4's under feet at head of bed, and especially drinking a sip of Bragg's apple cider vinegar before any meals with protein. 

I also chew two DGL tablets if needed after meals, they coat, they don't reduce acid.  I use this one, as it has the least sugar:

https://www.amazon.com/Integrative-Therapeutics-Rhizinate-Deglycyrrhizinated-Licorice/dp/B001WUC406?pd_rd_w=QfKKe&content-id=amzn1.sym.bc622850-a717-4d94-96c3-7cc183488298&pf_rd_p=bc622850-a717-4d94-96c3-7cc183488298&pf_rd_r=63ZFZM8X13J3ZRG0C9J2&pd_rd_wg=m5E72&pd_rd_r=23417c98-8254-4fa8-9d37-3f2cfc622fd9&pd_rd_i=B001WUC406&psc=1&ref_=pd_bap_d_rp_1_t