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Symptoms

Davidcrook
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Davidcrook Newbie
Davidcrook
Posted

Hi, I’ve been feeling unwell at the moment where I’m out of breath, tired all the time have a cough but not regular, my heart somethings beats a lot quicker and tight chest, I’ve had blood tests and a chest X-ray along side a COVID test and all have come back fine but looking at google it’s seems some of my symptoms are similar to celiac. I just ate some food and my stomach is hurting. Plus I seem to be going to the toilet a lot more and just wanted some advise on if everything seems to be related

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Scott Adams Grand Master
Scott Adams
Posted

If you have access to health care it would make sense for you to get screened for celiac disease. There are home tests available for under $100 if you don't have healthcare. To be screened you need to keep eating gluten daily until all tests are completed. Here is info on the blood tests:

 

JoBlackburn Rookie
JoBlackburn
Posted
44 minutes ago, Davidcrook said:

Hi, I’ve been feeling unwell at the moment where I’m out of breath, tired all the time have a cough but not regular, my heart somethings beats a lot quicker and tight chest, I’ve had blood tests and a chest X-ray along side a COVID test and all have come back fine but looking at google it’s seems some of my symptoms are similar to celiac. I just ate some food and my stomach is hurting. Plus I seem to be going to the toilet a lot more and just wanted some advise on if everything seems to be related

Thats what made me click onto have a gluten and dairy problem! 

My symptoms were wheezing, tight chest and rapid heart beat. Do you have asthma by any chance? I do and gluten and dairy are bad for it in my case. Since I've cut them out and gone vegan it's Improved.

Also please make sure that no creams or anything you are putting on your skin have gluten. I made that mistake a few months ago and the wheezing was terrifying. 😰 

In my case it depends on how much gluten I have by accident a small amount it's a headache or migrane with tiredness, dizziness, constaption, body aches and that then progresses onto breathing difficulties and last week I made a mistake with a load of oat cakes! It makes me collapse with severe mood changes. 

 

Be safe please. 

Davidcrook Newbie
Davidcrook
Posted
  • Author

Hi, the nurse at my doctors thought it was asthma but the inhalers I had wasn’t working and I kept going back as the simplest things would make me out of breath tight chest and rapid heart rates but over the last few weeks eating has become harder. I only use the normal shower stuff but haven’t looked at the ingredients yet. Just getting frustrated as they can’t seem to see what’s wrong

knitty kitty Grand Master
knitty kitty
Posted

David and Jo, 

Those symptoms you described are also symptoms of early thiamine deficiency.  The trouble breathing, cough, rapid heart rate, fatigue and digestive problems are all early thiamine deficiency symptoms.  

We can become low in thiamine within two weeks if we eat a high carbohydrate diet, are very physically active especially outdoors in hot weather,  and if we are under emotional stress or are ill.  (Doctors are giving thiamine to Covid patients with vitamin C and B6 to prevent sepsis.)

Thiamine deficiency is easily overlooked by doctors because the symptoms are so subtle. Ask your doctor for an erythrocyte transketolase test to check for thiamine deficiency.   

Hope this helps!

JoBlackburn Rookie
JoBlackburn
Posted
6 hours ago, Davidcrook said:

Hi, the nurse at my doctors thought it was asthma but the inhalers I had wasn’t working and I kept going back as the simplest things would make me out of breath tight chest and rapid heart rates but over the last few weeks eating has become harder. I only use the normal shower stuff but haven’t looked at the ingredients yet. Just getting frustrated as they can’t seem to see what’s wrong

as knitty kitty said it may well be thiamine deficiency or gluten, dairy or all three. maybe you could bring this up with your doctor ?

with the inhaler situation that is the same as me they had me on max strength and nothing helped till I sorted it out myself with dietary changes. asthma is an umbrella term and anything can flair it off for me its foods and seasonal allergies.  

have a wee look online there are a few really good bits of info on this like with gluten, dairy and asthma. 

if you don't want to maybe try cutting out gluten for a while and see how you symptoms improve 

thiamine rich foods are 

black beans

lentils 

edamame beans 

macadamia nuts

and if youre not vegan then pork,beef

knitty kitty Grand Master
knitty kitty
Posted

Here's an article by Dr. Lonsdale about the asthma and thiamine connection.....

https://www.hormonesmatter.com/asthma-a1at-deficiency-thiamine/

Eat more Liver! It's a great source of thiamine!

🐱

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Posterboy Mentor
Posterboy
Posted
On 7/28/2020 at 1:19 PM, Davidcrook said:

Hi, I’ve been feeling unwell at the moment where I’m out of breath, tired all the time have a cough but not regular, my heart somethings beats a lot quicker and tight chest, I’ve had blood tests and a chest X-ray along side a COVID test and all have come back fine but looking at google it’s seems some of my symptoms are similar to celiac. I just ate some food and my stomach is hurting. Plus I seem to be going to the toilet a lot more and just wanted some advise on if everything seems to be related

DavidCrook,

I think Knitty Kitty has given you a good resource.

Try finding some Benfotiamine a Fat Soluble B1 and take it with meals.

See this article about the Vitamins deficiency that can cause a racing heart....

https://www.livestrong.com/article/503879-vitamin-deficiencies-racing-heart/

Thiamine and Magnesium Glycinate can also help your fatigue issues.

This is a nice article too how back in the "Olden Days" before doctor's knew Vitamins were things in foods that kept us healthy before an enlarged heart ( a sign of "wet" beri beri) was caused by a Vitamin deficiency.

This article explains why it is so that people/sailors could/would develop "Sailors Asthma" from a Thiamine Deficiency aka Beri Beri back in the day or Kakke if you know a little Japanese and how they used Barley to defeat Beri Beri in the Japanese Navy.

https://www.psychologytoday.com/us/blog/evolutionary-psychiatry/201204/nutritional-brain-bomb-thiamine-deficiency 

I hope this is helpful but it is not medical advise.

Posterboy,

DJFL77I Experienced
DJFL77I
Posted

Hurricanes about to hit soon... stock up on your supplies if you're on east coast FL area...   power will surely go out here I guess  ;/

 

DJFL77I Experienced
DJFL77I
Posted

the calm before the storm   😨

 

20200801_064814.webp

cyclinglady Grand Master
cyclinglady
Posted

Stay safe!  

Matt McFaul Rookie
Matt McFaul
Posted
On 7/28/2020 at 2:08 PM, JoBlackburn said:

Thats what made me click onto have a gluten and dairy problem! 

My symptoms were wheezing, tight chest and rapid heart beat. Do you have asthma by any chance? I do and gluten and dairy are bad for it in my case. Since I've cut them out and gone vegan it's Improved.

Also please make sure that no creams or anything you are putting on your skin have gluten. I made that mistake a few months ago and the wheezing was terrifying. 😰 

In my case it depends on how much gluten I have by accident a small amount it's a headache or migrane with tiredness, dizziness, constaption, body aches and that then progresses onto breathing difficulties and last week I made a mistake with a load of oat cakes! It makes me collapse with severe mood changes. 

 

Be safe please. 

I was going to make a new post describing what happens to me, but you said it perfectly.  I experience the exact symptoms.  I guess you answered that for me 😕

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  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
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      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
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      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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