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flourgirl

By flourgirl
in Coping with Celiac Disease

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flourgirl Apprentice
flourgirl
Posted

Just wondering.....have had lots of trouble with very low blood pressure. Had to do the heart monitor thing because of irregular heartbeat. It was decided that the bouts of tachycardia were nothing to be concerned over, same with the early beats. I'm so tired of being so tired, and so cold all of the time. Is this a normal thing with Celiac, or should I keep looking for "other" answers? Thanks for all the help.

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MNBeth Explorer
MNBeth
Posted

I don't know, but my own flippety floppety heart is driving me bonkers. I went off my thyroid meds because too high a dose has caused this in the past, and I wondered if my newly gluten-free body still needed it.

Going off it has helped some, but all the pre-thyroid-med fatigue has gradually come back, and the heart thing hasn't stopped completely, anyway. I have an appointment in a couple of weeks with the alt.med.dr. who prescribed the thyroid stuff in the first place, so we'll see what he says. It will be my first appt. w/him since I did the Enterolab test. He's never heard of Enterolab, so it could be interesting.

missy'smom Collaborator
missy'smom
Posted

I have low blood pressure and have a life long history of fainting. When I pass out my blood pressure goes very low and takes a long time to come back up. The doctors where I live now are the first in my whole life to monitor and document it. I wore the halter monitor 10 yeas ago and it showed an occasional irregular beat but the doctor dismissed it. The doctor I saw most recently and who's office I passed out in said that no way was it sufficient to have just had the halter monitor and recommeneded a work up but a cardiologist and a neurologist.

I also have a history of being low in energy and cold. All these thing are not necessarily connected to celiac disease for me. As far as I know I've only had celiac disease for 9 years but have had the others all my life. I'm very small and fair skinned and doctors my whole life have asked if I'm anemic but I don't know if they've tested. It's on my to do list.

Fatigue with celiac disease can be caused by deficencies as well as adrenal fatigue. My sister has been diagnosed with adrenal fatigue and has improved greatly with treatment. When we compare notes I can see that I probably had problems with this as well but it has improved enough in the year+ that I've been gluten-free.

oceangirl Collaborator
oceangirl
Posted

Flourgirl,

Hi. I have had low blood pressure and VERY slow heartrate( halter monitor recorded me at 33 beats per minute during one phase of slee- average is 56 BPM) and just got a work-up by cardiologist (again- had it 15 years ago) because a Naturopath I'm seeing to help me with celiac (I'm 2 years gluten-free.) got worried about my irregular heartbeat along with low everything. I am a runner and have been for 30 years now. (2 miles a day) I also dance. I wouldn't say I'm low energy but I am cold a lot. The cardiologist feels the low rate is from being in good shape from running and said the arrythmia is benign. If you have been checked I wouldn't worry about it; it's probably just "you".

I have fainted every single time I've thrown up since I was a little girl- it's terrifying! I'm terrified of stomach "bugs" for that very reason. It was just explained to me it's because of low blood pressure and the vagus nerve. Still scary though. I hope you don't faint very often.

Feel better.

lisa

YoloGx Rookie
YoloGx
Posted
Flourgirl,

Hi. I have had low blood pressure and VERY slow heartrate( halter monitor recorded me at 33 beats per minute during one phase of slee- average is 56 BPM) and just got a work-up by cardiologist (again- had it 15 years ago) because a Naturopath I'm seeing to help me with celiac (I'm 2 years gluten-free.) got worried about my irregular heartbeat along with low everything. I am a runner and have been for 30 years now. (2 miles a day) I also dance. I wouldn't say I'm low energy but I am cold a lot. The cardiologist feels the low rate is from being in good shape from running and said the arrythmia is benign. If you have been checked I wouldn't worry about it; it's probably just "you".

I have fainted every single time I've thrown up since I was a little girl- it's terrifying! I'm terrified of stomach "bugs" for that very reason. It was just explained to me it's because of low blood pressure and the vagus nerve. Still scary though. I hope you don't faint very often.

Feel better.

lisa

Hi, not to beat a dead horse, however I have had this very problem most of my life. Finally I got the worst aspects to go away--namely the tachcardia and fainting. I haven't had my BP check recently but it feels better. I can now use a sauna and jacuzzi without fainting, a first for me since forever.

So what is my magic secret? Country LIfe Co-enzyme B vitamins. Check them out. They really mighth elp you too. The co-enzyme part makes it so the B's don't have to be digested through the liver. Instead they go straight into the blood stream. I can't absorb regular B vitamains and with celiac the state of the villi make it almost impossible to make my own. Beleive me these co-enzyme B's have changed my life. I can now exercise and feel years younger. I also am more resistant to colds and flus as long as I don't get glutened.

Just thought I should let you know!

YoloGx Rookie
YoloGx
Posted
Hi, not to beat a dead horse, however I have had this very problem most of my life. Finally I got the worst aspects to go away--namely the tachcardia and fainting. I haven't had my BP check recently but it feels better. I can now use a sauna and jacuzzi without fainting, a first for me since forever.

So what is my magic secret? Country LIfe Co-enzyme B vitamins. Check them out. They really mighth elp you too. The co-enzyme part makes it so the B's don't have to be digested through the liver. Instead they go straight into the blood stream. I can't absorb regular B vitamains and with celiac the state of the villi make it almost impossible to make my own. Beleive me these co-enzyme B's have changed my life. I can now exercise and feel years younger. I also am more resistant to colds and flus as long as I don't get glutened.

Just thought I should let you know!

PS--you need to take them away from food for the best result. I take them late at night and first thing in the morning. Others here on the board have also found them helpful too against various skin and nerve conditions. Please let me know if it helps you.

gluten15 Apprentice
gluten15
Posted

Is the Country LIfe Co-enzyme B vitamins better than Jarrow Formulas, B-Right?

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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