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Energy - Never Seem To Have Enough


laura3

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laura3 Newbie

Hi

I've been a diagnosed coeliac for 3 years now and I still seem to have issues with energy. If I overdo it slightly (i.e. working long hours or staying up late) my recovery takes a long time. I'm wondering if I'm lacking in some nutrient due to mal-absorbtion, or whether alcohol should be completely avoided as a coeliac or what? I'm interested to hear if others have found a particular connection between a vitamin or mineral and energy and/or the alcohol question.

I live in New Zealand and haven't been able to locate a GP/specialist/natural health practitioner who has a special understanding of coeliac disease. Do you know of anyone?

Huge thanks for any help you can offer.


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elye Community Regular

The first thing that comes to mind is hypothyroidism, something that can cluster with celiac disease. Have you had your thyroid levels checked? Lack of thyroxide can cause exhaustion. Low iron can, as well. You need to get a full run of blood work--can you visit a clinic, and see a doc there who can prescribe it?

YoloGx Rookie

I have found the alcohol can definitely be a problem. Much of it is made from grains--especially wheat and barley. Even corn can be suspect since much of it is infected with gluten. I used to use herbal tinctures and pour boiling water over them to get rid of the alcohol part--however the grains remain. It made a big difference for me to go off them--as well as soaps, waxed dental floss etc. that have trace gluten in them. Even building materials like pre mixed plaster often have starch and probably a host of other things with glue in them. I am thinking it might make a big dif. for you too. Only downside is that getting cross contamination effects becomes easier and more dramatic. However the increased energy, less body aches, clearer mind etc. makes it worth it.

Also do consider taking supplements since malabsorption seems to be a big deal with celiac even after following the diet for a while. Thus taking vitamin D (for me cod liver oil is best), co-enzyme B vitamin complex without the sorbitol, gluten free vitamin E, gluten free vitamin C, calcium citrate or Ezorb, magnesium, zinc, trace minerals, essential fatty acids, acidophilus all really help. Taking herbs like marshmallow root and slippery elm will help sooth and heal the lining of your gut. Using bromelain/papain caps. with your meals should help with digestion.

By the way, there is a gastro-enterologist from New Zealand who offers opinions here on celiac.com. He has written some books. I forget his name however you should be able to track him down in the section on articles.

Lux Explorer

Hey Laura,

I also live in NZ and have found it particularly difficult finding anyone with specialized knowledge regarding celiac disease. I have to say that, particularly since going gluten-free, alcohol has been a big don't-go-there zone. I actually had begun to suspect that this was due to a sulfite issue (I have a big prob with sulfites), but I wouldn't be at all surprised if it were all bound up in the celiac disease.

Sorry :-(

Lux Explorer

O, the other thing I wanted to mention is that, since introducing flax seed oil into my diet, I have experienced a huge energy increase...I take 2 Tbs each day, usually poured over brown rice or veges...:-)

laura3 Newbie
The first thing that comes to mind is hypothyroidism, something that can cluster with celiac disease. Have you had your thyroid levels checked? Lack of thyroxide can cause exhaustion. Low iron can, as well. You need to get a full run of blood work--can you visit a clinic, and see a doc there who can prescribe it?

Thanks Emily, I really appreciate you taking time to offer your thoughts. My doctor suggested the blood tests today, so we shall see!

Laura

Mango04 Enthusiast

Hi - Sorry you are having a hard time. Just some thoughts....

What is your diet like? Do you eat plenty of whole, healthy foods? Do you get the correct balance of carbs to proteins to fats? Do you eat sugar? Do you eat processed foods? Hope you find some answers soon!


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RiceGuy Collaborator

I had virtually no energy and couldn't stay awake until I started taking methylcobalamin (B12) and magnesium. My sleep cycles improved quite a lot too.

And I agree that things like alcohol, sugar, processed foods, etc can drag you down.

Joni63 Collaborator

Hi Laura,

I just wanted to add that I'm having similar problems. I've only been gluten free for 8 months, but my energy level is horrible.

I eat really well, no sugar, low carbs - about 90% whole grain products, no dairy, no caffeine, (I cheat with chocolate sometimes) a lot of fresh fruits and veggies and meats, and very little processed food.

Recently I begged the Dr. to test me for thyroid and other vitamins. You really need to check A,D,E,K,all B's, and Iron panel including Ferritin, Serum, and magnesium. I think I've covered them all.

They found my serum ferritin and D are both way below the low limits.

Try to get your Doctor to check all those vitamins. Malapsorption can cause us to lack what we need and feel really bad.

Good luck and let us know how you make out!

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    • marion wheaton
      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
      @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
      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
      @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
      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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