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No Energy/tired Please Help

Jogi

By Jogi
in Coping with Celiac Disease

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Jogi Newbie
Jogi
Posted

Hello I am new to these forums.

I have been diagnosed with celiac since I was a child. But only recently in the last year or so I have had times where I felt really tired. I could barely keep my eyes open.

I find myself trying to study for school and I have no energy and I can not concentrate. I have no idea what the cause of this is. I tried drinking coffee and still no luck. I take a multi vitamin everyday and drink lots of tea and eat healthy and I do not eat any food containing the substances which we are not allowed to eat.

Does anyone know how I can keep my energy levels up?

I went to the doctor and told him that at least once a month I am so tired I could sleep for days and he sais this is normal. He simply sent me home with nothing.

I have also been experiancing excess hair loss. I am a female with brown shoulder length hair. Does anyone know why this happens?? I wake up in the morning and I see hair everywhere. Please help me.

Thank you in advance for anyone who takes the time to answer my questions. Now I must go sleep as always feeling extremely tired.

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tarnalberry Community Regular
tarnalberry
Posted

You might ask about getting a blood test to find out what your levels of testosterone and estrogen are. Don't let your doctor say no because of age, I'm 25 and have levels too low to be detected by the tests! Taking testosterone has keep me from needing a three hour nap every day! (Not to mention helping a bunch of other symptoms...) But particularly with the tiredness and hairloss, a hormone test could help.

lisabarella Apprentice
lisabarella
Posted

Are you anemic?

Guest jhmom
Guest jhmom
Posted

Hi Jogi:

If your doctor is not taking your fatigue and hair loss serious I would find another doctor. There are a number of things that could be causing your problems, and it needs to be checked into by blood work.

Have you had your thyroid levels checked? That could cause hair loss and fatigue. Do you have unexplained joint or muscle pain? There are a lot things that it could be, that is why it's so important to find a good doctor that will listen to you.

Several months after going gluten free I began to have unexplained EXTREME fatigue and could not do in a day what I once could (cleaning house, running errands, etc.). I went to my doctor and he ran some test after I explained to him what was going on. The test came back positive and I am currently being checked for Lupus, I am already being treated for Hypothyroidism so I knew it wasn't that.

Feel free to send me an email if you have any further questions..... Take care and I hope you find some energy soon!

Chaz Newbie
Chaz
Posted

Anemia is a real possibility as celiac can interfere with iron absorption.This can really cause problems with low energy and sleepiness too.Is your doctor really familiar with celiac disease.Many are not and they tend to downplay symptoms like these.Bloodtests are probably a good idea.My doctors also checked for thyroid problems as mentioned above.I do construction work and I can vouch for the fact that anemia can really take a toll on your energy.

good luck

flagbabyds Collaborator
flagbabyds
Posted

It could very welll be thyroid problems, you could also try and see a sleep doctor. in the fall i started to be so tired and i went to a sleep doctor and it turns out i have sleep apnea, you nver know, you could be ripping your hair out in you sleep.

OleSoftie Newbie
OleSoftie
Posted

Hi Jogi,

You should be checked for iron deficiency anemia. I was extremely tired, and my doctor found that my iron levels were so low that I had to have a tranfusion of iron (not a blood tranfusion- just iron in solution). It really helped to boost my energy, and taking a daily iron supplement keeps me feeling good.

Good luck to you!

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kalo Rookie
kalo
Posted

Check out the thyroid info at about.com. There are many undiagnosed/undertreated thryoid people in the world. Most doctors don't have a clue. Also, do a search for the Broda Barnes Foundation. They have some good info. thyroid@yahoogroups.com is a good support group and place to ask questions. Get the right tests done (TSH, FT3 and FT4) and post to the group including lab ranges. F=free. Never hurts to get it checked out. Hugs, Carol B

Jogi Newbie
Jogi
Posted
  • Author

Thank you for the help :) I really apreciate it.

I have had blood tested before but this was for vitamins and he said everything was fine. I will go see the same doctor next week and get these tests done this is really getting worse.

Thank you for all your help.

Also I was wondering if any of you take daily pills or supplements to help with vitamin intake? I am curious if I should be taking something outside of eating healthy.

Thank you to all :)

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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
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      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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