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So Tired All The Time

AJoy

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AJoy Rookie
AJoy
Posted

I was diagnosed with celiac through a blood test in October and have been gluten free for over a month now. At first I went through withdrawal which was tough but then I started feeling better. I must have taken a turn for the worst because the past two weeks I have been SO low on energy it's hard to function. I work full time plus run a part-time business. I am overwhelmed and getting more depressed by the day. I had blood work done last week which showed an Iron and vit D deficiency so I just started supplements and am hoping they will help. I think I have enough carbs in my diet because I am not constantly hungry like I was in the beginning. I just turned 24 and I feel like i'm in my ninety's and senial - I am so tired I can't think straight. I don't want to move out of bed, and when I do it's literally painful and it takes hours to feel even remotely awake and a few hours later I am back to being completely exhausted. I feel like it is abnormal for me to feel worse after weeks of being on the diet - has anyone else experienced this? Aside from the vitamin supplements is there any advice on how to gain some energy in the near future?

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Paula C Newbie
Paula C
Posted

I was diagnosed with celiac through a blood test in October and have been gluten free for over a month now. At first I went through withdrawal which was tough but then I started feeling better. I must have taken a turn for the worst because the past two weeks I have been SO low on energy it's hard to function. I work full time plus run a part-time business. I am overwhelmed and getting more depressed by the day. I had blood work done last week which showed an Iron and vit D deficiency so I just started supplements and am hoping they will help. I think I have enough carbs in my diet because I am not constantly hungry like I was in the beginning. I just turned 24 and I feel like i'm in my ninety's and senial - I am so tired I can't think straight. I don't want to move out of bed, and when I do it's literally painful and it takes hours to feel even remotely awake and a few hours later I am back to being completely exhausted. I feel like it is abnormal for me to feel worse after weeks of being on the diet - has anyone else experienced this? Aside from the vitamin supplements is there any advice on how to gain some energy in the near future?

Paula C Newbie
Paula C
Posted

When The doctor told me that I was anemic, I switched from being vegetarian to eating ridicules amounts of red meat and taking iron pills. This didn't help my iron deficiency and it was so bad that the doctor insisted that I was not being honest about eating the red meat. Finally the doctor tested me for celiac disease, and the positive result indicated that the problem was that my damaged intestine would not allow any of the iron to be absorbed into my system. This could be what is happening with you.

I switched to a liquid iron and vitamin formula and it worked better for me that the pills. IMPORTANT - Make sure that you get the gluten-free kind. It helped but it was still not enough and, finally the doctor gave me an iron transfusion and I felt great. My recovery took over a year, but you are about half my age so you should heal a lot faster. I know that it is hard, but just be patient with yourself and give yourself time to heal. Take the liquid iron formula and if that doesn't work, ask for the iron transfusion.

cap6 Enthusiast
cap6
Posted

After 6 months of iron supps my dr suggested liquid iron. She said that Celiacs often have trouble absorbing the nutrients and liquid iron is absorbed faster. It does work - just such a very very slow process. Slowly you notice that you aren;t sleeping quite as many hours a day! Just read the labels. I grabbed a bottle of liquid iron the other day only to be stopped by the clerk who showed me that the company puts out both gluten-free and gluten kinds - the only difference was the color of the writing on the box and the ingredient label!!

  • 4 weeks later...
Trymester Contributor
Trymester
Posted

Can any of you who have had success with this liquid iron please post or message me the name of the brand you use? Thanks.

Mama Melissa Enthusiast
Mama Melissa
Posted

I am 27 been on the diet 3 months while i feel a big improvement especially in gi problems i do think i may have other intolerances as if i eat or drink something rough on my stoamch such as coffee,tomato sauce etc i get extremely tired and foggy headed within an hour and it will last hours which is an improvement from lasting days.I feel when going out to stores sometimes faint and lightheaded i am not sure if it is low blood pressure or sugar, i did have a test for diabetes and i was fine ans never had a problem with blood pressure,i swear this is such a mystery disease also i am not anemic althought i wish i was as it would give some light to my extreme fatigue:( Good luck with time it will get easier!

cap6 Enthusiast
cap6
Posted

I felt like that the first 5 months & then they finally checked my iron. I now take liquid iron rather than the pills as it absorbed into the system better. You may want to have some blood tests run.

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dilettantesteph Collaborator
dilettantesteph
Posted

It might help you to avoid processed foods until you heal. Some of us can't tolerate the small amounts of gluten that they contain due to cc.

applegirl03 Rookie
applegirl03
Posted

It might help you to avoid processed foods until you heal. Some of us can't tolerate the small amounts of gluten that they contain due to cc.

I am 25 years old, so I totally know how you feel as far as being tired and frustrated. I would suggest an (Company Name Removed - They Spammed This Forum and are Banned) test, which test for over 500+ different food sensitivities. I was diagnosed first with celiac, then when I wasn't getting any better after months and months they did the (Company Name Removed - They Spammed This Forum and are Banned) test. It showed I had many many other food sensitivities. After eliminating those I felt much better. I still struggle with fatigue and "brain fog" to this day. Drinking enough water can really help. I would also suggest that your doc check your stool for different parasites and a possible yeast overgrowth as those can mimic celiac symptoms. Hope this helps and I hope that you feel better soon!

Free-CountryGirl Apprentice
Free-CountryGirl
Posted

Everything everyone has suggested is great advice, I also just wanted to add (as if you don't already know, I'm sure you do) to make sure you haven't been getting cross contaminated or accidentally been eating trace amounts of gluten. Wash hands thoroughly before eating, rinse off utensils and plates before eating, check all labels and if you arent 100% sure dont eat eat it, etc. I just had to mention it just in case, even though you are probably well aware.

Trymester Contributor
Trymester
Posted

Sorry if my persistence is annoying, but what is the name of the liquid iron that you are taking that you have found to work for you? If you can't post it, send me a PM. Thanks.

cap6 Enthusiast
cap6
Posted

I take Floradix Floravital Iron & Herbs liquid. It is at the health food store. be careful as there are two that look exactly the same, both made by the same complany, Salus. One is marked Gluten free, the other is not & has wheat. After 6 weeks I can stay awake later than 8:00! lol

rosetapper23 Explorer
rosetapper23
Posted

Just want to add that if you're low in Manganese, you can't utilize the iron....and will still feel tired. The best type of Manganese to take is the chelated form.

Also, although Floradix is a very good liquid iron, it is very LOW in the amount of iron it delivers. If you don't feel better soon, ask your doctor for intravenous iron infusions. These infusions are usually weekly for four weeks, and then you'll feel great for at least two months.

Trymester Contributor
Trymester
Posted

So, for all of you it actually showed on your blood panels that ya'll were low in iron.

Also, the maganese comes out under that name in your blood panel or does it show up under a different name?

FooGirlsMom Rookie
FooGirlsMom
Posted

I'll throw my 2c worth in. I notice my energy drops significantly if I forget to take Sublingual B complex 2x a day. I have given it to my husband and kids and they now come clamoring for it whenever they start feeling tired in the middle of the day or didn't get enough sleep. The stuff's amazing. I buy one that costs about $6 from Walmart (Spring Valley?) It's gluten-free and tastes nice and there are a lot of doses with that dropper bottle :)

Hope you feel better soon,

FooGirlsMom

SuzanneT Newbie
SuzanneT
Posted

I've also been feeling really tired - usually I'm ok for a few days then feel tired and horrible for a few days. I think it happens when I over exert myself. I've been gluten free for about 7 weeks now. I've definitely seen some improvements, but it is very slow and frustrating!

cap6 Enthusiast
cap6
Posted

It took about 3 months for me to feel better. One day I just realized that I wasn't going to bed at 8:00 any more. Can really tell the difference if I forget the iron more than once. Hope it helps you

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    • 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
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      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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