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Disabling fatigue 3 years on

Liza22

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Liza22 Newbie
Liza22
Posted

Hi,

I've been on a gluten free diet, v strict regarding cross contamination etc, for almost 3 years now. My antibody levels after being in the 80s or something went down to 6 and then down to barely detectable, my gastroenterologist is baffled as to why I feel worse not better. I never had any gastro symptoms ie nausea/diarrhea pre diagnosis, I went to my GP for extreme sleepiness, i'd sleep late in the morning, get up and then have to nap like an hour later because a wave of sleepiness would come over me and i'd feel like I needed to lay down or i'd pass out. After all tests came back normal I was tested for celiac as my mum has it. After going gluten free I thought my sleepiness would go away but no! Over the last six months things have gotten worse. I can't do housework or walk far without getting lightheaded and needing to sit down. I now have some morning or evening diarrhea (it's fine during the day). I've had heart palpitations but 24hr ECG and echo have shown nothing, and fatigue has become disabling. I've had to reduce my work hours and I still collapse exhausted after a four hour shift. I've had loads of blood tests (diabetes, thyroid, anemia etc) that all come back normal, also sleep apnea has been ruled out.

I guess i'm asking if anyone knows what conditions could be caused by or linked to celiac? Other autoimmune disease etc? Or is it possible to be food related?

I'm getting married in a few months and we've already had to scale back on the wedding day because of my condition. Doctors just shrug or say anxiety but I know there's something physically wrong :(

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icelandgirl Proficient
icelandgirl
Posted

Hi Liza,

I'm sorry to hear that you are feeling poorly, it must be discouraging.  (((Hugs)))

Have you had your thyroid fully tested including tests for autoimmune thyroid disease (Hashimotos and Graves)?  I feel terrible when my thyroid is off.  The thyroid plays a part in everything function in your body.  These are the tests you need if you haven't had them yet: TSH, Free T3, Free T4, TPOAb and TgAb.  

Other things to look at would be B12, D and ferritin.   Any of those being off can cause a person to feel bad. 

I hope you find some answers and feel better soon!

GFinDC Veteran
GFinDC
Posted

Hi Lisa,

A couple things I think might be worth trying:

1: Cut out all caffeine from your diet for a month, see if it helps.

2: Take some selenium.

3: Find out why you are having diahhrea.  Fix that and see what happens.

You may be reacting to other foods besides gluten.  It is not real unusual for people to react to dairy,  Other food triggers may be any of the top 8 food allergens, plus many other foods.

Also, does your future hubby brush his teeth before kissing you?  We can get glutened from others saliva.

I hope you feel better soon! :)

cap6 Enthusiast
cap6
Posted

I was going to say thyroid as well and most definitely check your iron levels.   I am 6 years g.f. and constantly battle chronic fatigue.  I would sleep 10 to 12 hours and take a 2 hour nap during the day.  Now I am on 325mg iron x 3 a day.  If I get lazy and don't take it, I pay!  Even tho I eat quite well my doctor explained that some celiacs just plain don't process the iron and always have trouble.  So, if it was me, I would run to the doctor and get your iron levels and b12 checked.,

  • 11 months later...
DrMommy09 Rookie
DrMommy09
Posted

I am in the same boat--just wondered if original poster was able to find an answer here.

Ennis-TX Grand Master
Ennis-TX
Posted

I find my fatigue and muscle pains hit bad if I do not take iron, protein,  and B vitamin supplements throughout the day, High Iron and Magnesium Protein powders (vegan Pea based ones) in a shake throughout the day help along with B vitamin supplement before meals and a diet with a bunch of fats, and leafy greens in every meal. Alot of times it is the damaged intestines that prevent us form absorbing the nutrients we need from the foods we do consume leading to a nutrient deficiency and the need to supplement for a higher intake. Nutritional yeast is a bloody god send in my diet for nutrient supplementation.

I also feel generally fatigued when I have a additional reaction to some foods, but this is generally accompanied with other obvious signs, like fever/bloating/gas etc. in some combination.

Posterboy Mentor
Posterboy
Posted

Liza22,

see this thread so I don't have retype everything.

Another poster asked about how to restore energy after a Celiac diagnosis.

Magnesium Citrate can help with the energy you are missing.

The other posters advice is solid too.  It could be your thyroid and your iron levels.

The problem with Celiac's we often get low in many nutrients/minerals/vitamins and all of them together can make us feel worse.

I have never known Magnesium as a Citrate or Glycinate not to boost a persons' energy level.

3/day 200mg Magnesium Citrate can really  help people's energy level.

I hope this is helpful.

posterboy,

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Ennis-TX Grand Master
Ennis-TX
Posted
7 hours ago, Posterboy said:

Liza22,

see this thread so I don't have retype everything.

Another poster asked about how to restore energy after a Celiac diagnosis.

Magnesium Citrate can help with the energy you are missing.

The other posters advice is solid too.  It could be your thyroid and your iron levels.

The problem with Celiac's we often get low in many nutrients/minerals/vitamins and all of them together can make us feel worse.

I have never known Magnesium as a Citrate or Glycinate not to boost a persons' energy level.

3/day 200mg Magnesium Citrate can really  help people's energy level.

I hope this is helpful.

posterboy,

Thanks for mentioning this I almost forgot to mention the magnesium, thought I would suggest starting off in much smaller doses with Magnesium Citrate, or just Magnesium Glycinate. Sudden introduction of Magnesium Citrate can have some negative effects at full dose and needs to be added slowly to ones regime and then adjusted to the optimal dose otherwise. Made that mistake myself, it will give you diarrhea if you suddenly start taking it full dose or take too much. I now take a mix of both of them a bit over the dosage posterboy suggested. Along with supplements for B-Vitamins, and Iron,

I also suggest getting tested by a doctor for any other deficiencies you might have then a dietician to see about coming up with a diet to fit your needs. As everyone is different, in how celiac has damaged their bodies. But it is really common for many of us to develop deficiencies, me it was Magnesium, Iron, B vitamins, And a few others that are kept in check by just making sure I eat leafy greens and Nutritional yeast in every meal.

Brands I might suggest, Note I prefer to mix mine into a drinks to sip on over time to avoid pills, and that spike feeling of taking something.  Liquid Health has some nice B Vitamin formulas I use their Energy and Stress blend and the Neurological support one half a dose each 2-3 times throughout the day around meals times in a beverage along with Doctors Best magnesium Glycinate. I use Magnesium Calm which is the citrate version sometimes in other beverages, it has fizzy effect on beverages.

Reindeer1 Newbie
Reindeer1
Posted

Hi,

You might be allergic to soy. I had awful fatigue in the morning about 2 hours after I got up. I was so tired every morning I couldn't function and had to lie down for an hour. I literally thought that I had some horrid disease. One morning as I was lay on the couch the View was on and Elizabeth (who has celiacs) said that most people with celiacs are allergic to soy. Well I got up and checked the ingredients in everything I'd ate that morning and bingo, there is was...soy in my gluten free vitamins! I stopped taking them and am fine, although I accidentally get soyed from time to time at least I know what it happening to me. Check for soy..it's everywhere.

Hope this helps you out!

deb-rn Contributor
deb-rn
Posted

Also, most people are Vit D3 and Omega-3 deficient.  Try eliminating all grains from your diet.  There are mold toxins that can affect you.  Try eating just veggies and meat for a while.  The butyrate in butter is actually VERY healing to the gut.  I've been reading about the Epstein-Barr virus lately and it's implications on fatigue.  It would have been easy if it was just gluten... but with all the chemical sprayed on, injected into and fed to our animals... we are bombarded with so much toxin!  Some of us are not able to rid our bodies of it.  I would recommend you read Wheat Belly-Total Health by William Davis,MD.  He gives a lot of causes for various diseases.  You might find yourself described in there.  Best of Luck!

Debbie

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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? 
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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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