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Is This Normal?

Mj25

By Mj25
in Coping with Celiac Disease

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Mj25 Newbie
Mj25
Posted

I was just recently diagnosed with celiac disease in March. I have been on the gluten free diet for a month as of yesterday (May 1) and have been experiencing muscle spasms all over my body and I mean all over! I have also had several bouts where I get very shaky, dizzy, nauseous and feel very weak. I was previously told that I am hypoglycemic but usually if I eat something sweet when I feel like that it goes away and this doesn't go away no matter what I eat. I have to just lay down and rest and it is the worst feeling. Also, I have had this DH rash all over my body for a week now and it will not go away. Is all this normal? Is there anyway to get rid of this rash or at least soothe it somewhat? It is driving me crazy.

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Ursa Major Collaborator
Ursa Major
Posted

Several things come to mind when you talk about muscle cramps, weakness and dizziness. The muscle cramps could be caused by a magnesium deficiency. The weakness could be an iron deficiency/anemia. You could also have adrenal fatigue.

My suggestion is, to see your doctor and demand (nicely :rolleyes: ) to be tested for nutritional deficiencies, since those are extremely common with celiac disease. The reason of course is, that your intestines can't absorb certain nutrients when your villi are damaged.

You need to be tested for magnesium, calcium, vitamin D, ferritin (iron), hemoglobin, vitamins B12 and B6 and vitamin K (if I forgot something, others please chime in).

You should also have a bone density test done, as even children can have osteoporosis because of celiac disease already.

pedro Explorer
pedro
Posted

HI Mj25

My daugther suffers from the rashes. We got a natural soap that contains vit E as long as the soap Does Not contain gluten.

I experienced the muscle spasms and cramps all over my body, they usually attack at in the middle of the night. When I started the gluten-free diet 5 weeks ago. I try to take lots fluid everyday to flush my system, and please don't forget to take vitamins. The feeling of shaky, dizzy, nauseous, weak, has dissapear for me.

I hope you get better, best regards to you.

loco-ladi Contributor
loco-ladi
Posted

Well, once upon a time I had a foster child with juvenille asthma and not wanting him to be dependant on medicine we both looked into natural things to do that would help....

One thing was increasing the magnesium intake, so I will admit when he found out that it meant more leafy green veggies he was dumbstruck, I believe his exact words were "EEEWWWWWWWW... theres NO way I will eat lettuce or spinich" we ended up striking a deal, he only had to eat 1 leafy green veggie a week at a meal if he learned how to take a magesium suppliment..... never seen a kid so eager to learn to swallow a pill in my life!

p.s. he absolutely loves spinich now(dont think thats spelled right but i cant do no better today i guess)

DestinyLeah Apprentice
DestinyLeah
Posted

Another thought- your muscles cannot function correctly without potassium, neither can your brain. It is the 'lube' that makes the signals from nerves transition smoothly. The other thing you would notice in this case is a rapid or odd heartbeat, where beats are either skipped or added where they shouldn't be.

Definitely get tested for deficiencies, as well as for white count. High white count along with these symptoms usually means a lot of inflammation, and in order to treat a deficiency, you would need to know which ones you have. Besides, Rx supplements could be needed if you are severely under the necessary amount. a month later, and I'm still on horse-pill potassium supplements. I just don't absorb anything anymore!

sunshinen Apprentice
sunshinen
Posted

I would also question whether you are accidentally still getting gluten. It took me about 6 months to really learn the diet.

When I was diagnosed, I had reached the point where it was very hard to bring my sugars back up. I think this is because it gets to where we just aren't absorbing or adequately processing either the fat/proteins that help balance sugar levels or the sugar to actually bring the levels back up. For several months, I had to really eat lots of snacks throughout the day.

I also took a lot of supplements to build my body back up, including vitamins, minerals, and adrenal and immune system support.

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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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