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Whal Else Could Be Wrong?

Demby Flex

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Demby Flex Newbie
Demby Flex
Posted

Hello, I'm a newbie to this forum. I have been gluten free for over a year but am still coping with a lot of daily muscle pain/tension(from my toes to my neck - mostly on the left side), headaches, off balance feeling, cracking joints,crackling noises in my ear, fatigue, fuzzy vision etc. - just a general feeling of being not well. I've been very very careful about avoiding gluten and my entire house is gluten free (and I rarely eat out)so I don't think that accidental glutening or cross contamination is an issue.

I have been tested for everything under the sun from rheumatoid arthritis to sjorgen's syndrome to lyme disease and can't figure out what else could be going on. The doctor's told me that I possibly could have tmj, but I have been wearing a splint for five months with little relief. I did have a low Vitamin D level back in April (not deficient just lower than the normal range), and have been taking extra vitamin D (1,000 UD) since.

Is it possible that my Vitamin D levels could be still low and causing these symptoms or could I have developed some sort of food intolerance? Something else?

I appreciate any ideas, thanks!

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AlysonAnn Newbie
AlysonAnn
Posted

Hi, I am in the same exact situation. I've been gluten free for only a month. I continued feeling bad, and now almost worse after giving up gluten. I am having shivers, fatigue, brain fog, fuzzy vision, constipation and a lot of hair loss.

The symptoms seem to arise only after eating things. Never in the morning. I would like to hear other people's opinions and experiences with what could be happening to us. I can't get through the day feeling like this. I just want to curl up with a blanket and stare at the wall. This is not good!

I feel your pain.

-Alyson

ravenwoodglass Mentor
ravenwoodglass
Posted

What are you guys eating? You should be going with whole unprocessed foods as much as you can. It is also not unusual for us to have other intolerances. The most common are soy and dairy. Also make sure you are doing all you need to in your home to prevent cross contamination. It can take a while to heal but after a year you should be well on your way. Make sure you have checked all drugs, OTC and script for gluten with the maker. Also check all supplements and be sure to read the whole label as barley and wheat grass can be in the item but it is still allowed to have a gluten-free label. CC can even come from nonfood sources like makeup, shampoos, pet foods, remodeling materials, the workplace if you work around flour or use it when cooking for others and art and craft supplies.

I hope your feeling better soon. Read as much as you can here and ask any questions you need to.

AlysonAnn Newbie
AlysonAnn
Posted

Hi ravenwoodglass, thanks for your advice. I have been reading around a lot and I gave up dairy, soy, all medications and supplements. As I had said I am eating only whole veggies and fruits, rice, gluten free pasta, and olive oil. I have been pretty minimal for a while now with no positive change. I am going to look into salicylate, amines and glutamate intolerance and sensitivities. I don't know what else to do.

-Alyson

Glee06 Newbie
Glee06
Posted

Sorry to hear your still having problems. It does take time to heal. I have noticed I have begun to have problems with corn and rice-they each have their own gluten as well. :( Check out the book Specific Carbohydrate Diet or SCD and also look into the health benefits of Braggs Apple Cider Vinegar. I hope you feel better soon.

mushroom Proficient
mushroom
Posted

I did have a low Vitamin D level back in April (not deficient just lower than the normal range), and have been taking extra vitamin D (1,000 UD) since.

Is it possible that my Vitamin D levels could be still low and causing these symptoms or could I have developed some sort of food intolerance? Something else?

I appreciate any ideas, thanks!

If your D is low, 1000 IU is not going to get it back in range any time soon. Your D needs to be mid-range for you to feel good. The way my doc explained it to me, if you take that small a dose it is like having an empty gas tank and putting in one gallon to get you to the next gas station -- you are always running on empty. You need to fill up the tank first (I took 50,000 IU once a week for two months, and presently take it every month. I have just seen a nutritionist who prefers that I take 3000 IU every day (and my levels are good now) so you can see that your 1000 IU is not going to get you very far :o I would ask your doc to give you some prescription D3 to bring your range up to mid-level and then take 3,000. But that's just my experience and opinion.

cassP Contributor
cassP
Posted

AlysonAnn: i dont know anything about u- but do u think u might need meat and fish in your diet?? some people feel best as a vegan, but others like me would be absolutely sick without meat. **also- have u gotten your thyroid checked?? sometimes thyroid problems can cause hair loss

idk?? hope you first 2 posters are getting everything checked with your doctor... i dont know how long you were Celiac or gluten intolerant before your diagnosis... some people have a lot of complications from years of nondiagnosis. ??? a friend of my mom's wasnt diagnosed till she was in her 50s... by then she had some Osteoporosis.. and had strange symptoms like Paget's Disease- of course it took like 25 years for someone to dx her with Celiac <_<

good luck with everything... hope you 2 feel better soon

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Demby Flex Newbie
Demby Flex
Posted
  • Author

Thank you all for your responses. I will go back to the doctor to have my Vitamin D levels re-checked and having the vitamin level increased. Have any of you had magnesium supplements resolve muscle pain? My magnesium levels are fine, but I've heard that the blood test is not necessarily accurate.

I will also check into the Cider Vinegar and Specific Carbohydrate Diet, as well as soy possibly causing an issue. I don't seem to eat much soy in my food, but I do eat a lot of soy lectin - can this still cause issues?

Thanks again,

Katherine

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi ravenwoodglass, thanks for your advice. I have been reading around a lot and I gave up dairy, soy, all medications and supplements. As I had said I am eating only whole veggies and fruits, rice, gluten free pasta, and olive oil. I have been pretty minimal for a while now with no positive change. I am going to look into salicylate, amines and glutamate intolerance and sensitivities. I don't know what else to do.

-Alyson

You are doing the right things. You have only been gluten free for a month and it can take some time to heal. We can also have withdrawls from gluten so you may have a bit of that going on also. I don't see any protein in your diet, what are you eating for protein? If you are a vegetarian beans and nut butters added to your rice would be a good idea. If not make sure you are eating some meat, chicken or fish.

dilettantesteph Collaborator
dilettantesteph
Posted

Have you seen this?

Naturally gluten free grains can be contaminated. Are you eating any processed grains? Like pasta? It could be contaminated too. I buy my grains whole, sort, wash, dry and grind myself. I am very sensitive to low levels of gluten.

GFinDC Veteran
GFinDC
Posted

You are doing the right things. You have only been gluten free for a month and it can take some time to heal. We can also have withdrawals from gluten so you may have a bit of that going on also. I don't see any protein in your diet, what are you eating for protein? If you are a vegetarian beans and nut butters added to your rice would be a good idea. If not make sure you are eating some meat, chicken or fish.

Agree agree agree. Try some meat or add some avocadoes I'd say ditch the gluten-free pasta for a while and stick with rice or quinoa. Are you eating nightshades? Tomatoes, potatoes, peppers, eggplant? They can cause problems for some people.

Skylark Collaborator
Skylark
Posted

Hi, I am in the same exact situation. I've been gluten free for only a month. I continued feeling bad, and now almost worse after giving up gluten. I am having shivers, fatigue, brain fog, fuzzy vision, constipation and a lot of hair loss.

I just learned about this recently. Some people get an opiate-like effect from gluten.

Open Original Shared Link

You might be going through something like narcotic withdrawals. The shivers and fatigue certainly fit. I don't know how long it will last if that's what is happening to you. I didn't have to go through anything like that myself.

There's a TON of other info on that website, so if the opiate idea doesn't feel right you might find something else helpful. I hope you feel better soon.

DembyFlex, you might look at the FAILSAFE diet on that site. It's supposed to be really good. I'm thinking of trying it myself.

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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
      Son's legs shaking

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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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